About me

Thanks for spending some time on my Pilonidal blogsite. I hope you find it informative, entertaining or useful, or if I’m lucky all three.

I’m a man in my early 30’s, and I’ve suffered with Pilonidal disease at various times to a lesser or greater extent, for a total of about eight years. I had my first Pilonidal surgery in 2005, and my last one in 2008. I live in the UK, in Surrey, and I’m fortunate to work as a designer for a digital media company, which means throughout my recovery periods post surgery I was able to work effectively at home. I sympathise with anyone else living with Pilonidal disease, particularly those people whose ability to do their job is ruined by long post surgical healing times, and I’d love to hear from you if you’d like to get in touch. I’m particularly interested to hear from you if you’ve had a failed z-plasty or flap reconstruction of any kind.

For the purposes of avoiding spam, my email address isn’t on the site, however if you leave me a comment I’ll write back to you and delete the comment afterwards if you ask me to. The first comment you post won’t appear on the site until I’ve ok-ed it anyway so your comment need not ever actually appear at all if you don’t want it to.

Anyway the history of my Pilonidal Sinus starts here and an account of my surgeries are in the navigation on the right. I started this site during the healing after my fourth surgery and I posted updates during the process to the blog, eventually it healed up, so this site is basically a summary of my experiences with the disease and the wisdom that I’ve accumulated along the way.

Colin

202 Responses to About me

  1. venkey says:

    hi I having problem of perianal sinus first it stared with perianal abscess and second time occurred with in two months again the incision and drainage done and six months was pus coming out again I have got operated still the pus is discharging pl give some solution to for permanent solution

  2. Paul says:

    Hi folks I’m back with an update, I had my third post op with the surgeon on Friday 30th May, good news I’m healed but not allowed to sit down for long periods(I haven’t been able to sit down properly for seventeen years so what’s new). Anyway it took all of four days for my scar to become painful and inflamed, on day five it opened up a little, only about one cm long but it feels like I’ve been kicked up the backside by a horse!. Saw my GP today and he won’t refer me to the specialists in Portsmouth and wants me to wait until my scar has healed and opened up a couple more times(honestly astounded by this). So here I am lying on the couch with Manuka Honey spread between my butt cheeks as it’s the only thing I haven’t tried yet, I’ve read some good reports on wound healing using this stuff so let’s see

  3. Ralph says:

    Thank you Becky and John for your comments. I will get a couple of a options from a few docters and find what’s right for me. I definitely don’t want to do a full blow excision. John, what was your recovery time for cleft left procedure?

    • John says:

      Hi Ralph,

      for the cleft lift procedure, I was at home lying on the side in bed for about two weeks. However, they’ve dressed it so I could take shower without any problems or infection. After slightly less than two weeks after the operation I was back at work (sitting on a cushion – it wasn’t particularly painful because I put the cushion so that the affected area was between the chair and the cushion, not touching anything). It did get slightly infected towards the end of first month (the affected area was relatively small I should strees), but I went to the doc who operated on me straight away, he disinfected it, then went for 6 daily dressings and after that I was without problems.He said I would be able to do sports fully again for sure 2 months after the operation, but I left it for a little longer just to be sure. Anyway I was up and walking from and to work and socialising 2 weeks after the operation.

      I agree with you that I would not want to do a full blown excision – it seems that it does not prevent recurrence and is obviously much more painful in terms of recovery time and scars. Just go for the cleft lift/similar procedure (do your research online) which at least based on my research have lower probability of recurrence and you will be both better off in terms of time and in terms of results!

      • Fiona says:

        Hi just wanted to add that the cleft lift may be successful for getting rid if the pilonidal sinus infection but is not always effective in stopping the pain.

        I have had a total of 5 operations over about 10 years to treat this condition the last being the cleft lift approx 2 years ago, which has left me with a hidious scar, ever since my last op I have been suffering with pain around my scar tissue and cannot sit for long at all and my life is still being affected. I have been on all different strong pain relief medication and still no joy. I am finally being referred to a pain specialist but am not going to get my hopes up as nothing has worked yet, including being on amitryptyline and now gabapentin medication, previously have been on tramodal, dihydrocodine and several others which have no effect.

        This operation has been successful to some people but not all.

  4. John says:

    Hi Ralph, I agree with Becky, it’s better not to risk anything and do the surgery, just make sure you do the right kind & with the right doctor (i.e. a cleft lift/Bascom flap/etc., not full blown excision). Your cyst sounds actually in a rather advanced state, I had mine for like 10 months, it didn’t smell or hurt, but it would discharge pretty much daily, so I wouldn’t wait.

    I had a cleft lift done by Dr Emin Carapeti (posted about it in another comment) in London Bridge hospital 6 months ago and so far it has gone well – no re-opening, or pain, or discharges. Just be careful about what surgeon you go with – I chose Dr Carapeti because he specialized in pilonidal sinus and had published some papers on his own flap or something, so he was well aware of the newer procedures.

    If you go just to NHS it’s a very hit-and-miss kind of thing, so I’d rather go on private insurance if you can.

  5. Becky says:

    Hi Ralph,
    I had the same as you very tiny not something huge but tons of pain from it a few months ago and went straight to a colon and rectal specialist and had the surgery. Theses things are not to be fooled with, the longer you wait, the more major of a surgery (or multiple surgeries) you can potentially have. My surgery was done and wound left open to heal, meaning no stitches (that gives a much better chance of it never ever coming back because all the hair and bad cells are removed and it heals from inside out with new skin. Trust me, I’m a 32 year old female and I do not handle pain well!! But, it was not that bad and now, I’m going on 18 weeks since surgery, I’m 99% healed I barely have a scar and I have no issues at all!! Best decision I ever made. I had a top specialist and he knew exactly what to do. These cysts should not be ignored. I had mine for one week and did surgery right away and I want to be sure others understand this is what to do!! Keep me updated!! I hope my story helps!!

  6. Ralph says:

    Hi,

    I’ve been reading up about pilonidal cyst. A lot of people seem to say that theirs grows and starts to become more painful until it pops. Well what I have is just a small hole. It’s not painful and doesn’t pop, but it does bleed and drain puss and has a bad oder. When I’m working and it drains I will get a bad rash and have to clean it and put a rash cream. I’ve had it for almost 5 years now and it hasn’t seemed to get worse. I’m not sure if this is still considered a pilonidal cyst. I am tired of it because of the oder I give off and the rash I get, but I do not want to have a major surgery just yet and am looking for alternatives. My guess is its hair that has giving me this and needs to be takin out of the hole. Please help me if you can. Any advice from you our anyone one else that has a simular problem would be appreciated.

  7. Hi Colin,
    can you add my site in ‘external links’?
    I request you to add http://www.omayurvedicclinic.com/pilonidalsinus.html
    Thanks for this forum.

  8. Franklin Stewart says:

    I just went through my second pilonidal cyst surgery. I’m 35 years old. I had my first one about 2-3 years ago. I just so happened to be in the hospital for something else when it developed. I had no clue what it was. I just started having really bad pain in my lower back. I didn’t think much of it as I regularly have back pain, but after a couple of days I knew something was wrong. I don’t think I’ve ever been in so much pain. I couldn’t sit, stand, lay down, or anything. I was miserable. I never really realized it but that area is the center of your body. No matter how you move you use and put pressure on that area. I told the dr. the next morning during his rounds what was going on and how much pain I was in. He looked at it and told me it was a pilonidal cyst. I was like what a cyst seriously? Ok, I told him no problem just lance it then. Oh no it’s not that simple at all. Next thing you know they’re bringing surgeons in and rush me to surgery the next morning. Now here’s where it gets weird. I’m not sure if they did a different type of surgery this first time than the second or what. Granted, I was in the hospital for a few more days after the surgery so I know it was a cleaner environment, bacteria wise, and I actually had nurses there to check it and change the dressing. I don’t remember them changing my dressing that much though. All I know is I had the surgery, barely had any pain afterwards, and no complications at all. A few days later, I was released from the hospital, for the other thing they didn’t keep me because of the cyst, and I went home with no problems and nearly forgot about it. Fast forward two and a half years, and it came back with a vengeance. I’m not kidding this thing had to be as big as a tennis ball. Now the first one never busted open so I didn’t even realize that lovely part of it. I went to the e.r. and I told the nurses I knew what it was that I had a history. The nurse said well let me look at it and I’ll be the judge. Now I’m not exaggerating, I don’t know why but it chose the exact moment I pulled my boxers and erupted like a volcano. I’d have give anything to see that nurses face. She went crazy trying to get it covered and get me to a room. I really didn’t care at that point, it was the first relief I’d had from the pressure in a couple days. Now, I went to the e.r. instead of my primary because a. they had just changed mine and I couldn’t stand the new one and b. I was hoping to get lucky and they’d take me straight to surgery like the last time. No such luck. I had a medical student who had obviously never actually dealt with one. He told me I would have to go see a surgeon and have them schedule an operation. Now this bright kid tells me its great it’s draining on it ‘s own but they’ll still have to do surgery, but he wants to lance it open more. I asked him if that would keep me from needing surgery and he said no. I asked him why if it’s already draining and I would need surgery anyway why would I want him to cut on me for no reason. He didn’t really have an answer for that. So the next day,I go see the surgeon. Well he wants me to take antibiotics for 10 days first. You want to talk about a miserable 10 days. But, finally the day of the out patient surgery got there. I had the surgery no problems at all, this was a little over three weeks ago. I was barely even in pain. I even threw thr prescription for percocets away( Big Mistake). The dr. says he wants me to keep it dry for 48 hours and keep fresh dressing on it and come see the np in like 5 days and then him a week after that. Well, I’m a single man who lives by himself. Do you have any idea how hard it is to put a dressing on on your tailbone by yourself? Not to mention the fact that even when someone else who knows what they’re doing puts a dressing on someone in tat area it’s hard to get it to stay on even then for more than five minutes. I did the best I could though and I think I did a good job. Well, I went to see the the np and I told her I don’t think something is right. It hurt a lot worse then than it did right after surgery and I was noticing that when I took the dressing off now instead of just looking like blood it was looking like pus. She looked at it and said it looked a little red and the was some color to the drainage, but she thought that it was just inflammation coming out and it was actually a good thing. Well, two more days go by and it started hurting worse than it did when I first got the cyst before surgery. My whole body started aching, I was running a fever, and the drainage was getting worse. I called the dr’s office and they told me to there first thing in the morning or if I got to bad to go to the e.r. By the next morning, the drainage was so thick it didn’t even look like fluid any more and it was this nasty color. Obviously, he told me it was infected and he put me on antibiotics and told me to keep it clean and dressed and come back in like 5 days. I was in so much pain I can’t even describe it. I went and saw him 5 days later and then 3 days after that. I asked him why I was having all these problems? I was doing everything I could to keep it clean. He explained that that wasn’t the problem that for one that’s a very bad area for bacteria plus when you sweat it all runs through that area carrying germs and bacteria with it. He removed the sutures and told me the infection was clearing up but the upper part of the wound was still pretty bad. So he put packing in it and dressed it. He told me he was going to send home health care out everyday to change the packing and dressing. He said to keep it dry and not to take a shower but a sponge bath. They said home healthcare should call me that evening to let me know when they were coming the next day. That was on Thursday. They never called. The next day I waited until finally 2:30, I called the dr’s office to see what was goind. The nurse checked and said they didn’t realize that company didn’t take my insurance, but they had found a company that did and they’d be out Saturday. She said for me to continue to not get the packing wet to just take a sponge bath. Saturday and Sunday both came and went and the company never showed up. Of course, the surgeons office was closed. So Monday comes and they finally show up by this point ID had the same packing in since Thursday and I hadn’t taken a shower only sponge baths. So the nurse changes the packing and I ask him can I take a shower now. No, only sponge bath. So on Wednesday I go see the surgeon and everything is starting to look good. Thursday, I get a new at home nurse and he tells me he’ll let me know about an hour before he gets there so I can take a shower and then he can repack it. He says it looks good the infection is gone now they’rr just waiting for the wound to heal. Then it happens,3 days ago on Saturday, another cyst forms right above the wound and it’s now bigger than the first. He says its ok for now at that point because it was draining and not infected. Sunday comes and damn if there isn’t another smaller one right below it. Same thing though it’s draining and not infected. Then yesterday the first one has gotten huge and the dtainage is starting to change colors from clear to that pus color. Then I think I feel another one. The nurse comes and I tell him. I ask if he can see a third one and he tells me I hate to say this but I can see atleast 5. I have to go back to the surgeon tomorrow and I know I’m going to have to start all over again with surgery, only this time with multiple cysts. Have you experienced anything like this? and Do you have any advice to help me out? Any advice or knowledge would be greatly appreciated. Thanks

  9. Paul says:

    Well I’m back to update you folks

    I had my wound vac on for all of 8 days, my district nurse suggested removing it as there was no more fluid being removed. Back to packing the cavity under my stitches. My stitches were all removed except six pesky ones that were way too painful to go near.
    Three and a half weeks after my initial surgery and I went for my post op with the surgeon, not good! Back in three days later to be opened up again.

    So my surgeon opened up his previous effort and has attached the dreaded wound vac again. Now I have a wound that measures 8cm long, 2cm wide and 2cm deep.

    Four days post op2, the dressing changes for the wound vac are horrendous, I’d read about tissue growing into the sponge that draws the fluid away and was a little worried! I was right to be worried!. 2x500mg paracetamol, 1x500mg ibuprofen, 2x30mg codein and a double hit of morphine does nothing to dull the pain.

    If the vac heals me quicker I will bear the pain, however I have my doubts as to whether I’m going through this for nothing. I have that familiar pain that you know too well, it feels like I have another abscess growing off to the side of my current wound.

    Sorry if this doesn’t make a lot of sense but as you can see I’m on a fair bit of medication!.

    My current plan is to get somewhere near healed then be referred to the NHS trust in Portsmouth who specialise in the bascoms operation, hopefully they can help as I do not want another surgeon blindly hacking away at my backside because he’s too proud to say he doesn’t know enough about the disease to help.

  10. maree says:

    im a female of 25 and never thought id get a such an embarrasing thing, had my pre appointment before the operation and they gave me 2 options which they didnt explain properly so i chose the stitches, where they opened it up and and done a flap repair, and now im on a drain so so embarrasing that i had to go home with it and eating and looking at my blood bag is a turn off!! haha!! really putting my ego down!! but just wandering if sitting on its a bad thing and how many cases where people have had a success with healing and stuff, it really bugs me that i cant have proper shower and when would anyone suggest it safe to have a shower? not that im dirty, but i hate these bird baths, lmao!!

  11. Paul says:

    I’m lying here in hospital one week after having scar tissue removed to prevent me from getting anymore cysts!.

    1997 was the year I grew a tail, within three days it appeared and was surgically removed. The wound was left open and packed on a daily basis for six weeks!.
    I stayed relatively pain free for the next twelve years, just the odd bit of swelling which would drain it’s filthy smelling gunk after a day or two. Then back to normal……

    2009 boom like freight train I was hit with that familiar pain but no swelling, which was a bit worrying as if it doesn’t swell it won’t burst……surgery in and out, three weeks of packing and back to work.

    2013 bang there’s that familiar pain again, head to the docs then straight to A+E, out the following morning four weeks of packing back to work!
    What followed which I hadn’t had on my previous two surgeries was, constant pain, repeated swelling up under the scar, repeated draining of the cyst I’d had “removed”. Perfect for Christmas Day ” darling should I get the presents for us to open in bed?” “Err no sweetheart I’m going to strip the bed and jump on the shower” Merry Christmas from your pain in the Ass.

    Never fear my surgeon offered me some corrective surgery to give me an 80% chance of fixing my poorly backside!
    I’m in let’s go I thought, four months after what I consider to be a botched attempt at excision and drainage here I was in hospital, on a planned visit for some corrective surgery! As the surgeon talked me through his plans for my backside, I began to get a little concerned, he wasn’t filling me with any sort of confidence whatsoever!. You may think me a Pratt for questioning this learned gentleman before me, BUT in the last seventeen or so years I’ve done a rather large amount of research on this subject, and my surgeon is telling me the procedure has an 80% chance of success! Wrong, what you’re suggesting is 50/50 at best( I calmly tell him, in my head! After all I’d be stupid to question him!? Right?).

    Well instead of going with my instincts and walking out of there, I stayed and had the surgery, out I walked 17.00hrs with a groggy recollection of my surgeon explaining that scar tissue was removed and I was stitched up. How long are the stitches on for? I asked, Two weeks came the reply! Well if it fixes me it will be two weeks well spent lying on the couch with Netflix!.

    Day three after my super duper fix me up op, the pain was excruciating, so bad that I couldn’t get into bed, on the couch or even stand up very well, what followed was a double dose of codein, wait half an hour and fall into bed, then have my wife try to pull and shove me into a sleeping position. Next day same pain and same problems, however the afternoon brought some joy, with the pain subsiding enough that I could get up and down from the sofa without screaming the house down!.

    The reason the pain had subsided was to become oh so apparent, oh so quickly!.

    Days five and six were mostly filled with the mopping up of blood from between my buttocks, questioning whether this was right or not, as neither me not my wife had ever had stitches before.

    Day seven, I’m off to the GP’s at four in the afternoon, hoping they’re going to tell me all is well, knowing I’m screwed and heading for another operation.

    Both my GP and a practise nurse looked at my wound and refused to touch it, sending me off to A+E. Five hours later I was heading home(via McDonalds for my final meal, it was 10pm and I’d not eaten since lunch so don’t judge me). Come back tomorrow and we will open you up again was what the consultant told me.

    07.30 day 8. In hospital waiting for my next round of surgery, consultant has changed his mind as I’m half healed, the new plan is to Vac my “wound” to give it a clean and send me on my merry way!. Ten hours pass before anyone comes to Hoover me out, never mind though the wife’s at home ready ex filtrate me from my prison back to the comfort of the couch.

    Pardon me? What was that? I’m going to be attached to what for two weeks?.
    Yep it isn’t something as simple as I was led to believe.

    Ex filtration cancelled, prison for me, I’m now attached to a pump which is sucking at the bottom of my wound, removing a giant blood clot that had formed in the cavity under my stitches. Gross right? Yep! Also incredibly painful, especially since pain relief is only administered every six hours rather than four( like it is at home).

    Sorry if I’ve gone on a bit, I’m currently lying in a hospital bed hooked up to pump I have to carry with me until I’m healed feeling very sorry for myself!

    This is the first time I’ve come to hospital feeling fine and left in agony.

    I fear a long road ahead.

    Good luck fellow sufferers, don’t let the cysts grind you down.

  12. Kale says:

    I had the operation on May 3rd. 2013. Just this week I’m starting to feel pain within the scar tissue. I shaved the hair around it on March 5th, 2014 around midnight before bed. The scar tissue area is all red and inflamed. The scar tissue feels like it has a bit of fluid in it now. It’s too hard when I’m always sitting g around oriftkng weights… Irk if I just need to get it lanced. Or if I should just not worry about it as it’s only been realy sore due to the winter and all the furniture I sit on is really stiff

  13. Linda says:

    Does anyone have any advice for a pilonidal cyst sufferer who hasn’t had surgery (yet!), doesn’t want to have it and wants to heal the abscess from the inside out?

  14. Becky says:

    I must say, reading this has really scared me!! About a week ago I started having pain on my tailbone and just thought I had overdone it at spinning class, so for the next four days I just soaked in the tub and took Tylenol. Finally, the pain was so insane (couldn’t walk, sit, drive) that I went to my doctor and they told me that it was this cyst-never knew about it before. They gave me antibiotics. After another four days and a weekend the pain was still insane so I went back and said I need something more. They sent me right away this past Monday to a Colin and rectal specialist (I live in the U.S.). He took one look and said yup, we need to get this out. He said it was infected but luckily I only had it for a week or so and he was able to numb me and dig the cells out without having to give me any stitches and wants to see me back in two weeks to be sure it healed properly or see if he needs to remove more.

    I really hope it doesn’t come back forever like some of the stories I read here!! I’m healing well but the pain is bad and my butt is also bruised from the shots making it hard to get comfy. My dad also had these cysts and had surgery 30 years ago and it never came back so I hope the same for me!! I hope because I didn’t wait long that I have a good chance of being ok, but I feel really scared!!

  15. moore says:

    Hi, I want to share my story abut this cysts.I have had this cysts for two years and tried everything except surgery, but I decide to loose weight and tend to eat more vegetable, after a few mounts my cysts start to be smaller and smaller now it is very small without pain like i dont have it … it worth to try I think

  16. this is very informative and explains about the surgical infections and surgical dressing during skin related surgeries

    his is very helpuful and explains about prevention after surgery great..

  17. acm1990 says:

    Hello, i think i have a pilonidal cyst, i thought it was just a pimple that happens every now and then, so i looked it up online and it fits the symptoms, but now that am reading about it, i am getting really scared. I am doing my masters in keele university and do not have the time for surgical operations, and i really do not want a whole in my butt, i am panicking. The pimple am having is not big, its like a small jelly bean…. It happens irregularly. Sometimes every week, sometimes it takes a month or 2 or 3 to comeback. It started around a year ago. I am an international student, have exams and essays now, so i don’t have much free time to check with a doctor. Please text me
    Thank you for your time

    • Keke says:

      Please get it checked as soon as possible.. I was scared when I found I had something like a pimple and didn’t wanna go to the doctor, I waited 2 years hoping it will never come back, but it did! I had my surgery 3 weeks ago and believe me it’s not that bad! Waiting will make it worse. Please go to the doctor and don’t be scared.

      • rc39k567 says:

        I am a teen living in canada. I have had a cyst for a while maybe a year and a half or so anyways. Lately it hasnt been that bad like the bleeding but i’ve developed a bump above the cyst. I havent gotten srgery yet but im going to soon and the bump above the cyst popped and now the blood is coming back but not from the cyst. I dont know what to do. Can anyone help??

    • Pratik Ahiwale says:

      the surgical procedure is 40-50 percent successful as said by my doctor i am also having pilodinal sinus

  18. Aldo Christian says:

    i think i have pilonidal cys, just started reading aboutt it, i thought it was just a pimple that occurs from time to time but now reading all the comments,i am really scared. i am 23 years old, doing my masters in keele university..

  19. John says:

    I have had a pilonidal sinus diagnosed by a GP about 9 months after I started having discharges (I just didn’t go with it earlier since there was no pain), and in the end I decided to go with Dr Emin Carapeti at the London Bridge Hospital (private/paid for by BUPA, although I think he also does some NHS consultations), for who pilonidal sinus is apparently one of the specialisms. Overall I would recommend him, although I had my operation done in November 2013, so there is still time to see if it comes back.

    I had a Bascom procedure/cleft lift flap done by him, which is supposed to reduce recurrence while also not leaving an open wound afterwards. Pain wise it wasn’t bad, I went for a dressing change in 1 weeks time and it was ok, then it continued to heal up well. About 3 weeks after the operation I started having small discharges, which Dr Carapeti told me to get disinfected and dressed daily and gave me some antibiotics. After about a week this healed up and right now it’s looking and feeling ok, without much pain coming out of it (I do still sit on pillows and such normally). So overall it’s looking good but still, judging by the experiences on this blog, early times.

    • John says:

      Just wanted to post an update 3 months later – the wound healed very well and I have had no problems with it so far, so still very good… Hope it stays that way!

      Anyway if you have private medical insurance I would recommend Dr Carapeti at London Bridge, I am always quite wary what doctor to go to and overall my experience with him has been positive so far.

    • Sarah says:

      hi john
      Have you got any recommendations on what sort of pillow/cushions you use?
      I have an absolutely awful chair at work (unfortunately office job=8 hours a day sitting), and with all the sitting, my cushions don’t seem to work for too long!
      I don’t fancy spending 30/40 quid on a ‘high tec’ cushion if it isn’t going to work…
      do the ring ones work, or the coccyx ones, or do you just use an everday normal one?

      • John says:

        Hi Sarah,

        not really. I sometimes sit on the standard cushions from Tesco (folded half-way through to make for a thicker layer) and switch it a bit from time to time with a 20 GBP coccyx wedge from Amazon. I wouldn’t say the coccyx wedge is somehow better, definitely not for the price!

        What seems to help the most is to take one of the cheap cushions, fold it like I said above and put it a bit more forward on the chair underneath you, so that it touches your legs. That way (at least for me) the pilonidal affected area isn’t actually sitting on anything because it’s between the chair and the cushion.

        Hope that helps

  20. kierra bellamy says:

    Kierra
    17 years of age
    Hello . Thank you for making a blog about this. I’m too embarrassed to talk about it with others, but anyway I’m not sure if I have pilonidal disease or the just the cyst but my bottom has been hurting severely since Monday and I noticed that a lump/bump formed . It was very hard for me to walk and to even sit. I have had this type of pain before but I wouldnt sleep on my back for a couple. I have been putting calmoseptine on it and I don’t know if it is working or not. But I just wanted to know if I may have pilonidal or not.
    of days and then the pain and lump would go away. Here it is Thursday (in the US) and I’m still having the pain.I looked and felt around for the hole that everyone is posting about and I don’t have one. I have been putting calemostine on it, because my mom thinks it is a bed sore,but could you please help me. I am afraid that it is something else and I will have to go through a traumatic surgery. Thank you!

  21. Becca says:

    Hey Colin
    I’m a 27 year old female and I have PS
    It first started five years ago I went on a boat ride with friends and the next day I felt pain on my tailbone within two days there was a massive painful lump the skin was not breakable and I could hardly stand up straight so I was rushed to the ER where they tried to numb the area which did not take and lanced it ( most horrible pain I’ve ever experience ) the relief was like no other but after a year I fell and broke my foot and it appeared again now imgaine a broken foot with a very painful cyst on top of that had lanced again this when my dr recommend surgery first surgery went great heal nicely had stitches and vac a year later it was back thought it was infected scar tissues but the pain got unbearable and the nightmare began again so on to the next surgery which was the same but recovery was terrible it took nearly four months to completely heal with draining and bandage and packing changing everyday it was beginning to feel hopeless not to mention very bad scarring now I’m on my fourth surgery into two weeks and I’m still in pain and started bleeding I was starting to think I was the only person who suffered so much from this disease and just about gone crazy from it I want my life back it really taking a toll and very expensive has anyone had any good results and is this nightmare ever going to end

    • tia says:

      you should opt for the ayurvedic treatment i.e. Kshar Sutra therapy…it is less painful ,requires less recovery time…….and is the most permanent cure

  22. Rhea says:

    i am a 26 yr old female. i have pilonidal sinus. it is yet to be operated. i have been trying to conceive since last few months but no success. can pilonidal sinus be the reason behind it.

  23. Karen says:

    I had surgery done for PS on the 14th of November, the one where they stitch the wound up. Today I had the stitches removed and the surgeon said it wasn’t so bad. There was a bit of discharge coming out and my wound was a little bit open – he said about a milimetre at the bottom of the stitches.

    He said if it doesn’t close then I would have to pack it. My question is there really a chance of the wound opening up again? I’m terrified.

    • irene says:

      Hi Karen, I am a 43 yr old female and I just had pilonidal surgery on November 18th. My surgeon stitched mine as well vs leaving it open. I have a opening as well and have the same concern of it coming open all the way. I was just at the er yesterday because the pain, pressure, and drainage was awful. I took off work for two wks right after surgery, just went back to work last week and now because of this i can’t work for another week. I think the key is to give it plenty of time to heal and don’t lift Anything over 15 lbs until that area is totally healed.

  24. m j moore says:

    Hi. I’m so relieved to see your blog! I’m 41, and have had pilonidal synus disease since I was 16, sometimes getting a couple in the same year. I’ve had thirty five pilonidal cysts and one pireanal cyst removed in total and now have my thirty-sixth (after a break of nine years, the longest break yet). I’ve been on anti-biotics for a week, and they have stopped the pain, but I am bleeding quite a bit and suffering abdominal pain and numbness in one arm. I’m visiting my doctor tomorrow but was just wondering if you had ever experienced these additional symptoms. I’m so desperately depressed about this and feel like I’ll never have a normal life. I’m job hunting at the moment and it looks like I’ll have to abandon that (again) for a while.

    • My friend, don’t get so depressed . I think you should go for ‘kshar sutra’ treatment in India. See more information on http://www.omayurvedicclinic.com/pilonidalsinus.html
      My best wishes for your health.

    • Colin says:

      My word. 35 pilonidal occurrences is certainly the most I’ve ever heard of. That’s horrendous, I’m really sorry for you. I can say I’ve never had the secondary symptoms you mention but after such a long history with the disease I’m sure my clinical situation was never as bad as yours. I don’t think there’s much I can say to help, but I do hope this is the last time you have to deal with it and that the symptoms are temporary and get sorted out.

      Best wishes.

  25. Beverly says:

    Thanks for sharing– my son had first surgery 4 years ago– cleft lift. But crackline reopened after surgery – healed up on its own.. But months later– rubbed easily and reopened– couple infections as well — we are contemplating–surgery. 3.. Any advice?? Thanks for help

    • Beverly says:

      Does anyone know of a sterile cream that can be used between the buttocks—while the crackline is still trying to heal–slightly open?

  26. Jordan says:

    I had the surgery about 5 weeks ago they opened it up and then stitched it back up once they had finished. A few days later the stitches started to come loose and the hole was apparent once more. I’m now getting it packed everyday but it seems to just be the same it’s been infected twice and just wanted to know if anyone had been off work for a while because I really can’t afford to be off work for months many especially when I work in a retail environment and involves a lot of lifting and standing for a good 9-10 hours a day? many thanks Jordan

  27. Lay'quilla parker says:

    Omg im 23 years old i have 2 kids and i just had my first surgery i feel like im gonna go out of my mind taking out the packing is really tough for me becuz the packing is sticking to my sking i soak in the tub but once it gets to the end of pulling the packing out my skin gets stuck to it so everyday im in the tub just crying trying to get it off my skin it hurts really bad and i just dint know wat to do im cryingnin excruciating pain every single day idk wat to do

  28. David says:

    Hey Colin,

    first of all, kudos to you for creating this site. Sifting through the web and the various “oh it’s so easy and it heals in 3 weeks” assurances I see from the doctors on the internet was fruitless and I’m glad I found your website.

    I just turned 21 on 15th October and I’m currently working at a video game retail store. A year and a half ago, I went to a dune buggy racing event as a contestant. Looking back, I should’ve participated in the adjacent quadbike race… As you can imagine, racing in a dune buggy on an off-road track is bumpy. VERY bumpy. A month after that, my first flare up manifested itself.

    It hurt like a bitch. But after two days I just decided to treat it like a zit and simply made it pop through sheer brute force. After that, once every two months it filled up again and I always simply popped it without much difficulty or pain. There’s one difference though, my pilonidal cyst isn’t filled with pus, but apparently lymph. When I pop my cyst, the lymph comes first, a completely clear liquid that doesn’t stink at all, after a while it comes out mixed with blood a little bit.

    Anyway, a week ago it filled up again and now it simply won’t pop, no matter how much force I exert on the area. Also where there was previously a miniature hole I could feel with my fingers, there’s now a small pimple, like a regular zit. I went to a surgery doctor (I actually used to work in that hospital as an EMT for some time and I know the surgeons personally) and she prescribed me Vishnevsky Balsam, with probable surgery eventually.

    However. I love my job at the video game retail store and it pays great, but there’s unfortunately just three of us working there. There’s no way I could be out for three weeks or more on a short notice. I was originally planning for the surgery in February 2014, this fall is filled with huge releases like PS4 and Xbox One and all the launch games for the consoles. No way I can be on a sick leave for so long with such releases coming and the number of sales and customers about to rise tenfold. And I don’t want to lose my job for being out of work for such a long time.

    Is there anything I can do at home? My mother is a nurse at the same hospital I went to the doctor to and where I used to work. Can I ask her to lance the cyst or something? Did somebody figure out a way to pop the cyst at home? I heard about hot facecloth method, but that unfortunately didn’t work. I need some makeshift solution to carry me through to February. :/ It isn’t too bad yet, the pain is just a very minor annoyance and I’m writing this sitting down at my computer, but I’m worried if I’ll last the 4 months.

    Thank you in advance for the advice, and I hope your own fight is over with the 4th surgery and it will never occur again. After all it’s been over five years. My battle is just about to begin.

    All the best,
    David

  29. Mayank Khubchandani says:

    Hello … I am a 18 year old boy suffering from pilonidal sinus want to know that is their another way to cure this or only surgery is the one practice to cure it .The thing is that this time i am studying in college and i don’t have free time that is required in this surgery for curement and also the cost of surgery is little high.
    Please advice me the best option for this.

    • My friend, in the treatment of pilonidal sinus cure is important than the cost. You can go for ksharsutra treatment than surgery. You can cure doing your rutein work and without antibiotics. You have to give time to your body to heal the wound. You can get detail information about ksharsutra on http://www.omayurvedicclinic.com

    • Jahfree says:

      Hi , I have healed Pilonidal Cysts , if you follow this treat meant for at least one or two weeks this pain will leave your body for good.Jah Bless
      1. First Step you take Organic local Turmeric and grind it up till a Griddy Paste , Put it on a Bandage with Turmeric on it & cover the Cysts ,All day long, Now do not sit on your butt with having a pillow or some thing soft to sit down to keep the blood flow this is Key!! (Blood Flow) you will have to Message your tail bone daily to keep the Blood Flow out & in for Healing to occur. you must Also exercise as much as you can to keep you heart pushing new blood cell to this Area tailbone,Buy a Vibrating Messages device this will help the Best if you can get that have This to message the tailbone .this will create a maxium Blood flow you need to heal this will make it drain out soon the later . dont ever put garlic like some say ,,,it will inflame the cysts badly and worsen the Pain
      2. this should be in you diet . lots of ginger & turmeric any way to get it , Smoothies is the Best , with lots of ginger , you see this Ginger/ Tumeric has anit -fungal & Anti- Viral to fight the Puss from inside out, Drink aloe Vera juice this can help also

      Now remember dont Give Up!!! Tumeric every day as much as you can This might sound Crazy ,But i took the time to Share my secret with you ,,jah jah bless …keep me Updated also and you have any Question feel free to ask ,,good luck

  30. tarryn says:

    I went for a pilondal sinus in march where they just scrapped my sinus chube to try save it. I’m 17 years old and I’m female. It started on sunday where I got headaces and now its getting sore again but its not forming a whole.? Isit starting again or is it just something silly.. I need to know as exams are around the cornor!?

    • Jahfree says:

      You need to Start to Change to diet now , or it will Re occur ,,Surgery is not the Answer nor it not even western medicine that can help you . think natural , Mother nature has every thing you need to heal this , you can start this treatment now even if its not Back yet to Assure that that PAIN will not come back in your Body

      I have healed Pilonidal Cysts , if you follow this treat meant for at least one or two weeks this pain will leave your body for good.Jah Bless
      1. First Step you take Organic local Turmeric and grind it up till a Griddy Paste , Put it on a Bandage with Turmeric on it & cover the Cysts ,All day long, Now do not sit on your butt with having a pillow or some thing soft to sit down to keep the blood flow this is Key!! (Blood Flow) you will have to Message your tail bone daily to keep the Blood Flow out & in for Healing to occur. you must Also exercise as much as you can to keep you heart pushing new blood cell to this Area tailbone,Buy a Vibrating Messages device this will help the Best if you can get that have This to message the tailbone .this will create a maxium Blood flow you need to heal this will make it drain out soon the later . dont ever put garlic like some say ,,,it will inflame the cysts badly and worsen the Pain
      2. this should be in you diet . lots of ginger & turmeric any way to get it , Smoothies is the Best , with lots of ginger , you see this Ginger/ Tumeric has anit -fungal & Anti- Viral to fight the Puss from inside out, Drink aloe Vera juice this can help also

      Now remember dont Give Up!!! Tumeric every day as much as you can This might sound Crazy ,But i took the time to Share my secret with you ,,jah jah bless …keep me Updated also and you have any Question feel free to ask ,,good luck

  31. Hi Colin . Im debbie aged 33. I had my first incision & drainage age 18, another incision & drain a year later ( this would have been excision but i was 28 weeks pregnant and they wanted to minimise time under anaesthetic) Age 20 i had a bascoms procedure, this was the best surgery ive had because I had no packing, the only problem I had was that the wound over-granulated( healed too fast) and i had to have silver nitrate applied 3 x a week for about 2-3 weeks. I had no problems with my sinus for 10 years !! I fell backwards onto slabbed steps badly bruising my bum age 31, from then on I started getting flare ups where id be given antibiotics and it would clear but these episodes went from once every 4-5 weeks to once every fortnight .. Im a nurse myself so spoke with one if our surgeons who said he would fix me. He did not know and could not tell me whether he would close the wound until he had cut into it. When I came round he told be the sinus was very deep and he had to excise almost to bone so he had to leave it open. I had a huge open excision wound and was off work for 3 months. I hoped that would be me sorted but that was 10 minths ago and im having monthly flare -ups again. . It seems some people are lucky, i cant help wonder if i was one of the lucky ones and had i not fallen maybe id still be ok. I haven’t really given u any helpful advice there… Just that I rate the bascoms procedure I had . It is worth noting – others on here have said what I had done was not bascoms however its what was written in my notes . Debbie

    • Neil Malcolm says:

      I shaved my butt about 15 years ago and to this day I still have an ingrown hair which leaves pussy smelly resid ue at the top of my anus. I dont know what to do about it. Dr says it wont kill me but it stinks. Can u help.

  32. beth says:

    i first has pilonidal surgery a year ago they left it open and i had it packed for what felt like ages! after it got to 1cm they stopped packing it and it just healed over the top but not inside!

    after having recurring sinus problems over the last year and it infecting and opening back up again yesterday they finally opened it back up and stitched it but i didnt really have the process explained to me too well! they said to take the top dressing off after 48 hours and to leave the dressings underneath on and then go to my doctor to have the stitches taken out in two weeks? what is this method called is this the flap method? also can i lay on my back as im finding it uncomfortable on my side?

    i feel that after reading a lot of other peoples story’s that i have not been told the long time affects and problems this can cause i am only 21 and im finding it difficult for having time off work as im trying to start my career but having a lot of time off with my previous job resulted in me feeling pressured to resign! i am due to go back to work after a week this time as i cannot have too much time off due to bills and rent to pay!

    • Patricia Kalandrani says:

      My 23 yr old,slightly overweight daughter, has in one day gone from upright, working, happy to unable to walk, sit, move – we now know this is an infected pilonidal cyst (abcess); she has no sinus to the outside to drain (apparently 50% don’t create sinuses) – she is on the fourth day of double dose high strength antibiotics. Everyone we find on the net has had numerous interventions over some time … has anyone gone straight in for the bascom procedure and solved this in one??!!
      It seems that each gp follows a track of antibiotics, lancing, surgery ?open wound?closed flap? and then in more recent research the (modified) bascom procedure…? At 23 in a career (which, ironically has seemingly exacerbated an issue she never knew she had …. driving 25,000 a year….) … it appears that if she could get through the system in one step she may not have to compromise her life for such a long period?? Any advice, ideas…. trying to find a surgeon in cambridgeshire – or anywhere really who really understands …
      Thanks to any replies

      • You can go for ksharsutra treatment which can cure your problem. For more information visit http://www.omayurvedicclinic.com

      • Jahfree says:

        Do not do Surgery this Will NOT Fix the Cyst
        I have healed Pilonidal Cysts , if you follow this treat meant for at least one or two weeks this pain will leave your body for good.Jah Bless
        1. First Step you take Organic local Turmeric and grind it up till a Griddy Paste , Put it on a Bandage with Turmeric on it & cover the Cysts ,All day long, Now do not sit on your butt with having a pillow or some thing soft to sit down to keep the blood flow this is Key!! (Blood Flow) you will have to Message your tail bone daily to keep the Blood Flow out & in for Healing to occur. you must Also exercise as much as you can to keep you heart pushing new blood cell to this Area tailbone,Buy a Vibrating Messages device this will help the Best if you can get that have This to message the tailbone .this will create a maxium Blood flow you need to heal this will make it drain out soon the later . dont ever put garlic like some say ,,,it will inflame the cysts badly and worsen the Pain
        2. this should be in you diet . lots of ginger & turmeric any way to get it , Smoothies is the Best , with lots of ginger , you see this Ginger/ Tumeric has anit -fungal & Anti- Viral to fight the Puss from inside out, Drink aloe Vera juice this can help also ….This is a must ..take Honey on a Spoon full and Squeeze fresh Lemon Juice on the Honey and take that down like Cough medicine ..This is the Healer also so from the bees honey will release the Puss sacks that has built up around you tail bone and the lemon will kill the Infection.

        Now remember dont Give Up!!! Tumeric every day as much as you can This might sound Crazy ,But i took the time to Share my secret with you ,,jah jah bless …keep me Updated also and you have any Question feel free to ask ,,good luck

  33. Barry cain says:

    Hello Colin I am 34 male obv! In may I went to A&E with swelling at the base of my spine which turned out to be pilonial abscess I was rushed into surgery the same day and had it drained which was a relief but my consultant has advised me to have the karydakis procedure so I’ve been trawling the interweb looking for advice from others who have had the experience and looking for recovery times in particular as after the initial surgery I had 2 months off work (only my third month back actually!) so any advice and info you can give me would be appreciated
    Barry (Baz to almost everyone who knows me)

  34. Ankit says:

    Hi. My name is Ankit. I’ve read each and every lines of this blog. The big reason is I’ve been suffering from this diseases since last 3 years and 3 times surgery have already been made but still suffering from the same. Just wanted to let you know that last surgery was flap surgery but after 8 months later it is reoccurring. This time i am having boiled, swelling pit in natal cleft area and lot pain been there until blood drains out of it. when this happens i even can’t sit and walk properly. It feels better only after the blood comes out of that area and swelling gets reduced by then but after few days, again, it is reoccurring. I met a new surgeon this time and he suggested me that it needs surgery again in that infected area and keep that wound open until it heals by regular dressing by the physician himself.

    I must say this is going to be very hectic and painful even to continue the job as a software engineer but hope this would be the last one i will go through.

    I just wanted to ask that the procedure to keep that wound open and get it healed by regular dressing every two days or one would be right way? How long would it take to heal. I honestly say, I don’t want to make it happen again as already 3 times surgery done and that was it is very very frustrating.

    I am also thinking that once blood is drains from the existing area i am feeling well by then. Should go for surgery again?
    Cant i avoid surgery again and only through the regular dressing i can heal the pilonidal ? is it possible ?

    My situation is worst theses days. I just feel that i won’t get free from this PNS even after 4th surgery. What should i do? Please suggest.

    • You can go for ksharsutra treatment which can cure your problem. For more information visit http://www.omayurvedicclinic.com

    • Jahfree says:

      so Sorry to hear that four Surgery OUCH & this Will NOT Fix the Cyst
      I have healed Pilonidal Cysts , if you follow this treat meant for at least one or two weeks this pain will leave your body for good.Jah Bless
      1. First Step you take Organic local Turmeric and grind it up till a Griddy Paste , Put it on a Bandage with Turmeric on it & cover the Cysts ,All day long, Now do not sit on your butt with having a pillow or some thing soft to sit down to keep the blood flow this is Key!! (Blood Flow) you will have to Message your tail bone daily to keep the Blood Flow out & in for Healing to occur. you must Also exercise as much as you can to keep you heart pushing new blood cell to this Area tailbone,Buy a Vibrating Messages device this will help the Best if you can get that have This to message the tailbone .this will create a maxium Blood flow you need to heal this will make it drain out soon the later . dont ever put garlic like some say ,,,it will inflame the cysts badly and worsen the Pain
      2. this should be in you diet . lots of ginger & turmeric any way to get it , Smoothies is the Best , with lots of ginger , you see this Ginger/ Tumeric has anit -fungal & Anti- Viral to fight the Puss from inside out, Drink aloe Vera juice this can help also ….This is a must ..take Honey on a Spoon full and Squeeze fresh Lemon Juice on the Honey and take that down like Cough medicine ..This is the Healer also so from the bees honey will release the Puss sacks that has built up around you tail bone and the lemon will kill the Infection.

      Now remember dont Give Up!!! Tumeric every day as much as you can This might sound Crazy ,But i took the time to Share my secret with you ,,jah jah bless …keep me Updated also and you have any Question feel free to ask ,,good luck

  35. ryan says:

    I noticed mine 4 years before I had it removed, I just thought it was a spot gone wrong, so 4 years later I knocked it and it grew to the size of an orange , caught MRSA from hospital and was in for a week cos they cut into my sciatic nerve and into a vein so didn’t stop bleeding and had to have 3 daily check up’s , was distressing

  36. Barry perryman says:

    Hello. If you leave it you may make things worse. I left mine til the pain etc got worse. When they did remove it the hole they made was massive and I ended up with the vac machine and it took months and months to work. 6″ wide by 4″ deep and very painful. I think you should get it done and don’t do what I had done and left it to late. All the best

    • caz says:

      Hi can I ask how long this took to heal as I’ve just had this done and mean’t to be going on a cruise 27th oct I had it done Thursday just gone so 4 days ago?

      • Colin says:

        Depends on which surgery you’re talking about. The wound left open – about 6 months. But how long yours will take is a completely different matter it depends on so many things. Your surgeon is the best person to ask.

  37. Marvin Camilleri says:

    I would like to know if you can go out for a few hours with friends after few days?

  38. You are not only giving platform to the suffers to share their feelings but also doing social work through this blog. Keep it up. Thanks…

  39. Steve says:

    Hi everyone, my name is Steve and I have been a PS sufferer for about 3 years. Unlike some of you though I had 2 sinus pits in my bum crack that very rarely gave me pain. They usually drained about once every 3-6 months. I’m certain that sport has played a part in my disease as I play a lot of football and do lots of gym work including spinning classes. Anyway, about 12 months ago I felt a hard lump moving out from the lower sinus pit into my left bum cheek. It’s felt to me like superficial cysts. They did become somewhat painful when sitting and eventually 6 months ago it burst and left a 5 pence size hole in my bum cheek. This seemed to heal up over the next few weeks but the hard lump(s) running from crack to the hole were still there and still painful. I decided to seek medical advice via my Private Healthcare through work and the GP suggested referral to a Colorectal Surgeon at London Bridge Hospital. I saw him about a month ago and 2 weeks ago on the 2nd July I went in for what’s called a Bascom Procedure. Essentially what they do is cut down one bum cheek (away from the mid-line) then go underneath the sinus pits all the way through to the secondary tract I had in my other bum cheek. They clear everything out and then stitch up the pits and the newly created cut. The only wound I had left open was the hole in my left cheek which was left for any remaining debris to drain from. I was in for 45 mins under general anesthetic and home that evening. 2 weeks post op I had my stitches out and it’s all healing well. The only set back I have has was that on Tuesday night lots of blood poured out of the open wound again but the Cons said this is probably just old blood from the surgery and that it will heal in time. I was off work for 2 weeks post op and am now back at work with a Mepore dressing on my left cheek covering a hole which is about the size of a 20p. I had researched Bascom’s work prior to the surgery and it seems to get great results. I guess it might not be suitable for fingers crossed it will do the trick for me. Happy to chat to anyone about it if they have questions. I know this can be a very painful and embarrassing illness.

    • Colin says:

      Thank you Steve for telling your story so succinctly and great that it has gone so well for you. It’s easy to forget that lots of people have a good experience with Pilonidal surgery and a lot of the time it does seem to be with the Bascom procedure. I hope it continues to heal up nicely. All the best

    • T says:

      I have stumbled across this website, after doing some reserach in current management methods of treating PS and chronic pain resulting from such surgery. I first suffered PS in 1999. I went to school and just couldn’t sit. I was in the most intense pain and had no idea what was happening. I went to the doctor and was rushed to hospital for emergency surgery. My PS was the size of a small golf ball. My first operation was a closed one – 3 layers of stiches. A week in hospital, then I was sent home. 2 days later I was rushed back from severe bleeding in the wound. Another operation. This time the did a packing operation. I had to have my wound packed twice a day over a week or so until it closed up. A couple of months later, it came back and I had to have another operation. This time they stitched it again. And I had a drainage system. This operation was ok, except they left the stitches in for too long and it was hell to have them out. After this operation I started to develop chronic pain. I went back to the doctor, they started to give me monthly cortisone injections. It was still persisting a couple of years later. Another operation! This time is was to remove excess scar tissue that was wrapping around the nerves and causing pain. I was then put on sodium valporate for my spasms that began from the nerve messages from my brain to my scar area. Another year past, then I had another operation. This time to remove part of my tail bone that was becoming infected. It is now 2013. Many years later, I have visited pain therapists to develop techniques to deal with my pain – music therapy, meditation, yoga, just to name a few. I have had countless jobs since I cannot sustain jobs standing or sitting. I am currently looking at visiting a neurosurgeon to see if any new techniques are available to treat my pain. I cannot believe such a simple operation has turned my life upside down. It has been a roller coaster. The positive side of it is, I have become extremely empathetic to people with disabilities and chronic pain. I also changed my career path and I am on my way to finishing my degree and finding a job where I can work virtually, so I am not confined to an office and can rest when needed and work from a bed or comfy couch! I really feel for all of you who have posted your stories on this blog. I hope you are getting the support you need :)

  40. J Case says:

    I am nearly recovered from my first (and hopefully last) cyst. I’m certain it was due to prolonged sitting at work. Swelling and pain that was quite severe. I was treating it with otc painkiller and applying heat several times a day. Still was getting worse and I became desperate and began praying to St. Raphael for healing. (I’m not a religious person). It began draining within 24 hours with a horrid smell. Drained for about 3 days, I just kept cleaning with hydrogen peroxide, repacking with gauze & neosporin and gently massaging to encourage draining and continued petitioning St Raphael. Its been about 10 days and I’m close to normal and very careful about prolonged sitting.

  41. savana says:

    hello, I will be four weeks post-op tomorrow. I had a closed wound surgery done. my incision goes from about the top of my butt crack to right above my butt hole. it’s very long, it did get infected the first week, I was on antibiotics and I also had some type of allergic reaction to the material the stitches were made out of, I had to get the stitches out a little early. Last week it seemed like all was well and the healing was doing good, the incision was almost completely closed up and a light pink… last night I went to the movies and was having pain more so than normal, had my boyfriend check it and he said there was a little hole at the bottom of my incision right above my butt crack, and blood was coming out. not a lot though. the hole is about the size of a needle tip. it also drained blood again this morning… Im a little concerned now. also the entire color of the incision has changed from a light pink to a dark purpleish. any help?

  42. kirsty says:

    Hello, I am 18 year old female suffering with PD and I have had 4 drains and still waiting to hear from GP about further sugery to stop it. I feeel like they aree not doing anything or wanting to do anything to be honest and not really sure what to say or ask to my gp :)

    • beth says:

      best thing to do is go straight to a&e when it is infected as i kept going to my doctors and they just put me on antibiotics that did nothing went up A&E and was operated on the next day!

  43. katie says:

    Hi I just had surgery 6 days ago. My dr put a long lasting pain reliever inside my wound so for the first three days it was sore, but definately tolerable. The last three days on the other hand have been horrendous. I have an open wound that won’t stop bleeding. I’m supposed to put this antibiodic cream (silvadean) inside if the wound but I can’t due to excrusiating pain. My dr said I could go back to work on the second day…what a joke that was! Sitting & walking is very difficult. I have a dressing on it that I change twice a day. I’m eating pain pills like they are candy. Although I didn’t want to keep getting my absessed pilonidal cysts, I’m kind of regretting getting surgery..didn’t realize how painful and how time consuming the healing process would be! :'( I almost fainted when I had to unpack it today. I will not even try to repack it!

  44. Holley Eavis says:

    Hi my name is Holley. I suddenly got a pilonidal cyst in march which appeared almost overnight with no warning and i was rushed to hospital in agony as it started to poison my blood. As it has now been three months since the operation, i was expecting it to be almost completely healed now but it has days where it is very raw and does occasionally start bleeding again. It doesn’t bleed very much though. I am still having the dressings changed regularly but it is becoming very frustrating constantly being in a small amount of pain and not being able to sit down or sleep on my back. How long did it take for you to recover from this and is bleeding still after 3 months normal? I have gone back to the doctors and asked a few times but it seems that depending on who i speak to i get different advice which often is the complete opposite of what the last person said. As no one else i know has had this im very worried about it

    • natalie says:

      I was in exactly the same position I’ve had 4surgerys and now my husband has the same thing . I also had blood poisoning . don’t worry it does get better I was off work for over a year with it .ask your doctor for a mild steroid cream that you can apply yourself that really helped me .but I will say if your really worried just go to hospital .they might want to reoperate if it won’t heal properly .I hope its better for you soon its a awfully thing to put up with .x

  45. Hi. I’ve had a pilonidal sinus probably for about a year. The first problem I had was an anal fissue which has gotten much less severe in terms of discomfort as I’ve lost weight. The PS just produces puss/snot (yellow ish colour) and occasionally smells (once a month) but isn’t causing any pain. When I have used dettol (mild for cleaning etc) it really does seem to help and stop it from smelling.

    I’m a bit worried as the person I saw at the hospital (I’m not sure if they were a surgeon or what) didn’t say very much and basically said about opening/wounding it and putting a camera down.
    I have the pre-op on WEdnesday but tbh I don’t have a clue what they’ll be doing and why other options haven’t been considered.

    Any comments would be most appreciated please :)

  46. Deepinder says:

    Hi
    I am suffering with the problem.kindly suggest what safety mesures to be taken care. Infection is from last 3 to 4 months due to which i am very much tensed.

  47. Hi Guys,

    I wanted to post a reply to this article … to say to everyone…

    If you have a sinus (or THINK you have one) … get it sorted ASAP!
    YOUR LIFE COULD DEPEND ON IT … and I’m being serious!

    I’ve had 8 sinuses in total… and here is the story about the 1st one:
    ——————————————–

    My first sinus appeared way back in around 2003 time …. It grew within 24 hours! I was in agony!
    I went to the doctor (GP) who said “It’s just a cyst…. hot bath… ignore it”

    A further 6 hours later… I was rushed to the emergency room as I suddenly had searing pain and was going into shock thanks to the onset of septicemia. The sinus was starting to break!!! Within 36 hours of it first showing!!!

    The sinus was NOT growing outwards in anyway… but wrapped it’s self around the base of my spine.
    Very quickly it grew to approximately the size of (maybe a bit bigger) a golf ball. I was rushed in … and while I was waiting for surgery ( I was under the knife within 1hour 30 minutes from getting to the hospital )

    The surgeon and nurses who cared for me said to me “if you had been another 1 hour you wouldn’t be here!”

    I was kept in for 3 days after my first surgery due to flat-lining on the operating table … I was obviously brought back… but I had a reaction to the sinus and poisoning… because I had waited too long!!

    If you are in ANY DOUBT … scrap going to the GP … go to your emergency room at the hospital!

    The time you save could save your life!

  48. Ornella labonte says:

    Im a sufferer of this do u recommend the surgery ?

    • Amit says:

      Hi͵ please dont go for any surgery. if you want permanent relief from this ugly situation then please choose ksharsutra treatment. I was also suffering from the same but did ksharsutra in 1st week of march and now in just 4 weeks i am 100% cured.surgery will just give you big wound ͵ pain and lot of trouble and also chance of recurrance. There is dr. prasad bapat‘s comment is there reply him or me.
      Best of luck!

      • Nidhi says:

        Hi
        Can you pls elaborate on ksharsutra treatment.

        I am also having the sinus.

        • Amit says:

          Hi͵
          Ksharsutra is best treatment for pilonidal sinus and fistula. here they insert medicated thread in the track of sinus and this thread is changed after every 7 days. within 4 to 6 weeks this ugly disease get cured permanently. Again I am repeating dont go for any surgery. I did ksharsutra in pune. you should find expert ksharsutra doctor in your city and get treatment. If you are in pune then contact Dr. Prasad Bapat.
          omayurvedicclinic.com
          Best of luck!

  49. Charlotte says:

    Hi I’m 21 and started getting this over a year ago, my first operation I had it drained and then got it back every month or so and have had it 11 times , last week I was told I was having flap surgery done but they actually scooped it out, I then fell down the stairs and opened the top stitch and they said not to stitch it back as the leaking fluid can cause infection . Although today it has started hurting and looks like its infected. Has anyone else ever had infection after this op and if yes will they open it up and pack it? As the surgeon said there was only 50 percent chance of the stitches working anyway , feel for all of you that have this the most painful thing ever and seems to be some of you have had more than one op on it! I’m hoping this heels and is the last of it :(

  50. Chris says:

    I have had pilonidus issues for 18 years now
    And have had 9 operations, I am about to have my 10th but this time a
    Karydakis operation, would be good
    To hear from anyone who has
    Had this procedure and their experience with it
    Thanks

  51. Katrina says:

    Hello, my names Katrina, I’m 23 and I’ve had five surgerys for a piliodal cyst…my last surgery about two yrs ago I have a flap im pretty sure…had a wound vac for about a year…very painful. Doctors were a pain..did a lot of homathic meds….been ok since…was out of work 3 years

  52. t anwar says:

    Hi pal my cyst has burst today and there’s some discharge from it and it does smell but the question I have is how long will this discharge last as I am out tomorrow and this smell is bothering me man!!!!!

  53. Digger says:

    Hi, thanks to all posters here and to you Colin for setting this blog up. I had p s surgery lower down than what I believe is the usual location. I had surgery in Jan 2012 and the 3 and half cm wide and 3cm deep wound eventually healed in Oct 2012 to then burst open in Nov 2012 a few weeks later in Dec2012 and again Jan 2013. My bleeding is reducing when this happens and the periods where it bursts is going from two weeks to five weeks now. However, my now retired surgeon was eager for more surgery and my new consultant is eager to avoid this. My GP nurse is wanting to go down a tissue viability nurse route. I have no new sinus or cyst bursting merely the wound. This happens when o go to have a bowel movement and these happen every 2-3 days at moment. I tend to drink loads of water to flush myself out and then bathe in salt warm water afterwards to then apply sudacream in the wound area. This has been working but I am
    Nervous to use loo away from home and return to my usual routine. I get down when this happens and worry about my long term quality of life if this never heals. I am also gay have split from my partner and fear I may never be able to have another long term relationship if this does not fix up. It has been hard getting advice and support here in the UK but hoping to hear some positive feedback and that there is hope out there.

    • Xander Taylor says:

      Digger,
      Chances are you wont be alerted to this reply… but I wanted to post and let you know … things will get better!

      I had to have 8 PS surgeries in the space of 6 years! Each time getting worse and worse! The largest one was 3cm by 6cm… which almost killed me as it was ready to burst inside and poison me :(

      Usually healing took a few weeks… however for 2 of them it was at LEAST 10 months to heal

      My surgeon ended up doing a Bascoms Cleft Lift and so far in 4 years I’ve not had a recurrence at all!

      The reason I’m replying to you specificly is because as a fellow gay man, my fears were about my sexual relations!
      Following my cleft lift, I tried to have a normal sex life however because I kept “busting” I have ended up waiting around 2 years!

      My advice would be… hold on!! Ride it out and I can assure you it will get easier and better! :) xx

      Xander – Hampshire

  54. vivek says:

    Hi ., i have this problem of pilonidal sinus too.. how much time does it take to full recover after surgery. thnx.

  55. Tate says:

    Hi, my name is tate, i am 18 and i believe i have a pilonidal cyst, it started i believe when i was mid 15 or 16, it started as more of an itch and one day i just scratched and felt liquid so i looked at my hand and saw blood i let all the bloody ish puss come out and all i was pretty confused and freaked but my parents werent sure what to do i guess and pretty well have dismissed the issue since, but i now have three sinus’s one being larger than the others but not big enough to be a big problem or nothing, but i would have flare ups not very frequent and not really painful only would bother me if i sat directly on it and all but very manageable pain, i have never gotten it checked by a doctor or anything i know its stupid to not have but i just dont know what to do i have read too much online and scared myself about surgery because i read ppl have to keep getting it done again or it just makes everything worse , i just need some advice on what to do….honestly i can deal with its current state but are there risks? Please give me advice and tips and anything you can i live a rather active life and i dont want to lose that

    • I am treating anal fistula & pinonidal sinus since 14 years in PUNE ( India).Here we insert a medicated thread ( called as Ksharsutra) in the sinus under local anaesthesia. This thread is changed after every 7 days. In 4 to 6 weeks patient is free from disease. No need of admition, dressing, antibiotics. No recurrence. Patient can continue his work as there is no big wound

    • veky says:

      Hey Tate my case is to similar with you..i too suffering it from over 2 years I just once went to doc. who made a incision and pull out puss. But later I got it again after 3 months. But from then I’m too scared of going back to surgeries. And it’s not really painful and it occurs monthly once when I over sit on work for long hours. The pain will be for 2-3 days till the puss is out. Then it heals immediately and I’m totally fine. but little scared again when it comes .. i too want to know what are the risks if you find out please let me know..

      • Charlotte says:

        Hiya I have this where the puss comes out and then heals the next day but this is why you are getting it packed because the infection gets closed inside so all it does it build up again you need To either get it packed as this heals it from inside out or they need to do an operation , hope it helps :)

  56. Hi, im on my fourth op, im 32 & first surgery was 14 years ago. I had a bascoms in 1999, and i now have a wide exciscion wound .. 6×3 & 4cm deep , ” almost to the bone” according to my surgeon! … I enjoy reading others experiences as to me ignorance is not bliss &when uv endured this, the only people who cAn appreciate the trauma to ones life this can cause! I suffer chronic back & hip pain so a big worry was pain relief having already been on max dose tramadol already

  57. naresh says:

    anyone who is suffering from this infection can contact me on nareshdhanjal23@gmail.com or read my blog world free of pilonidal sinus because i was also a victim of this infection & got my self treated & m fit & fine now, i have attached my pics on my blog so you can see them.

  58. hayz says:

    Hi I think I’ve been diagnosed wiv this have 2 absesess near my coccyx bone, went to the walk in centre and they gave me antibiotics, the pain is so bad had my own doctor come and visit me at home 2day as I cnt stand 2 move, cnt sit or lay without pain cnt walk or do anything my own gp has put me on 2 new antibiotics and strong pain relief but tonight they have both popped and am losing the puss and blood, my gp neva mentioned surgury 2 me so now they’ve popped wot do I do just wait 4 them 2 heal? X

    • Colin says:

      Yes, except they probably won’t properly heal, that is, whatever caused the abscesses in the first place will still be a problem. If the abscess is now draining it should start to feel less painful. First you need to go back to your GP and get him/her to confirm if they think it is a pilonidal sinus, then you need to discuss whether having surgery is a good option. Most of the time it is.

      • I am treating anal fistula & pinonidal sinus since 14 years in PUNE ( India).Here we insert a medicated thread in the sinus under local anaesthesia. This thread is changed after every 7 days. In 4 to 6 weeks patient is free from disease. No need of admition, dressing, antibiotics. No recurrence. Patient can continue his work as there is no big wound.

        • Lee Kilburn says:

          hi my names lee iv got a lump in my bum next to my bum hole and its made a wee hole and there is stuff oozing out.just 2 weeks ago there was blood cuming out, i went to the doctoers and they gave me antibioticsz. not just that when this burst about 5 months ago i was getting symptoms the symptoms are dizzyness,feeling like i going to faint i shake to the bone i get really tyred i cant be around to many ppl or i will go all nervous. its got a grip of my life i cant think proper the pulpitations are off the rails the doctor has gave me propanalol and im on trazidon with antibiototics there trying to say iv got anxiety and take panic attacks but i was fine before this thing burst i would like proper information coz im really sick of of people saying iv got anxiety thanks

        • sree says:

          wat is d fees for d treatment. can i get the procedure done in a day n return back.

  59. Natasha says:

    Hi i know this is a long shot but ive just had my second lot of surgery and have got stitches i was just wondering how long its supposed to hurt for its been 4 days and im still in agony :)

    • Colin says:

      It’s not unusual for it to be pretty painful for about a week after surgery, if it’s still hurting a lot after 2 weeks you should be worried. Look out for any swelling or excessive bleeding. If you really think something’s not right see your GP or call the surgeon take some strong pain killers, normally you’d be sent home with some co-codamol or something similar anyway. I hope it works out well

  60. sam says:

    i just found out i have a cyst on my tailbone. i’ve never been in this much pain in my life. I cannot sit down, its very hard to lay down comfortably and walking is not very comfortable either. Theres a bump on each site of my crack is that normal? and is it suppose to be very red. i noticed something was wrong with my tailbone more than a week ago, and it still hasnt popped, what should i do?

  61. jake atkin says:

    Hi my name is jake I am 23. I had surgery 2 months ago to remove a pilonidal abssess then 2-3 weeks of packing!!:-( all went well but it returned about 2 weeks ago directly under the scar ( looked like an old football inner tube about to burst) which eventually burst just b4 going in2 surgery for another pilonidal abssess removal! Again all went well although pressure return 3 days after surgery n then large amount of discharge ( I’m guessing abssess returned but poped n drained out of existing hole – I’m told this is why they leave n open wound to b packed so any badness can drain out). Wound looks healthy n clean so I’m hoping it won’t return? In fact I’m praying it won’t coz I’m travelling to Asia for a year in 3 months!!
    I was hoping u could tell me if having surgery in Thailand would be safe? I have a family house in ko lak ( south of Phuket) so that helps I suppose! I’m really really worried my time will b cut short or spent worrying some Thai doctor is cutting stuff away that’s not needed!
    Also is a pilonidal sinus removal needed to totally be sure if no reaccurance coz that operation looks a lot larger than what I’ve previously had!
    Any reply would be much appreciated
    Thankyou

  62. Bev says:

    Struggling after 2 surgeries, can’t seem to get the lower part of my crackline to stay healed. About 1 inch keeps rubbing open. Any advice would be deeply appreciated. Been 3 years since surgery and I don’t sit. Desperate for jelp

  63. Tash says:

    I had my first pilonidal cyst when I was 18 and had surgery for it after a few months of having it because I didn’t know what it was and it was embarrassing. My recovery took 2 months and I had stitches and it was very painful.
    Two years later I’m now 20 and it has reaccured, I now knew straight away what it was, after 3 days it was huge and burst so I went into emergency and had surgery that next day just that they left the wound open, I have now been out of surgery for 3 weeks with a nurse coming everyday and the surgeon said there is still hair and ‘muck’ I’m there so I have to go back into hospital next week and get it cleaned out then be off work for 2 weeks.

    I’m wondering If anyone else has been sent back after 3 weeks to have it cleaned out and If it’s the same pain after or what happens? I’m going into work tomorrow and Friday, is that a bad idea too?
    Just curious and would love a reply. Thanks

  64. Need advice says:

    Colin,

    Thank you for this site. I have done a lot of reasearch trying to determine what is going with my body and I feel like I am making profess.

    I have an eraser size hole above my anus. I’m almost 31 and have been experiencing these issues for almost two years now. I don’t have any pain or bleeding but suspected I’ve been having some sort of drainage. I have had this “wet” feeling in my cheeks as if I hadn’t wiped properly. Sometimes there has been nothing, other times a clear liquid shows on the toilet paper. I’ve been mostly concerned about the discharge and the smell that can accompany it. Sometimes fishy, sometimes smelling like feces. At first I was concerned that it was diet related, or a relaxed/depressed muscle. I Sometimes I haven’t had enough fruits in my diet, and my fiber intake might have been a possible issue also. I was let go from my job and drinking heavily, and I thought this may have been an issue too. Neither seemed to impact this with changes for any length of time that i’ve noticed. I eventually went to the emergency room and was examined by a doctor and an assistant. Both were dismissive and in disagreement about whether I had a sinus or not. The doctor’s advice was to live with it. I was given a script for antibiotics and sent on my way. I thought the problem was gone but it has recently flared up again.

    My diet is good, I eat lots of veggies, don’t consume a lot of processed foods and try to eat a good amount of fruit. Now that I’m a student and unemployed both food and medical insurance are issues. I’m 5’10 and weigh under 190 lbs and was recently around the 215 area when these issues have come up. I do drink a bit, and smoke cigarettes sometimes (I used to smoke a pack a day 10 years ago).

    I recently shaved myself (I’m hairy everywhere and trim shave everywhere else) after reading that could help. Recently I’ve wiped and many small hairs along with the discharge have been on the toilet paper. Apologies for the length of this post. Here are my issues/questions:

    My concern is smell while being in public when the discharge happens and sex related. I seem to sweat a lot the groin/rear area when engaging in sexual activity or when in wake up having fallen asleep in my clothes. I don’t notice a smell (unless I’m smelling the tp after a wipe), but would like to engage in sexuality activity as I’ve become more physically fit. Any suggestions?
    I’m overly concerned about the smell and think that people in social situations talk
    about it. I realize this could be social anxiety. Has anyone had similar issues?

    Treatment: I know we aren’t doctors. I don’t have pain, only the sweat/water like discharge. What should I be discussing with doctors once I get insurance? Should I talk to a GP, proctologist, or some kind of specialist?

    Lastly, I have bowel movement issues- sometimes not going for days. I know there are a lot of reasons this can happen but I’ve read that others have had similar problems. Does this point toward anything relating to this? The smells have been quite foul. Wiping requires excessive tp. I usually shove tp in my anal cavity to get all feces out. If the discharge and smells associated went away I wouldn’t care about this at all as I have no pain. Should I be trying to clean the extra hole at all?

    Thank you for this site, and for all of your stories. My emotional state has been fragile because of these issues and it is comforting knowing that people are going through similar things.

    • C says:

      your cyst is abscessed (open and draining) and will not heal until you get surgery. I had this experience myself and waiting 6 months and it never healed. you will need surgery so save yourself the money of unneeded visits and go straight to a GENERAL surgeon and not a physician or a dermatologist. a dermatologist can do the surgery unless it is deep then they are legally not allowed to continue. a general surgeon can do it all the way through. ( call ahead and make sure they do pilonidal cyst surgeries before going in. some just refuse to do it,)
      In terms of waiting for insurance i really would wait to have it, i lasted 6 months and its annoying but not life threatening. my surgery bills added up to a little over 5,000 dollars which I had to pay about 1,000 of. that will depend on your insurance though and is just an example

    • patrick says:

      Im 31 and had very similar issues. I never had a lot of pain either until this past summer. I play golf regularly and it became quite painful and i also notice a different smell i was not accustomed to. I went to my primary doctor and he immediately diagnosed it as a pilonidal cyst. It was slightly infected and he gave me antibiotics which helped… (temporarily) Within 2 months i was back. I knew i did not want to go through another painful summer like that and surgery was my next option which i jumped at. The longer u wait the more it grows, did you hear that its important! I had my surgery on 11-16-2012 3 weeks ago. I was super nervous, hell its surgery who isnt. My blood pressure was 147/87 at the surgeons office, usually 112/70. The pain is tolerable if u stay ahead of it with pain medication. Doc told me i had 50/50 chance that my outer nylon stitches would hold. Thankful they have and my wound did not require packing. ( gauze stuffed in the wound to keep it from bleeding and other not fun stuff) So 2 and a half weeks from surgery i had my stitches removed and all seems to be healing well. I do still have slight pain and the wound itself is a bit raised so ive got some scar tissue. Im returning to work monday 12-10-2012, and im a mail carrier so fingers crossed all goes well. In short go to your doctor its their job to help you, dont punish yourself with worrying. All your other symptoms are prob cause you are freaking yourself out trust me i know! One thing i learned from this is how many other people have been thru it, youll be ok. Hope this helps and good luck!

  65. Sammy says:

    Hello, I have had what feel like a bruised coccyx on and off for a year, but last Wednesday it has formed into a lump. I cannot sit, walk properly or even lay sometimes because of the pain. I went to the doctors and got given anti biotics. The next day it went to a&e as the pain was unbearable. They said they couldn’t do anything as the lump was not formed enough as it didn’t have a head on it. They then have me cocodamol to relieve some of the pain, which works for. Few hours then the pain returns. I don’t know what to do about this as I’m desperate for it to go as I can’t go to work. Has anyone else had a cyst like this? Or have any advice for me?? The lump is like the size of a bouncy ball and the surrounding area has all swollen and feels hard.

    • anthony says:

      Hi I am anthony from india,27 yrs of age,last friday I noticed a small round wound in my butt area between my buttocks above the spine,I assumed that’s its just a small wound so I just applied soframycin antiseptic cream to it,by monday I noticed it had become much bigger and puss,blood was draining from it.I never had any symptoms of this in my entire life.I met 3 big doctors in my area and they diagnosed it as pilonidal sinus and the only option is surgery.I became so sad after reading all your reviews and it was troubling me day aand night.Finally I thank myself that I came to know about a natural remedy wch is available only in india which cures this desease pemanently without any reoccurence and its called KSHAR SUTRA,its an ayurvedic surgery by a thread applied by powerfull herbs which haas potential to kill any kind of infections in the sinus withoud any big wound or bloood loss,I got this done day before yesterday and can feel its working pretty well,trust me brothers,sisters and friends do read about it and m sure u can find specialists for Kshar Sutra in ur town as well,I’ll keep u guys posted about my recovery,I’ll be very happy if it cures all of us,lord bless u all and kill this deadly funny desease.

    • Becky says:

      Hi,
      I have had exactly the same experience as you with the symptoms and the doctors/NHS. I had been turned away by my own doctors, 2 walk in centers and even the accident and emergency department before getting seen properly.
      When i eventually had been seen by a consultant, she knew exactly what it was (Pilonidal Sinus/Cyst) and told me that i would need surgery to remove it. I got admitted into hospital that night and had surgery the following day. I went under general anesthetic so i cant remember a thing.They left the wound open, saying it will be less chance of the infection coming back than having it stitched up.
      I’m left with a hole 4.5cm long by 3cm deep until it heals. I see a nurse daily to have it packed and dressed. Coming up to 4 weeks since the operation and the hole is now 3.5cm long and 2cm deep. After being off work for a month due to this, i’m hoping that i can return in a few days even though i still need to packing and dressed everyday. The only time i get a lot of pain is when i see the nurse to have my packing and dressing changed.
      I hope this helped you with the symptoms that you have been experiencing,

  66. Jerod says:

    Hello,

    I am 20 yr old male recently diagnosed by university doctor with pilonidal cyst. I have no large cyst present, just very small nodules, totalling 2-3. I have 2 small sinus and I have been shaving the area, using tweezers to pull out any stray hair, and using hydrogen peroxide to prevent infection. That general area becomes numb but no pain, except for sore lower back. It is very difficult to make an appt with general surgeon where I live… it takes a long time but I am trying to set up a consultation now so if I have to have a procedure it can be done over my 1 month winter break. I know i have sinus, i know i have small cyst so I am going to advocate for surgical intervention before this becomes a major issue down the road. I have done a lot of reading about best surgical methods such as cleft lift. Is this option too extreme for my present state? After my university doctor looked at it and diagnosed.. i cant even get an appt with my general doctor back home. NO GENERAL DOCTOR WITHIN MILES OF ROANOKE VIRGINIA WILL EVEN LOOK AT IT. So I am forced to wait and wait until I can get an appointment. Any advice for what I should speak to my general surgeon about/ do in the meantime??

    • C says:

      It would be important to inform him if it becomes abbcessed. other than that, no harm in waiting. the reason you have 2-3 nodules instead of 1 big one is because the source or irritation is in a dense tissue area and there is less pressure away from that sight. basically the fluid is traveling to different areas of less resistance. the surgery will be draining the nodules, then carving and cleaning out the source.

  67. Paul Byers says:

    Hi,

    My name is Paul and I have been completely blown away by the responses and amount of people who, like me, have suffered through this.

    I had my first pilonidal sinus operation at 19 in 1997 and was told it was completely normal and the surgery went well. What a joke that was. The surgeon made a fair mess and it subsequently took 2 years to heal. In that time I lost my job, my house and nearly lost my car. My uncle had a similar operation done a week after mine, by a different surgeon, and was back at work 2 weeks later, so 2 years of healing and daily dressings was certainly driving me mad, and the surgeon kept telling me it was ok.

    After doing some research, after all I had plenty of free time, I found out the way the surgeon had excised the sinus was why it was taking so long and not healing correctly, major screw up on his part!

    I was also told that with the amount of tissue that had been removed that it would be highly unlikely to return, the surgeon should really have been a comedian, it returned in 2006.

    I had the second surgery done by a different surgeon who was completely dumbfounded at the mess made by the original surgeon, and commented to me that the first surgeon should never be operation on anyone, which made me laugh because he was promoted to Director of Surgery for one of Australia’s largest hospitals.

    The second surgery was a flap repair and also removed the scar tissue from the first surgery and suprise suprise it healed perfectly and I was back at work 2 and a half weeks later.

    Whilst the scaring is a little offputting for some my quality of life is 100% better than before. Keep up the great work with the blog and hope all goes well for the future

    Cheers

    Paul

  68. jeff says:

    I am 28 yrs old and I got this about 3 yrs ago. It started as a painful and sensitive bump above my anus and below my tailbone. It popped after 4 months and sinus formed. I have been living with not being able to comfortably sit for 3 yrs. It flairs up bad about every 2 to 3 months, to the point i want to break down and cut the damn thing out. It has gotten better since I have been shaving around it and keeping a piece of gauze over it. Change it out about 3 times a day. It has now herniated and I have skin or insides coming out of the middle. I have heard horror stories about how long the healing process is and if it actually works or will just come back. I got close to the breaking point and it got better with antibiotics. My doctor will now not prescribe them anymore and says I have to get the surgery. What do I do?

    • Colin says:

      I think most people who’ve had the surgery would say go for it Jeff, it’s the best chance you’ve got to get rid of it, yes there’s a chance it will come back but it’s better than doing nothing. It’s very unlikely going to get better by itself. For every story of healing going bad and recurrence there’s a story of someone who healed, people mainly only write things on the internet when something bad goes wrong. You don’t go telling everyone in the world when you had some surgery on an embarrassing part of your body and everything goes really well and you heal up fine do you? It’s a good thought to remember. Good luck with it.

      • Jeff says:

        Colin thanks a lot. I am in the process of switching insurance companies, so the surgery is on hold. With keeping it dry and hair free, I haven’t had a flare up and very little drainage. It almost looks fully closed which scares me even more. If my sinus closes will I have another flare up and it will have no where to drain and I will go through the same pain as the beginning? I have done a bunch of research and it seems keeping it open after surgery rather then the flap surgery has a better record. What are your opinions from people who have had them?

  69. Adem says:

    Hi, my name is Adem im 19 years old and I been dealing with this Pilonidal cyst since December last year. It first started hurting a lot and it was a bump on my tail bone area. I went to the ER and they drained it and packaged it. I got daily dressing changes for a few days. I had no problems with it until June 20. The same stiffness pain came back and I went to the ER again. They drained it again and told me I had to get surgery for it to be gone. On August 24th, I got surgery for it. I didnt feel pain after the surgery but about 2 weeks ago (approx: September 25) it started to bleed a little and I noticed my scar had risen a little to be a little bump. I also noticed that I had a pour lower towards the naval and that was where the blood was coming from.I went to the doctors again and they said my skin from the wound was infected so they drained the skin that was puffed up and they said that I should be fine. Ive been having dressing changes for about 10 days now and its still oozing the puss/blood. The pour stopped bleeding but today I noticed on my underwear that it started bleeding again ( I think from the pour). I think I should get another surgery or something. I don’t know what to do! This has been the worse thing I’ve had to deal with and its so frustrating that it won’t go away! I feel as if ill never heal from this!.. Any advice or thoughts? By the way, I have a doctors appt. next week. Any specific questions I should ask him??

  70. kristen says:

    i had one flare in 01 went to emergency doc didnt even lance sent me home i had my friends pop it then i used rubbing alcohol to clean it two years later i finally found a surgeon who would touch he said the infection had dug tunnels and he had to scoop me out like an ice cream scoop. it took years to heal then finally it didnt bother me besides the huge scar and inability to do sit ups. so just a week ago it mustve came back now it hurts again . they dont give poor adults in ks where i just moved so idk what do. the pa at the cut rate clinic here had no clue i practically had to argue with her for some antibiotics. wish i could sue that first doc that sent me away it would help pay for any bills that i may acquire. i wonder if its too late? anywho hope god heals us all.

  71. joniarroba says:

    Sorry folks, I don’t understand how some people recover out of it after 3 months…Soon I will complete 2 years of this disease and I gave up doctors and stuff simply too expensive and no money left! sorry for you guys under the same situation, it is a real drama!

  72. Greg says:

    I have completely lost hope for having my pilonidal disease cured. Two operations, which were unsuccessful, and ultimately made my condition much worse. I have cysts on my groin, buttocks area..they flare up bad at least once a month. My tailbone is now just an open wound, which became infected about a year after my last surgery. I am 25 yrs old, and this all began at 16. I live in new york, and i am on medicaid. The problem is NO SURGEONS will accept medicaid. Surgery paid out of pocket is around 20 thousand, and NO ONE WILL DO A PAYMENT PLAN??? You have to pay up front, crazy.. i am lost i dont know what to do. All i know is to keep the areas clean to avoid infection..is there any way to take care of this disease without surgery?

  73. narsa says:

    hello sir ,i m suffering from this pilonidal sinus.. From starting i m giving my whole problem .. In starting i suffered from big pain n i found that m suffering from this disease. My doctor advised me to go for surgery.. But i said no because he said that after surgery u are not supossed to go for gym, horse riding etc.. Than he gave me some tablets after that sinus was gone but when i do any hardwork i will be suffred from pain i am so diprresd by this problem plz give me natural remedies

  74. Lauren says:

    Hi Colin,

    I am a 22 year old female also from Surrey and I would really appreciate your opinion. I had a pilonidal cyst in February of this year, I had it drained in A&E, was given antibiotics and had it packed for about three weeks after. I went back to the hospital for an outpatients assessment where the doctor told me that the best way to get rid of the pilonidal ‘disease’ was to have more surgery. This surgery consists of cutting a channel from one sinus pit hole to the other and then joining that with another channel to the scar where I had the cyst drained from in February. The wound would be left open and packed again to heal from the inside to the outside, the recovery time is the same as the cyst removal time I had earlier in the year. The surgery would remove any pits causing me to get another cyst. When I went to see the surgeon about the operation he said that my cyst had not been a big one and that it was a 50/50 chance of it recurring, but if it did come back the second cyst is normally more aggressive. I have had second opinions from other doctors and nurses, some say I should ‘let sleeping dogs lie’ and leave it alone now it has healed, others say the surgery means it wouldn’t come back and would save me worrying.

    I have absolutely no idea what to do! I am due to have the surgery in 2 weeks but I am not sure I am making the right decision. I have only really just got back to normal from my operation earlier in the year and really don’t want to undo all the hard work of getting better. To add to problems I am absolutely terrified of having the surgery as I am not the best with needles and have never been under general anesthetic before so am slightly worried about that too.

    I suppose its a question of either not having the surgery and have the chance of another cyst occurring/not occurring or having the surgery so that I don’t ever have to worry about a cyst again but being terrified of the surgery and having to go through another long recovery period.

    As a person who has been through this I would really value your opinion, as quickly as you could give it to me.

    Thanks you so much.

    • Colin says:

      Hi Lauren,

      I sympathise It’s a difficult decision. I can’t really offer any first hand experience of the same predicament because I never had my sinus drained and healed, the first time I had surgery it was to excise it.

      If I were in your position I would be going for the surgery, purely because knowing what I know I would want to minimise the risk of it coming back. You need to think about the scar and whether you’re worried about that from a body image point of view, although it sounds as if your pilonidal isn’t that bad so hopefully it would be quite small. You also need to consider that if it does come back you’ll likely need to have the surgery anyway and it will be worse, have a longer healing time, and you’ll have a buffer scar. You’re young and if you’re fit and healthy otherwise you shouldn’t have any problems with the healing process.

      I wouldn’t want to be the person who recommends one way or another, after all I’m just someone who’s had an experience with pilonidal disease just like thousands of other people but chose to write about it on the Internet, If you’ve talked to a lot of people and had opinions from a number of doctors and surgeons you probably in a good position knowledge wise. You need to be comfortable in your decision, because if you make it based on someone else’s opinion and it doesn’t go the way you’d like that’s hard. I can only say what I would do and since the surgery isn’t as bad as I thought it might be I would be inclined to go for it.

      Whatever you decide I hope it goes well and good luck.

  75. ryan says:

    I had a lump on my back for about 4 years and left it, so got it checked out and they told me it was just a lump , so the next day I knocked it and it had balooned to the size of an orange, so went back and they told me to got to hospital , so had it drained , was in hospital for 4 days because they cut into a vein so I lost a lot of blood. A week later I had a blood test and got told I had caught MRSA, so the wound got incredibly infected. Couldn’t walk properly cos it had grown into my sciatic nerve . After a month and a half I woke up to find my bed covered in blood so went back to hospital and they cut it open again . And had to go through all the pain again and back to the doctors every day to have it packed and then had blood tests again to find out that the MRSA was still there and that I had caught 2 other disease type things. The first half of this year has been hell for me and is continuing . My sciatic nerve is still terribly bad. Didn’t think I could get this at 20 years of age .

  76. ashley says:

    Hi I had the pilondial cyst surgery july 16 and he was able to close it and I now have stitches. Just wondering how long til I can sit again and when it will stop oozing?

    • bazza1980 says:

      Hello. I had my operation on the 27th April and i am just able to sit down but i did have big problems in recovery time , My Sinus was very bad and i did have the vac machine for a long time as the hole was massive. For you to be able to sit down might take some time as this can hurt aswell . It’s best for you to lay down on your side for some time to let the stiches work. The oozing can take time to stop aswell . Like my operation and recovery time was hard because i had my operation in the 27th April and now it’s 27th July and i am still having dressing changes because i am still oozing . Good luck with recovery

  77. Becca says:

    Hi!

    I just went trough a drainage and I have a few questions. Have you ever had your pilonidal sinus drained? If so , could you please e-mail me? I’m a little worried.

    Thank you!

  78. arwyn says:

    Hi, i am a 28yo male from wales. i have been back and fourth to my dr for the past 8 years. had my first op in september 2006 which took a year and a half to heal but left a pea sized hole at the top of the inscision. Since then i have been prescribed antibiotics after atibiotics to no avail. i had my last surgery on july 17th (2 days ago). the nurse is coming change my dressings every day, and to make sure theres no infection.

  79. Barry Perryman says:

    HI I had my operation for Pilonidal Sinus on the 27th April 2012 and i was fitted with a Smith and Nephew Vac machine and i had lots of problems as my nurse come to my house every 3 days to change the dressings . The first visit was a very nasty time as my nurse had taken off the pump for the vac and dressings to find out i had a massive bleed and i ended being rushed in to A&E and i went in @ 12.40 pm and my bleeding didn’t stop at all and my operation to stop the bleeding was 11.45 pm that day . When i woke up in the recovery room i was told that the hole is now bigger and told me it was 5″ wide by 6″ deep . So my first operation was 27th April and they didn’t remove my vac machine til 25th June and now it’s 15th July and i am sill having dressing changes at my doctors and i was told i still have alot of time til the end . But i was told that this can still come back . I hope not

  80. Sean says:

    Hi Colin, just came across your blog and it’s by far the most helpful and practical info I’ve seen on the internet regarding this. I’ve had this condition for about 15 years and suffer every 3 or 4 weeks from it – yes every 3 or 4 weeks. I’m terrified of an operation, hence suffering for so long but I am considering it more now that I’m getting older. It seems sensible to me that my immune system must be taking a hammering with fighting it pretty much all the time and I’m concerned that unless I do something now that it’s going to cause complications or other issues.
    I sincerely thank you for your blog and your very honest accounts of your experiences and helpful information.

    I wish you the best of health, and continued success in beating this thing.

    Sean

    • Sean says:

      Hi again Colin, Sean here again. Well I finally decided to get the operation and it was last Friday… and so far so good – although obviously it’s still very early days. I’m being very very careful not to disrupt the stitches in any way at all and am sporting a wound of around 20cm for what looked like 2 small sinus outlets. I’m in very little pain for the size of wound – I was expecting much more pain than this! The surgeon did tell me that there’s a 50/50 success rate with this operation but I’m thinking positively about it. I’m getting a bit fed up with having to lie on my side all the time so far but it’s a small price to pay if there’s a chance that this will fix this and anything I can do to help the healing process is my number one priority.
      Wishing you continued success with beating this thing. I think it’s more common than official stats suggest and your site is still easily the number one source of support material for fellow sufferers.
      Best wishes,
      Sean

      • Colin says:

        Thanks Sean and that’s good to hear. That’s the thing that struck me the most as well about the surgery, the pain is a lot less that you expect. Good luck with your recovery

  81. Lise says:

    Hi, I am from Denmark and I had the karydaki operation done in September 2011 without success. It left me with a big hole between my buttocks which has still not healed. I am going for a Cleft-lift now, and I really hope it can bring this to an end! :-)

  82. narayan says:

    hi…I was operated for pilodinal sinus 5 years ago …..those days I was a student now I m about To work and I m not able to seat for long duration……I get some sort of pain if I seat for longer period what should i do……

  83. joniarroba says:

    Guys, anyone knows what happens if you don’t do the 3 surgery to take the necrosis out? I don’t have more options or money to do so…

  84. aaron.pritchard.1602@gmail.com says:

    Hi, my name is Aaron and I think I may have this pilonidal thing. I had had it for two to three years now. It doesn’t hurt at all it drains every other day or three days. What is your best advice to give me as I have looked through the web for the best procedure as to not get it back as you know it is very annoying. I work in an office so I sit for 8-9 hours a day. Could you let me know the healing process and time period also.

    Thanks and hope to hear from you soon

    Aaron.

    • Colin says:

      Hi Aaron, this whole site is about the things you’re asking. Healing times vary massively so it’s impossible to say, the best advice I can give you is don’t put it off. Go to your doctor and get referred to a surgeon, they can tell you much more than I can as they’ll actually be looking at it and have experience of lots of different cases, I can only offer advice based on my experience. If you get it sorted sooner rather than later you won’t regret it.

  85. Stephanie says:

    Hey my name is Stephanie and i have had 3 surgeries for this. One was a couple years ago when a huge cyst was formed right in the gluteal region, I suppose the hospital didn’t recognize it as pilonodial. So fast forward ahead to 2012 and the cyst removal site started to fill up with discharge and pop or bleed or whatnot every once in awhile. So I decided to get it checked out after awhile and they said I had pilonodial. About a month ago I had the first surgery which was 4 incisions, to drain the sac underneath the skin. Had to be packed everyday. Then about a week ago I went to have a follow up and they said one of the sinus tracks need to be removed because it was not healing and still infected. I had my surgery for that a few days ago and it didn’t hurt as much as the 4 incision one, just a bit tender. But yesterday ( 4 days after my surgery) it just decided to bleed insanely, completely out of nowhere. It scared me, but I jumped in the shower and it stopped the bleeding and after a few minutes of lying down I was fine. I’m not sure if it was because I was sitting a lot driving to a far away appointment but I was wondering if this has happened to anyone or as long as this doesn’t happen again, think I should be fine? And suggestions?

  86. Saroya says:

    Hi. I’M a 17 year old female who just had surgery for this disease yesterday. I am not in and have not been in any extreme pain. The incision is not deep at all & it was left open to heal. I can function & do everything I was able to do before. I did not have a sinus (I don’t think) that needed draining or to be lanced. My mom changed my gauze this morning as instructed by the surgeon. Lots of bloody draining. But when she changed it this evening we saw nothing but clear liquid on the gauze. We use wound wash saline 2 keep it clean between each change. My dad is amazed that I am not laying around in bed. I actually feel fine and even wanted to drive today. However I am leaving for college in August & I need to know if I should expect any intense pain although I don’t feel any now. Will I be completely healed by August? What else should I expect? My surgeon seemed pretty optimistic but I dnt wanna have false hope. Also I forgot to mention I don’t have stitches anywhere.

    • Colin says:

      I think with a bit of luck Saroya you’ll be ok by then, everything sounds like its going as it should, you shouldn’t have any pain, just look after the wound and live healthily, that will give you the best chance of healing quickly.

  87. Denise says:

    My 17 yrs old son had surgery in Sept. 2011 and Dec. 2011. The first surgery the Doctor stitched it up but it didn’t heal properly. He had to go back in Dec. and left it open. It is still not healed so the nurse at the Doctor’s office is packing it 3 times a week and still isn’t making any progress. Today we went back to see the Doctor and he used silver nitrate on the wound. I feel so sorry for my son. It just doesn’t seem like there is a end in site to all the suffering.
    Thanks for the great blog!!

  88. David Jenkins says:

    Hi, I had surgery for the removal of a pilonidal sinus 9 and a half weeks ago. I have had nothing but complications, starting with a GP nurse removing sutures 24 hours after the surgery, as well as infection after infection. I am still having a nurse come and change the dressing on a daily basis, and it is still extremely painful, over the last few days the wound has started bleeding severley again and the pain is becoming unbearable with painkillers having no massive effect. Is this normal, or should I be concerned?

    David

  89. joniarroba says:

    Guys, any of you has ever seen somebody who recovered from it? its been 8 months I had this surgery and I think I will never heal :(

    • jen says:

      My daughter suffered for 19 months she had 3 operations last one full excision and open healing it will get better

  90. khan says:

    I have a pionidal sinus, it is a small hole that leaked 2 years ago ( dec 2009) , however it was not too painfull and i was given antibiotics which had stopped all problem until this month (march 2012), again i have not had much pain but minor leaking. my doctor has again given me antibiotics. I was wondering if i should go back to the doctors and asl for a more permamant solution ( surgery)
    Thank you for this site colin, great help
    And id be greatful to any advice

    • Colin says:

      Really its impossible for me to say, I’m not you and in the end it’s got to be your decision. If you read around on the Internet there’s plenty out there that can help you to make that decision. My only advice would be not to take the scare stories you will hear to heart, surgery can be difficult and possibly the wrong solution for some people but ask yourself can you live with this problem, which is probably going to get worse for the rest of your life? How much does it bother you? And at the very least, I would definitely say it is worth speaking to your doctor and getting advice and opinion from them.

    • You can go for ksharsutra treatment which can cure your problem. For more information visit http://www.omayurvedicclinic.com

  91. Steve says:

    Hi,

    I’ve had surgery aronud 5 weeks ago, and I’ve been advised to keep it free of hair to stop any recurrence. Have you kept this area free of hair, either via waxing, creams or laser hair removal? If so how long do you need to wait for this treatment?

    I’m still having it dressed everyday – and I’m keen to find out when it does heal, what is the best way to avoid it coming back.

    thanks

    • Colin says:

      Hi Steve you shouldn’t start using any wax or depilatory cream until it has properly healed, however keeping hair from getting in the wound whilst it’s healing is very important, whoever’s dressing the wound should be able to make sure that’s not happening. My surgeon used a scapel periodically to shave the area around the wound whilst it was healing, this is impossible to do by yourself. There’s tons of stuff on the net about post healing, depilation, cleanliness and avoiding lots of pressure on your tailbone area are the best preventers but in the end it depends whether your surgery was thorough and your healing was good

  92. Bukky says:

    Hi. I read your blog. I’ve been waiting on nhs to approve my funding for about 2months now and I’m getting a bit frustrated. You did write that you went private. Can you please tell me if your surgery was funded by nhs. And how much did it cost you. My procedure is going to be carried out by a plastic surgeon so I really can’t go into A and E. thanks. Hope to hear from you

    • Colin says:

      No my private healthcare was funded by my health insurance. I can’t really give you an idea of cost I’m afraid the bills were picked up by the insurance provider.

  93. Georgina smith says:

    Hi I also live in Surbiton and am recovering from a pilonidal sinus which started dec 2010! Iv had 5 ops and it lanced once within 4 months my last op was April and it has only just closed! Is my scar supposed to feel lumpy? If you could email me I would really appreciate it as I have had a horrendous experience with this! The trick is trying to keep the same surgeon for every surgery on it! Thanks

  94. imran khan says:

    hi i am imran. i live in bangalore, india. i had a karydakis flap surgery done in mid 2002. it actually healed pretty well. didnt have a problem till june 2009. while doing some work where i needed to bend and hold a weight, the scar tissue which usually forms after the surgery gave way leading to an opening which took nearly one month to close. after that it has opened 3 times the recent being on jan 9 2012.
    it seems all these corrective surgery is a waste of time. the truth is that the scar tissues which form are very sensitive to stretching. one has to be really careful not to think that everything is normal and u can be as u where. for example i was into hardcore workout. but after this full squat and any lower back exercise with weights led to a light sensation not exactly pain but an ominous feeling like something wrong is about to happen. today i have given up my workouts.
    but what i can point is that it is very important not to jump for a corrective surgery the moment it happens for the first time. actually the first thing i should have done in retrospect is lost about 15 kgs. coz i weighed nearly 95 kgs. now i was not exactly fat but heavy, my cleft was slightly deep.but this should not have been a problem coz women have deeper clefts, yet they dont suffer. i am 6ft in ht this is another problem wherever i go i usually find seats too low for my height
    what turned out to be a problem is my other passion which is cars and bikes and driving/riding fast now india has rough roads everywhere i ended up hurting my cleft region unknowingly till i developed a painful bump. now this has become a problem for many in india with many cases of pilonidal sinus, add to it the fact that india is hot and indian people by genetics are hairy.
    there is also the issue related to car seats since we sit and drive a lot, again todays problem, it is very important to check for firmness of the cushion for example if the cushion is sagging you end up sitting in a knees-up position and driving loading up your tailbone even more than your buttock region, again something which happened to me
    i know a lot of reasons have already been listed all over the net yet people dont get it, this has become a result of our lifestyles, the fact that we dont walk enough, maintain low weight
    anyways my point is that jumping to a corrective surgery can be worse at times. for example in my case i almost get the feeling the doctors needed one more person to practise the karydakis flap. and see how it performs.
    they also didnt give good post op advice they should have stressed on me not gaining wt at all costs coz this is a serious problem today i weigh 115kgs due to metabolic syndrome, so today instead of going for one more surgery, i have decided to lose atleast 35kgs over a year which is possible, but let me remind you again i have to stick to good diet and swimming/ walking i cant do heavy weight workouts which i actually prefer. gaining weight actually puts your surgical area under a lot of strain, there is also the issue of removing hair around surgical area for the rest of your life which is downright irritating and require help of spouse/live in parners to do it for you.
    so it boils to one thing if u have developed bump for the fist time and your gp drains and cleans it, and say it heals very well, its very important to
    a. lose weight very very important coz the fatter u r the deeper
    ur cleft, infact try to be on the lower side of ur bmi scale
    eg. at 6ft i have a range from 74kgs to 84kgs i should stick to
    75kgs
    b. get fit walk/run/swim
    c. dont sit too long especially in a knees-up position
    d. dont drive for very long periods without a break and if possible have a car which has seat ht adjustment coz taller people need to sit higher
    e. even if u have a haircut see to it the hair dont get into u’r cleft
    f. check with ur gp and go for a depilation cream to remove
    unwanted hair personally i feel never shave coz when i first got
    a bump and my surgeon told me to remove unwanted hair by
    shaving this happened to be my undoing, i must have got
    ingrown hair which led to a pilonidal sinus.
    i know this is a very long post, my apologies, but i had to coz today i feel crippled even though i am not one, i cant sit , i cant drive, i cant take my family for a holiday, even my business takes a beating.
    so pls check with ur doc before doing anything.
    pls check with ur doc before using any of my advice as this is what i learnt after my experience

    • Colin says:

      Thanks for your detailed account Imran, you make some very good points and sorry to hear that your life has been so profoundly affected by pilonidal disease. I also really pleased to hear that dispute your experience with surgery you obviously haven’t lost faith in medical science. I echo your sentiment that the best thing someone who suspects they have a pilonidal sinus can do is see their doctor and learn as much as they can about surgery and it’s impacts and risks before making a decision as to what to do.

  95. John Garrod says:

    Hey, I was diagnosed with a pilonidal cyst about 2 months ago by my doctor. Jeez! So painful! I mean, I checked out Pilonidal Cyst Advice before I home treated it, and in the end I am glad I did. Avoided a lot of trouble with the hospital.

    All I can say is that I pray it never comes back!

  96. Fredrick says:

    Hey, I’m 26 and I noticed a Pilonidal Sinus or what I think is one recently and I’m terrified… starting a new job in less than a week have a big ski trip w/ new skis (ie. lots of non-refundable money spent) and I have no idea what to do. there’s no visible abscess and no weird fluids.. Wanted to get a closer insight on your opinion from personal experience.

    My name here is fake because I didn’t want anyone finding this out through google since it’s quite embarrassing (and I have a very unusual first name lol)

    • Florence says:

      Hello.

      First things first, if it is not bothering you at the moment then do start your new job and do go on your ski trip. If there is any sign of pain or leakage go to the doctors. They are only going to stick you on a waiting list to have it removed(trust me, I was on it for over a year) They would only refer you earlier if it looked like it was badly infected.

      I am a 22 year old female and I had my op on the 28th of July and still get it dressed every day.

      My only advice to you is that if YOU think something is wrong go to the docs.

  97. ann says:

    My 17 year old doughtier just had a pilinidol cyst remover last week. The wound was left open and it needs to be packed twice a day it has bleed heavily twice since the surgery and I’m a little concerned. I don’t know how much bleeding is considered normal and for how long. Doc tried to cauterize it with silver nitrate, it has bleed since then. I appreciate your glob. Thanks for posting it.

  98. Mahesh Rajput says:

    Thanks for a great Blog! i never thought, i will found this much information for this disease. I am facing this disease from last around 8months. I am in confusion, how to solve this problem, because it pains but not that much that i can’t handle, so i thought i will go for surgery after 3 months. so is it good decision or should i go for surgery as soon as possible. Please reply

  99. Florence says:

    Hi there.

    I am a 21 year old female who had this operationon the 27th of July and am still healing.

    The operation itself was fine and I thought I’d be back to work within the week. Sadly this was not the case. Whatever you do pleae do not accept cocodmol. It bungs you up and tears down below which is sadly what happened to me. My stiches broke and I have been going to the nurse every single day since. I had a nurse come in at the weekend to my home. I have recently been given a cushion which does take some of the relief off but I am constantly uncomfortable and feel incredibly let down.

    I have been to see the surgeon since the op and he said it looked fine which is fine for him but not for me. I have a giant hole in my lower back/buttocks.

    Thankfully I work for a good company who understands and am being paid but it is very hard to have a daily routine without going to work.

    My nurses have been amazing. They are so good. They ordered these wonderful heart shaped plasters (bottom shaped!) which keeps anything coming out. I also think the packing they use is great. It absorbs eveything. I suggest salt baths, big pack of baby wipes and paitence. Lots of paitence. I am about to scream with boredum. Sick of waiting for something to change. Going back to work will be a huge thing but I look forward to finally getting back into doing something.

    Wondering how everyone else is getting on with there healing?

    • richard says:

      Hi Florence,
      Your experience sounds a lot like mine. I had surgery early July and from everything I had been told beforehand I thought it would be a very small thing and I would be back at work very soon. Unfortunately, my stitches also partly opened and I’ve been doing the nearly daily visit to the nurses since. It improved quite well until early August, then got worse and since then has improved again. Now I’ve only got a shallow opening left although it seems very difficult for the last bit to heal. I know what you’re going through and how incredibly tiring the process is. I have been a bit depressed and miss doing all the sports that I love, especially during the nice summer months. How are you doing now? Do you do any exercise? I was told my one nurse that it was ok to do sports whereas another one told me I shouldn’t even go for walks longer than necessary. My wife has convinced me that I need to rest although I hate it. Hopefully it will have healed soon though..

      • Florence says:

        Hello.
        So since my post nothing has changed. My wound is still very deep and my usual daily trip to the nurse continues. I am now on a loop of the district nurses. What I mean by that is that I saw them all once and now I am seeing them all again! My nurse at the weekend could not believe she was out visiting me again. Sadly she did not think that much had changed either.

        I have not been able to do much exercise. I try and do some walking and I do some stretches in the house but apart from that if I do try and do something ambitious I normally feel the shooting pains begin.

        Going back to work is my next step. My doc wants to look at it again next week and I am going to ask about a possible phase return to work. I do a lot of sitting and standing up during my working day but this time off is boring me to tears. There is only so many photo albums I can make and box sets I can watch!

        Can I ask, how did you find your after care? Did you get a lot of information from the people at the hospital or your surgeon? Have you had a follow up from your surgeon?

        Best of luck to you.

      • richard says:

        Hi,

        I’m sorry to hear your wound is still deep and doesn’t seem to heal. Mine was like that for a long time but finally during the last week things have improved quite a lot. I’ve been on antibiotics since last week and they seem to have worked this time. I am not a big fan of antibiotics in general as they can act so negatively on your immune system and before this surgery I had never been on any. Now this is the 6th week I am on it since the beginning of July and I’m hoping I don’t need to go on them any time soon!

        My job is very flexible so I’ve been working most of the time since surgery – but one big mistake I made was to return too quickly in hindsight. I should have rested for two weeks after the surgery but nobody gave me the necessary information. I am hugely disappointed with the lack of information the hospital/surgeon provided to me. The nurses have been very kind to me during the after care but I would have liked to have someone more knowledgeable take a look once in a while and make sure that the wound is being treated the right way. I don’t want to sound like I am criticizing the nurses as they clearly have cared about me. The problem is that they haven’t seemed like they know how to treat this kind of wound and just have tried new things every week with no real long-term plan. What has made it so frustrating is that early on they said it might take another two weeks, then at that point it was another two weeks, and another, and another… and here we are three months later. I wish someone would have told me that this could be 12-15 weeks and I shouldn’t expect any less to avoid all the disappointments. My wife is actually the one who has suffered the most as she has been put under a lot of pressure during this time and has been very sad seeing me so much under the weather. She has also kindly been doing the dressing/packing during the days I haven’t been to the nurses and nervously looking for any improvements or set-backs.

        I was initially scheduled for my follow-up with the surgeon in mid October. Then, I got a letter saying they had moved it to late November. After arguing with them on the phone for 30 mins I finally convinced them to give me a follow-up in late September. I went there with about 20 questions. The surgeon came in, took a one second look, turned around, and said I need to be back again in five weeks. Great. I tried asking him questions but he was rushing out of the room.

        To conclude all of this I am very disappointed in the lack of information from the surgeon/people at the hospital. They are either overworked or get paid per patient/customer as they don’t seem to have any time for me. The people at the GP have, on the other hand, been incredibly kind but unfortunately aren’t experts on how to treat this wound.

        I hope you see some improvements soon!

  100. Alex says:

    Hi Colin,

    Congratulations on making a full recovery. I am a 27 yr old male who has had the pilonidal surgery at the beginning of February of this year (2011) and I am sad to say that I am still waiting (in trepidation) for the wound to heal. When I had the surgery I was infomed that the wound was deep in order to get all the muck out. I have been dressing the wound for 6 and half months now. The wound has healed albeit very solowly. I feel that this is the last stretch but this is a continual feeling for like 3 to 4 months now. I try and see the nurse every week for a good clean out and have only recently seen the specialist in my local hospital. He said that it should heal and that i should not pack the wound tightly as this doesn’t allow it heal and air to get to the wound. I have also been taking salt baths every day.

    I am at wits end sometimes as I have planned 6 months away travelling and am due to jet set off in November this year and certainally do not want this hangining over me, especially when I will be in countries like Vietnam, Cambodia and Thailand.

    My question to you, if you are still around to answer this, is how long does it really take in your experience to fully heal. I see that your last blog was in the region of about 5 months. I have no underlying problems like diabeties so there is no reason why this should take so long. Also, do you have any tips to a faster healing process. The Kalostat dressing you have reffered to is that the Alginate dressing? I have this but was informed its only good for fresh wounds.

    I would also like to add that people who have not yet experienced surgery, the pain is not as bad as many others make out, i hardly had any and that was even straight after. The only downside to the post op experience is the healing process. As I say to the nurses and doctors who do a great job on the NHS, in the time that I have been waiting for a full recovery, I could have broken my leg several times over and it would have healed several times over too!

  101. Chris says:

    Hi Colin,

    If you’re still checking comments… I’ve just had the surgery, 4 days ago in fact. At the moment I’m lying around at home sucking up sympathy, but also obviously reading up on what the next few weeks might hold in store, which is how I found your blog. I’ve had the wide excision surgery first up, and am now waiting for that to heal. I wasn’t really offered any option – that’s what the surgeon said he was going to do! Obviously I’m hopeful that sorts things out in the long run.

    Anyway: I just want to say thanks for writing about your experiences, the comments, particularly about your post-surgery healing, are encouraging and help me to understand what the next few weeks and months are all about.

    Cheers

    Chris

    • Colin says:

      Hi Chris,

      You’ve caught me on an uncharacteristically less busy evening than normal actually, although I don’t always have time to reply in a timely manner it’s always good to get comments and hear that people have found the site helpful. So you’ll be in bit of pain at the moment but that will ease quite a bit soon and although it can take some time to heal I think you’ll be glad your surgeon went for the safe option. I wish you a speedy recovery and sympathetic nurses! You’ll find there’s plenty of other people who have gone through it or are maybe even going through it now. At the time I was healing from my last surgery there were three patients at my surgery all going through healing from a pilonidal surgery so if you need advice you should be able to find it. Best of luck.

      Colin

  102. Lisa Whyman says:

    Dear Colin

    I am a 45 year old woman. I have undergone six pilonidal procedures now. The first two were in 1989 and 1990 when I was pregnant with my first child. Then nothing for over 20 years. In February 2008 the site became hard and sore again. I kept it at bay with 2000mg antibiotics and managed to do this for a year. However in March 2009 I underwent surgery. Followed by another in July 2009 and again in September 2009. The last surgery left me with a hole (pocket) and once again I kept it away by taking 2000mg antibiotics, until I again had to undergo another procedure in November 2010. I was advised by my consultant to have the Bascom’s Karyardis procedure, which is the procedure I signed for, as there was so much scar tissue from the previous operations, it just would not heal/close up. To be honest, I felt mentally and physically I couldn’t undergo yet another packing procedure. All of the above operations had to be packed and the last one I was still having packed at 14 weeks. Yet again I am left with a hole/pocket, as they did not do the surgery my consultant advised. I am currently complaining to the hospital about this, as I did not sign for this operation. However, no solicitors seem to want to take the case on.

    I am suffering mentally and physically as a result of this disease. I have lost my job and our home. I don’t suppose you have any advice for me?

    I am currently working part-time, but even this job is under threat due to my condition. In 2009 I had to claim Employment & Support Allowance and was seen by DWP doctor, who proclaimed me fit for work (my employer – doctor’s in Harley Street – sacked me due to the condition) and I was then signed off and left without a penny. I had to sell my home before it was repossessed. No-one wants to employ me. I need to work full time, but can’t.

    Any advice?

    Thank you.

    Lisa Whyman

  103. annette mcintyre says:

    Hi – your blog is great – my son has just come out of hospital today – had open, wide excision. In a lot of pain and pain med at our hospital hasn’t been handled well – neither has his dressing management. We haven’t looked at the excision yet – but his consultant advised it is deep and wide. I’m at my wits end as my son is only 15 and I guess we hoped that the surgery would end up being not too bad for him. Can you recommend any dressings that we can ask for as they keep putting on mesh gauze over the calvostat which they stick with tape and that is really painful. Also someone has mentioned special cushions that help wiith sitting. Any adviice you can offer would be great. I hope are you are recovered and well.

    • Colin says:

      Hi Annette, thanks for your comment. I am healed up now and have been for a while but to be honest my wound is still quite uncomfortable and sore sometimes, I guess simply because of the amount of surgery that I’ve had and the amount of scar tissue I’ve got now. Having said that it’s better than living with a Pilonidal sinus, and it gets a little bit better all the time.

      The first couple of days after the op are the worst and it will be painful but I think your son will be surprised that after a week or so it’s going to get a lot better. I took pain medication regularly for the first few days just to say on top of it and the best thing for him to do is rest, lie on his side and eat and drink well. I know it probably seems like a nightmare at the moment but the fact that he has had a deep and wide excision is better in the long run because there’s less chance of it recurring and in terms of healing up he’s got youth on his side! He should heal fine and quite quickly.

      The Kaltosat dressings are amazing, Over the top of that I think I mostly had a soft lint type dressing which was fastened on with a large square waterproof plaster essentially. It was so long ago now that I forget what brand it was. The nurses at your GP’s surgery ought to be able to find a better dressing, they really good at that sort of thing usually because they do so many dressings and they’ll be seeing him probably every day for quite some time. The thing is to pack the hole well so that the dressing doesn’t move around and abrade but not so tight that it puts pressure on the wound.

      I used to get quite a lot of dressings from GP Supplies

      Argos sell a coccyx cushion which is where I got mine
      Argos – coccyx cushion

      I hope all goes well and things get easier.

      • Annette says:

        Hi, thanks for the information. We’ll get the cushion as I’m sure that will help – someone else has also mentioned a repose cushion which I’ve been trying to track down. Just for the benefit of anyone else reading and still going through this – my son is now 6 days post op – still bleeding heavily – and a large amount of exuate still coming out the cavity. We’ve had a poor experience really at our hospital but yesterday we were referred to a tissue specialist (didn’t know they existed!) although the packing and dressings she has applied haven’t stayed on she is clearly very knowledgeable about this illness and gave us confidence as you have that things will get better. Annette

  104. al g says:

    Hi,
    just reading your website. I to live around guildford – I had the surgery in 1994 – things great for 14 years – no problems – then it happens again in early 2009 – and had surgery but it wasn’t so successful – bleeds every day and need to put several layers of gauze – finally went to my GP this week who sent me straight up to hospital Surgical assessment unit of the Royal surrey Hosp. I didn’t have the operation that day saying I need to get things prepared at work while I’m out on recovery. what surgeons have you see there.
    good luck

    • Colin says:

      Hi, really 14 years and then a recurrence, that’s unlucky, and it sounds like you’ve had a miserable second surgery. I’ve made a point of not naming any of the health professionals on the site, not because of any sinister reason except I think it’s not fair to them, they deserve their privacy. However I’ll follow up with you by email if you want to chat about it some more.

  105. Kapil says:

    Hi Colin,

    I came across your blog on the pilonidal.org website and it really stood out in the way that you have described your experiences.

    I am a 29 yr old Indian male who has not had any prior conditions or symptoms relating to this. I do have a lot of hair on my body (which i’ve discovered could also be a cause) and lead a fairly active life otherwise.

    I have in the past, had many instances of ruptured hair in various places which have at times lead to boils which eventually clear up in days/weeks and have never been a cause of concern.

    About two days ago, i felt pain near my tailbone but dismissed it as another case of a ruptured hair. The area swelled up by the next day which would probably have been caused due to formation of pus and it hurt a lot while sitting. Due to this, i went in for a checkup this morning and the doc informed me that i had this condition. He gave me two options, i.e. a) incision and drainage or b) getting the area surgically excised along with any pilonidal sinus tracts.

    I have already started a course of antibiotics and am also using a disinfectant to ensure that it doesn’t get worse. I wanted your view on whether it would be prudent to wait and watch for it to clear or should i go in for the surgery right away. I did read that you had wished for this clarity early on in your case and wanted to bounce this off you.

    I hope you get well soon.

    Many thanks,

    Kapil.

    • Colin says:

      Hi Kapil,

      Thanks for the kind words about my site, I’m glad it was helpful. I’m sure you’re in a fir bit of pain right now and I sympathise. As you said, I didn’t really hear the options you’ve been given from my doctor when I first discovered I had pilonidal disease. Your question is a good one and I definitely subscribe to the view overall that the earlier you have excision surgery the better really. In your case I would say that since this is the first time you’ve had an acute case of an infection, there’s a chance you could go for a more conservative option now and it might never recurr, though statistically the number of people who have a recurrance after an incision and drainage is fairly high. At least higher than those who have excision surgery.

      My personal opinion is that if you’ve got an acute abcess that requires incision and drainage, that’s a wound that’s going to require a fair bit of looking after anyway. I would go ahead and have an excision. If the surgeon feels confident enough to close the wound and leave you with stitches, it will actually be easier to care for, allbeit that you’ll need at least two or three weeks off work. If not you’ll have a larger wound which is going to take longer to heal but you chance or recurence is going to be a fair bit lower.

      Do let me know what you decide and I hope it goes well for you whatever happens.

  106. kamilla says:

    Hi Colin.

    I’m a 24yr old female (also a ps3 fan!!) I’m currently going through the healing process after suffering from my very first (and hopefully the last) Pilonidal sinus. I had my surgery on the 30th October and i’m still healing.

    Apparently i was told mine was quite “nasty” and was i think over an inch deep, just above my coccyx. Was yours in the same area? i completely relate when you say visiting the GP was becoming a chore, i work full time and i used to travel 20mins from work to pop into the drs and have my dressing changed then back to work… everyday! then district nurse on the weekend, much like yourself.

    Luckily i went to see my surgeon 6wks after my op and he was happy with the healing albiet there were some small hairs there, he showed my partner how to change the dressing which was alot more convenient although i still have to see the nurse every other day.

    I was curious, the very first time you had your pilonidal sinus, did you have just the 1 follow up appointment? i was a little concerned that 2wks before christmas he said i would dbe healed and when i finally plucked up the courage to have a look i knew it’d take longer than that although the nurse seemed happy i was kinda hoping i would see the surgeon again.

    I found your blog very interesting and it’s so reasuring to know that i’m not the only person with this. I really hope you stay pilonidal sinus free adn that you are on the mend… like i said i hope i never get another one.

    PS) Does the plastic surgery happen if there’s a hole left after healing? or if healing takes to long?… it’s been 8wks for me and it feels like forever!!.

    Thanks for reading,

    Kamilla

  107. Joyce says:

    Hi,
    I’ve found your blog very interesting to read, especially as my son is going through the same sort of thing.
    I was interested in your comment re people with fair skin being affected. Is there any research on this, do you know? If so, I’d like to read it.
    Good luck with the treament.
    Joyce

  108. Nat says:

    Hi Colin,

    Wow, only just found your blog on the pilonidal.org website, of which I’ve been a member for a while. I can identify with your problems with the NHS – I’m in Scotland and had my first surgery last year in October – closed surgery, of course after two weeks of things going well, it’s not closed fully since. I was so fed up of trying to get an appointment with my surgeon for a check up after the op (and i only met him five mins before I went under) I eventually saw him nearly 6 months later for my ‘2 month check up’ – he dismissively said it would heal. I took matters into my own hands, hunted down the nearest cleft lift surgeon, saw him earlier this month and now awaiting an appointment for him to perform it on me. I can’t wait. What operation did you go under for your 4th surgery? When did you have it? Hope you’re healing well, nice to have a UK person that identifies with the same problems! Happy healing, Nat x

  109. Carol Kerr says:

    Hi

    Thanks for a great blog! My 16 year old son has had 3 operations, first in Nov 2005 and has never healed. I am about to go to a private consultant to see if he can give me some answers as my sons consultant doesnt seem to care. He wears dressings every day and has one infection every 2 – 3 months. He just started another course of antibiotics today! I fear that he may never heal. I have read a few websites tonight and the recurring theme scares me.

    Strange thing is my son has a twin, he had the same thing 9 months previous and had his operation and healed no problem!

    I hope you heal, a friend has advised me to ask to see a plastic surgeon with the thought of having a skin graft, am not sure if that would work because of the location. I intend to call my GP tomorrow and ask his advice.

    Carol Kerr

    • helen halley says:

      hi there, my name is helen, i have had to bowel operations one in 2005 then one in 2008, since then ive had no end of trouble with my bowels and now i have a pilonidal cyst inside my rectum which is so sore it has its own pulse. ive been told that i will get another operation on it to remove this, will this be worth going to have done?

      • Barry perryman says:

        Barry perryman says:
        August 4, 2013 at 11:40 pm
        Hello. If you leave it you may make things worse. I left mine til the pain etc got worse. When they did remove it the hole they made was massive and I ended up with the vac machine and it took months and months to work. 6″ wide by 4″ deep and very painful. I think you should get it done and don’t do what I had done and left it to late. All the best

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