Pilonidal misery

[ispyduck]

Hi all.

Started with tailbone pain around age 16 (now 32). No idea what it was and doctor didn't look and just diagnosed 'growing pains'. It eventually burst after much agony and I didn't think much of it until it returned about a year later. This time I had a surgical lance and drain and months of packing which I found so horrific and embarrassing as a teenage girl.

It recurred 10 or so times over the next 10 years but I was so determined not to experience the packing again that I just let them burst or managed to stave them off with antibiotics and warm baths. Once it was pretty bad and I remember a doctor just popping me on the bed and slicing it and letting it drain. No anaesthetic. Absolutely horrific 😣

It came back again around 3 years ago and I wouldn’t even go the doctor out of fear so left it. Unfortunately it went deep this time rather than coming out and my husband forced me to hospital as I was in agony. I’d had a baby since and would rather experience child birth any day, honestly. A surgeon convinced me to have surgery after I tried to let him send me home with antibiotics and I had a wide excision and around 4 months of packing. I thought all was fixed as they’d basically scooped out half of my back 😂

Got the familiar pain starting last week. I’m just distraught and don’t know what to do for the best.

I don’t really know what I’m looking for other than perhaps a handhold and a chat with somebody who knows what this is like. I get sympathy from family and friends but none of them can really understand the way this takes over my life and how it can make me feel so depressed and upset. Most just think it’s some sort of boil on your bum and that a warm flannel will fix it up!

What a literal pain in the arse this is 😔

Didn't want to read and run. It sounds really painful, and I can't believe how many times it's recurred for you 🥲
I have a painful bump that appears there periodically...I always worry it will need further treatment but so far I've managed to stave it off with antibiotics. No one has actually diagnosed it as pilonidal cysts but they seem to think that's what it is.
I hope you're ok xxx

I don't have the same issue as you but I do have a chronic recurring pain condition.

I can completely sympathise with people being sympathetic but not understanding how horrific it is to live with the pain.

Also that horrible feeling knowing that you are having early symptoms and it is going to flare. The feeling of I can't do this again. It becomes all consuming and any twinge makes me feel so anxious that it is returning.

One of things I have found really helpful has been joining a support group on Facebook for people suffering the same condition as me. It makes me feel so much less alone.

Thank you so much for replying 😊

I'm trying not to dramatise as I know it's by far not the worst condition to have but I do find it hard to talk about and find support when it's mostly associated with overweight, hairy men. I remember seeing a specialist around 2 years ago as my scar had split open and he introduced himself as the doctor who had performed my original surgery when I was a teenager and asked if his nurse could come and say hello because they'd written a paper about me together apparently as I was such an anomaly.

I'm definitely going to have a proper search for a support group though. It's the loneliness with it that makes it so much worse.

Gosh, that must have been strange to hear that!

I know what you mean, I had a couple of friends (male) who had them as teenagers and remember the packing and then being in a lot of pain afterwards. It's a strange thing really, and it's so annoying that they reoccur so readily xx

So sorry to hear. I had one at 15. So paranoid about it coming back. I'm "lucky" it only appeared once, operated on and packed and it's not happened again. But I'm finding that ever so often, the scar hurts.

I'm hoping it's just some scar pain. It has happened occasionally over the years but I jump to the worst conclusions 😬

Sympathies! My brother broke his coccyx years ago and that caused him to suffer from this. It would erupt every 2-3 years and he would be in agony. He finally had a surgery (marsupialisation??) about 5 years ago, it was a much bigger deal than he expected with packing needed for many weeks but he’s not had a recurrence since.

crossing my fingers for you.

We've experienced this with a family member. The pilonidal centre in Portsmouth is very highly thought of, esp a doctor called Asha Senapati. People travel for surgery and stay in a hotel for a few days if they don't live nearby. She performs a surgery that moves the cleft of your bottom slightly and has very good results with non occurrence. I think you can pay for the initial private consultation and then get the surgery with nhs. In our case we were couldn't get a wide excision to heal and she was happy to do a cleft surgery, but we delayed a little to give the excision a good chance and eventually it healed- 10 years free or recurrence so far, but if it comes back we'd go straight to Portsmouth

If you Google the centre and her name you will find lots of information