My story.. over a year with this nastiness

[aroncmc22]

Hi guys n gals, I'm new to this forum so I thought I'd share my story to introduce myself.

First of all let me apologise as it's quite a long one!..

It started over a year ago.. well probably about 2 iirc when i found a lump about the size of a pea at the top of my crack (by my tailbone) but didn't think too much of it as I've got little hard fatty lumps in various places on my body(arm,chest etc) which have never given me any grief before and docs had told me were nothing to worry about (just little cysts).

I left it for a couple weeks and then it started to feel like it was getting bigger so fearing the worst I got myself along to docs. He told me it was a just another cyst and it was it slightly inflamed so he gave me some antibiotics and painkillers (paracetamol and ibuprofen) and sent me on my way. The anitbiotics seemed to work and it settled right down (well smaller than pee-sized) and didn't give me anymore grief for a couple-few months.... if only that was the end of this

So after about 3 months it flared up again with no warning whatsoever... so back down the docs and yet another course of nasty (heartburn-giving) antibiotics but this time they didn't even slightly work and within 3 days i was back down the docs with a lump nearly the size of half a golf ball.. This time it was a different Dr who diagnosed it as a 'Pilonidal sinus' and said i'd have to get myself to the hospital immediately as it needed draining.

After 2 days of waiting in hospital in complete agony and getting really fed up with being told i'd have to wait another day (because of lots of emergencies going in front of me) a Dr that was training to be a surgeon approached me and said she was willing to drain it under local anesthetic if i wanted to get out of there sooner and didn't mind a little discomfort...YEAH RIGHT!!! ... But not knowing what to expect i said yes.. stupid mistake as i've never experienced pain like that in my life! The anesthetic going in to the infected (somewhat puss-filled) felt like boilng hot acid under my skin and where the area was so inflamed it didn't even work properley so i felt everything! ..Would not recommend that to anyone.

A month of having packed and dressed every day by a nurse (and nothing can prepare u for that first packing!) it closed over and healed (or so i thought). Less than a week and it flared up again and popped itself within a day or two so another couple weeks of dressing. This went on for about 2-3 months before it finally stopped coming back.
...Well for about 6 months anyway!

This time when it flared up again it was less than 48hrs between me feeling the first twinge to it being a half golf ball sized agonising lump again but this time they put me under general anesthetic and drained it and apparently removed 'the sack'!?? It turned out to be about 5cms deep this time round so took over a month of dressings and packings for it to heal but when it did it didn't re-appear like last time well at least not until feburary the 14th anyway!! During this load of dressings my girlfriend started to come along as she wanted to learn how to do the dressings (and packing!) .. I thank god for her everday! So when it did come back (ruining our valentines dinner) i knew it would pop itself as the scar tissue wasn't even healed fully

Anyway to cut a long story short since feburary i haven't had to go into hospital to have it drained again as it flares up every few weeks to a month so it pops itself and then my wonderful girlfriend packs and dresses it but a colorectal specialist i saw in May said that all the shaving and washing etc in the world wasn't gonna help and he's booked me in for a 'Limberg flap' operation

... but now i'm not so sure that i wanna go through with that as i've got used to living with it now and it doesn't stop me from going to work as i never need to go into hospital for drainage or surgeries etc for dressings and i've already had lots of time of work and bosses are starting to get really peeved with me.

My biggest fear is having the op and then it coming back again and being back at square 1 again.. only if it did come back i'd have to go back into hospital as it'd be skin from my glute over the area..

So what should I do? Anyone got any experience with the limberg flap op?

Ps. I'm a furniture delivery driver so not the ideal job to have a pilonidal sinus (not that there is any ideal job for this hellish condition!)

Thank u for taking the time to read this and I hope it wasn't too painful for u!? lol

[Steven]

Hi, thanks for sharing your story. I didn't find it long at all

I think everyone struggling with pilonidal disease goes through this same thought process at some stage. It seems like you've lost confidence in these operations and you're now wondering whether you can avoid the possibility of enduring another failed one. In these cases though, many people often minimise in their head the true level of impact the condition has on their life.

So although the current state of your condition isn't preventing you from working, and you've even managed to become accustomed to living with it, I wonder just how much better your life would be without it?

And, if you do postpone it, how long for? 1 year? 5 years? Forever? Until your boss forgets?

Unfortunately there's always a risk of failure with these operations. I'd like to emphasise though that lancings are rarely successful. Usually they're only performed as a temporary measure to relieve immediate pain. Considering that, it wouldn't be fair to include it with the general anaesthetic operations when thinking about success rates. Also, a junior doctor performed it.

Talking about the Limberg Flap specifically, it's actually one of the few pilonidal related operations which I haven't had. I looked at a few references explaining the treatment and it seems to be one of the plastic surgery operations which involves "obliterating the midline cleft". That, I have had a lot of experience with. It basically means when the groove between the buttocks is completely filled in with the surrounding skin. It provides for a much better healing environment because there is no longer an area where bacteria, loose hair and perspiration can gather. Instead, the pilonidal wound will be exposed to the fresh air. The downsides are that cosmetically, it's a bit of a nightmare but then again it's not designed to look good! Another downside are the risks involved with such a type of surgery (but I'm sure your surgeon will have explained them). The statistics I looked at for the Limberg Flap indicated that 16% have wound complications and the average time to return to work is 16 days.

Hope that helps.