Pilonidal Cyst

[hartof]

My DD14 just had surgery for one we discovered last night it was between her bum cheeks. If you've had surgery for one what did you find helped recovery? I'm very conscious we've got a hard road ahead, she doesn't cope with pain well and I'd like to make her as comfortable as possible.

My 19yo son had one last year in exactly the same place. It was more uncomfortable to be honest then painful. It’s really important you keep it very clean, we went to nurse every day for 3 weeks and she cleaned and changed dressings. It’s a slow process but she will be fine.

I had one operated on when I was in my early twenties. Fortunately my mum,a nurse, insisted on dressing it every day for a month until it completely healed over. I can still remember the pain involved ( I’m sorry OP, I have a high pain threshold but the dressing process is the only time I have ever come close to fainting).
Anyway, first tip take painkillers 30mins before cleaning and dressing.
Make sure you keep up with regular doses of painkillers don’t wait until pain builds up.
I slept with a bean bag ( one that you sit on ) behind me to stop me rolling in the night and waking myself up.
Rubber ring to sit on.
I had it done 35 yrs ago but can remember very clearly how painful it was. I had a lumpectomy and therapeutic mammoplasty done 10 weeks ago and already I’ve forgotten the pain involved!

I had one when I was about 18/19, and had surgery on it.

I had it dressed by a nurse daily for quite some time. I’m trying to remember whether warm baths were recommended or not. Hopefully you will have been given some information on that when your DD was discharged.

Like @Angrymum22, I found the dressing process excruciatingly painful, especially early on when they were using strips of gauze. (I had a different procedure later, for which the dressing process was different and involved pieces of foam, IIRC. That one wasn’t as bad).

My mobility was a bit limited for a while. I had to do my A Level written exams lying on cushions onthe floor of a teacher’s office.

Hope your DD’s recovery is quick. I imagine plenty of sleep and plenty of fruit and veg will help the healing process along.

Thanks for the replies we were sent home this afternoon, she had her first dressing change there after paracetamol, ibuprofen and morphine and was still in a lot of pain. I am hoping that because it was put in by the surgeons that the one the nurse has done won't be as tight. We've got a district nurse coming to the house daily from tomorrow, I've been told to make sure it's packed with Flaminal so I'll speak to them about that tomorrow.

Keeping on top of pain relief and hospital have prescribed some codeine that I can pick up tomorrow. She's coping much better than I thought she would.

Just be aware that Codeine can cause constipation, so maybe introduce some prunes or raspberries into her diet. I’m sure the DN will give advice about that.
Best of luck for a swift recovery.

I had one in my late teens. Daily dressing changes for quite a few months (I was a slow healer). Personally I didn't find it as painful as others up thread, though it was annoying especially as I was in my second year at university and it meant getting out of bed early every day! Got me out of the habit of sleeping in anyway.

I’ve had 6 😩

Worst pain was the first through NHS when they took the bandages off the next day, they were stuck to the wound with dried blood etc and I nearly passed out through the pain.

Other ops were at private hospitals where they used Sorbsan (?) which is much less painful. Bathing lots helps the pain, lying down on your side at night, extra cushions etc.

@waterlego

I had one when I was about 18/19, and had surgery on it.

I had it dressed by a nurse daily for quite some time. I’m trying to remember whether warm baths were recommended or not. Hopefully you will have been given some information on that when your DD was discharged.

Like @Angrymum22, I found the dressing process excruciatingly painful, especially early on when they were using strips of gauze. (I had a different procedure later, for which the dressing process was different and involved pieces of foam, IIRC. That one wasn’t as bad).

My mobility was a bit limited for a while. I had to do my A Level written exams lying on cushions onthe floor of a teacher’s office.

Hope your DD’s recovery is quick. I imagine plenty of sleep and plenty of fruit and veg will help the healing process along.

God yes, the private hospital was horrified that the nhs had basically ripped the gauze out, after it had soaked up the blood for 24 hours, no pain relief, no warm bath to soak it, nothing. I had a 30 hour labour with my first child and changing the dressing was hands down more painful.

My SIL has had 5 and I'm hoping DD isn't heading down the same path. I am determined to make this heal, ordered hibiscrub and I'm going to get the dettol laundry cleaner for her washing. She was born with blonde fuzz all over her which she's still got, the dr recommended removing the hair so we'll get some veet when she's healed.

@BanditoShipman, I was never given pain relief for the dressing changes either. It really was immensely painful- like others have said, I felt like I might pass out (have never felt faint in any other situations in my life). I soon learnt to take a couple of paracetamol half an hour before the nurse arrived.

I second what everyone else has said.
I had one of these 40 years ago and I still wince at the pain, not just of the actual sinus before surgery, but the dressing changes!!! They have to pack open the wound so it can heal from the base up. The surgeon stuffed in loads of ribbon gauze whilst I was under GA, and the poor nurses had the awful job of trying to get it out for the first dressing change when the blood had dried. I screamed the place down, the nurses were in tears - it was hideous.
Sorry!!

I described it as feeling like someone was scraping a butter-knife across my spine. Hearing me screaming aged 15 as the medics changed my dressing is the only time my dad’s ever come close to “losing it”.

First time was definitely the most painful - of course I feel down the stairs a week later.

In the end I tired of the pain of nhs treatment and took to bursting them myself and having lots of long hot salt baths.

Haven’t had one for 20 years now touch wood.

Oh I'm so sorry for you all, I think that's what happened to DD on her first change today. DH was in another room and heard them saying they couldn't pack it like the surgeons do as it's cruel. Reading about flaminal it seems it adds some moisture to the wound as well as helping to heal so I will ask DN tomorrow about that.

I had one when I was 13 - I’m 26 now. My mum was really great and learned to ‘pack it’ herself so the district nurses didn’t have to come every day. Not sure if you can deal with that though, it was pretty gross. Unfortunately mine came back so I had to have the op redone several times (I think 3 times). They used aquacel AG (no idea how it was spelled) to pack it which was really good at helping the healing process. Obviously it was really painful to have the dressings changed but she will get used to it - I can’t remember how long it took to heal in the end but it was a while. I also was really keen to go back to school which I think made things worse - being sat down/moving seemed to increase the amount the wound wept/leaked fluid. So definitely encourage lying down and keeping pressure off it! I hope she’s okay - I’ve been left with quite a bit of scar tissue there which I used to be really insecure about so I hope that doesn’t become an issue for her x

I couldn't pack it myself as she would just argue with me, she won't argue with a nurse. That sounds very much like the gel I have been told about. The nurse on the ward said she can go back to school on Wednesday, no chance. Walking up and down stairs to lessons and sitting on hard chairs and being hustled around in corridors. I've told school she won't be back til new year and she will be able to complete work online which they are happy with.

I had one a couple of years ago, and I'm not going to lie the packing and dressing was so bad, the first few times I had to bite a towel! It for better though as time went on and the wound got smaller. The first one the nurse did but it was still numb from the local the surgeon injected after. My partner learnt to pack it so I didn't have to go to the gp everyday on a bus (wouldn't of happened as i couldn't sit down)
We used to wash the wound out before changing the dressing with the shower head on a low pressure as advised by the surgeon. The nurse who 'packed' mine was bloody useless, all the gauze was falling out !! The surgeon applauded my partner and said has he thought about a job doing it 😆 I feel for your daughter, it really isn't pleasant but hopefully with good packing and keeping it clean it should heal nicely. Mine took about three months in total.

Oh and work wanted me back in the next day, I worked in a nursing home and they said I could get it changed and packed at work !! Ridiculous !

This is the stuff you need, Sorbsan, it dissolves, www.wound-care.co.uk/sorbsan-flat-dressings.html

I am also covered in fuzz, I’m not sure I’d use Veet, that will make it grow back sharper possibly and more likely to grow in? Maybe laser on that area?

I learnt to avoid long car/train journeys as a cyst would usually start a week later.

Eventually I had 2 big ops to take the whole area away. Left me with a 6 inch scar but solved the issue and I haven’t had one for 25+ years.

And sending hugs to everyone else on the thread who had the day old dressings ripped out! I remember the agony!!