I’m not going to pretend I understand your situation. I obviously also don’t know what is best for each person. What I do know is that I wish that I had been better informed at the start of my symptoms and I wish that I had sought surgical treatment sooner than I did. You can read my story, for more on why I say this.
Given these factors, if you’ve recently been diagnosed with Pilonidal disease, or think you may have it, or if you’re considering treatment, I present my argument for seeking medical advice and surgury, and hope it helps you. (I stress again this is based on treatment I received in the UK)
The pain of surgery wasn’t as bad as I thought it would be
For me the pain and discomfort of the flare ups before treatment, were a lot worse than the pain of any of my surgeries. I can’t stress this enough. I had read and heard a lot of bad things about the pain of surgery but every surgery I have had and that’s four to date, has not been particularly painful, at least not nearly as much as I thought. I’ve been out of hospital the next day at the latest, walking around albeit slowly and carefully! The first three times, I have not needed painkillers for longer than the first few days. Wounds left open are more painful but not hugely so, as an example I would say probably less painful than a broken limb, and certainly not the most painful surgery I’ve experienced.
The longer I left it the worse it got
By the time I had my first surgery I had developed two sinus tracts rather than the one I started with, this suggested that my abscess was aggressive and growing. During excision surgery the surgeon has to remove all the diseased tissue and the tissue surrounding the sinus tracts. The longer and the more sinus tracts you have the larger your surgical wound is going to be.
My immune system didn’t thank me
I have a strong suspicion that the years of suffering with Pilonidal disease have weakened my immune system. It makes sense to me that if your body is constantly having to fight a Pilonidal infection then it can’t react as well to other infections you may pick up. I have suffered for years now with pretty bad, persistent mouth ulcers which I’m 99% certain correlate with my Pilonidal Sinus. In the short periods when my Pilonidal has been under control, they’ve disappeared. I’m almost as keen to get rid of the ulcers as I am the Sinus!
After a few people have seen and poked your bum, you forget about it
I was quite embarrassed at first about my condition. Rightly so I think, it’s not nice, but believe me the doctors and nurses have seen it all before. The medical staff I have seen with my Pilonidal have all been lovely to me, throughout my years with the disease and multiple stays in hospital. At any rate once you’ve had a few people look at your bum and prod it around, you realise that it’s no big deal.
Yes surgeries aren’t all successful but even a failed surgery is a step in the right direction
I have had four surgeries so far, two with simple primary closure, the third a z-plasty and a fourth, which was left open and is healing at the moment. So my past surgeries haven’t been successful, and I’ve often thought to myself was it worth it? It’s a tricky one, but the conclusion I’ve come to is yes. Even though my Pilonidal disease isn’t yet cured, and the despondency I felt after each surgery was greater each time, it’s probably less painful now than before the first surgery, and at least I feel there is a light at the end of the tunnel. I know I couldn’t continue to live with a PNS that periodically flares up knowing that it would likely be like that for the rest of my life. At least with the surgery there is always hope that it will be cured.
[ Accounts of my past surgeries: Surgery No.1 | Surgery No.2 | Surgery No.3 ] I’m currently healing from Surgery no.4 and am posting updates in the blog part of the site.
So …
Please go to see your GP and get referred to a consultant with an interest in Pilonidal Disease if possible. It’s not a particularly exciting condition for surgeons, but there are some out there that have a special interest, and make sure you discuss your options. I’m not going to recommend one surgery over another. It’s up to the consultants to decide what they think will work best for you. They’re the people in the know, you have to trust them, and I have a strong belief in the way the medical system works and trains people in the UK, from General Practice to the NHS and in the private sector as well. The NHS may have some failings but in my experience very few of them are due to the medical staff that work within the system on the ground. Just go in armed with the knowledge and a clear idea of what it is that you want to happen. My sympathy is with you, and I wish you the best of luck with your treatment.
