This is the first time I have ever really used any kind of support website so please excuse me if I get any terminology wrong or anything. But I just wanted to share my story of my experiences with the dreaded pilonidal sinus.
I’ve always been on the larger side, and I’m naturally hairy so obviously I’m a prime candidate for PS. I was midway through puberty when I was first diagnosed with it. My symptoms were slightly unusual in that I had never (and still haven’t) had the tell-tale sign of an abscess, nor any real pain that I’ve noticed. Now, I have a history of Asthma and I suffer from a lot of skin irritations and I was always itching (especially back there) as a child. And as such, thought it was due to my allergies.
However it wasn’t until I started to notice blood on the toilet paper that I knew something was wrong. Naturally I assumed it was something to do with my bowels so I got my Mum to ring the doctor straight away. Straight away the doctor knew on sight – it wasn’t coming from my insides, it was a pilonidal sinus. There was no abscess, no pus, but there was a split in the skin which had a deeper hole underneath. Eventually I was admitted for the standard drain and incision procedure with an open would which required daily dressing.
At 15 years old you can imagine this is a bit of a drag on your confidence levels and your social life. But my school were great, even arranging a visit to a practice nurse on a week-long field trip. However something wasn’t right and the would just wasn’t healing even 6 months on. Went back to the hospital consultant at Birmingham’s City Hospital and they booked me in for another drain. This time however, they were more extensive and actually found the hole was much deeper than it initially appeared and managed to remove up to 10cm of thick clumps of hair.
Back to daily dressings (by now I’d started college) but thankfully it healed up after a few months. In the meantime I had gone on a strict diet and went from over 18 stone to 14. I also had laser hair removal on that area (done privately as NHS deemed it a cosmetic issue) and the problem never returned, until about 10 years later. During the past few years I have put a lot of weight back on so of course, my risk level was increased. I used to occasionally get surface splits in the previously affected area but nothing that some moisturiser or Vaseline couldn’t fix.
However a couple of years ago (age 26) I would wake up and find that my pyjamas (and bedsheet) were covered in blood. Drenched. For a few months I suffered in silence until the bleeding became more frequent and then I got an emergency appointment with my GP. A 1x2cm hole about 2cm deep had opened up about 3 inches below the previously affected area so I had it packed and dressed every day until it healed. 2 months later it appeared again in the same place, same treatment though I was referred to Sandwell Hospital to see a specialist.
By the time he took a look and my surgical appointment was booked the hole had healed again, though they still performed a small exploratory operation to make sure no tracks were under the skin. There weren’t, but I was informed that if the problem occurs there is a more drastic procedure they could try with better results in terms of it not returning. The Karydakis Flap (or cleft lift) procedure. As of about January this year (one year after I first went back) another hole had appeared in the same place, though smaller. My GP referred me straight to the specialist again who took a look and decided that the Karydakis op would be for the best.
I was put on the admission waiting list and in July this year I finally had it done. I had no idea it would be such a large area removed from me and it was a bit of a shock to see how it looked after the surgery. After having a drain attached for a week, they removed it and the nurse said it probably wouldn’t need dressing every day. Unfortunately I got an infection and ended up back in hospital for two days being pumped with IV antibiotics. A drain was attempted to remove any poison underneath the fleshy flap but it was unsuccessful. However after being on a strong course of drugs it looks like the pus filled area is starting to heal and the rest of the scar is healing really nicely (about 5 weeks on now).
I’m having to go in for daily dressings to cover both the infected area as well as having the small incision from the drain packed, however this is almost healed after just 2 weeks. Honestly, this whole experience has left me exhausted. I’m mostly OK in myself but sometimes, especially after the setbacks mentioned above it gets me really down and depressed. The practice nurses have been wonderful and have given me the option to talk to a trained counsellor about it but so far my mood has improved since the healing is coming on better. I’m hoping that this is the last I will ever have to hear about PS again, and I am going to make a definite effort to lose weight again and to generally be more healthy to reduce any risks of it coming back. If there’s anything I’ve learned from my own experiences, it’s these:
– Be proactive. If you suspect anything is wrong, whether you’re had one before or not, get to your GP straight away. Otherwise it’s only going to get worse and take longer to beat.
– Lose weight. During the ten years or so in which I was at an ideal weight, I had no problems at all. It was only after I put it back on that the worse happened.
– Hair removal. Speak to your GP about laser removal. If you can get it on the NHS, great. If not, it’s worth saving up to get it done on the area. Most hospitals can do it so they won’t have problems doing it on such a private area whereas salons or high street places might. After the hair removal, I never had another PS apart from the odd surface split.
– Insist on dressings. I was told after my Karydakis op that I wouldn’t need dressings and ended up with a bad infection which has put me back by weeks. Make sure a district nurse or practice nurse is dressing it every day for the first 3-4 weeks.
That’s about it from me. Apologies for this becoming such a long post, it’s just that I’ve had this for years and finally it seems like there’s light at the end of the tunnel. Thank you all for reading and if there’s any questions I’ll try to help as best I can based on my own experiences over on the forums. It’s a horrible condition and one that always hangs over its sufferers but hopefully by sharing it’ll be easier.