u/Haunting_Culture_494 — reddlx

I just wanted to share my experience with deroofing on the NHS (Scotland) after folk were kind enough to share theirs on my earlier post!

For background, I'm 34F from the UK, and I've been dealing with severe tunnelling and near-constant filling and draining on both sides of my groin for almost 10 years. I had my first flare up about 15 years ago, and since then they treated them as Bartholin's cysts due to the location, but I was referred to gynaecology a few years ago after moving up to Scotland and HS was diagnosed instead. My flares have always been in my groin, but this year I got my very first flare in my right armpit (yay! 💀). I've tried almost everything for relief over the years: Hibiscrub, tea tree, gentle washes, glycolic acid, witch hazel, sitz baths, epsom salts, Sudocrem, Clindamycin cream, various oral antibiotics, hydrocolloid plasters, castor oil, medicated talcum powder. You name it, I've tried it (and usually paid for it out of my own pocket, esp when I lived in England!). Surgery was my last resort, and I was absolutely terrified.

After spending 18 months on the waiting list, I had deroofing on both sides of my groin yesterday. Gynaecology performed the surgery. I fasted all day, had general anaesthetic (my first time and I did freak out a bit beforehand!), then was given local anaesthetic in the area (which I only found out after I woke up and realised the area was numb). They explained the wounds are quite deep and also vertical: on the right side it's 6cm, the left side 5cm. They've been packed with Jelonet, a paraffin gauze dressing, which I haven't yet had changed. I'm hoping that doesn't hurt! I've peed around it and nobody seems bothered by that, possibly because it's sealed? I'm currently waiting for the doctor to come by, so I'll ask all my questions and try to update this thread later.

When I woke up, I was *woozy*. Nobody seemed concerned; they said the surgery went well, there were no complications, and I was behaving in an expected way. But, having never had general anaesthetic before, I felt a bit unwell. I took a while to fully 'straighten out', probably a couple of hours, and had a wee bit of nausea that resolved quickly, but I remained very tired. I had a disturbed night due to my poor ward-mate(?) having a much tougher time, but I'll sleep when I get home, which should be later today.

I have zero pain. I thought the local anaesthetic was doing all the work for me, and I was given 10ml of Oromorph (oral morphine) pretty soon after I woke up, but I probably could've done without that. It's now just over 13 hours since I woke up, and I'm feeling fine. I haven't had any pain relief since, not even paracetamol. There's some slight discomfort if I sit on it wrong, but I've been for a brief walk this morning and could move fine, if a bit slow. I have a few bruises (mostly from the cannula tbh!) but minimal soreness, and I've got a history of bad hips and have fibromyalgia. I have however had very heavy bleeding. The first time I peed, a few hours after I woke up, it was quite the horror show, but a nurse was with me and wasn't concerned, so that reassured me. She gave me a gigantic pad and I've since gone through 3 more. The bleeding has now lessened and isn't as shocking as the first time, probably just a bit worse than a bad flare up draining. Very minimal discomfort when wiping/cleaning so far.

I'm still waiting for the full discharge information, including wound care, but I've found the instructions for use for the gauze they've given me, and I'm sure they'll provide me with more supplies/a prescription. I'm expecting to take 1-2 weeks off work then return fully remote and maybe do fewer hours, with a full return after 6-8 weeks, all being well (I work a hybrid office job, nothing too strenuous).

Hope this all makes sense, and I'm happy to answer any questions I can!