My story

[Julie]

Hi all.

This is the story of my pilonidal sinus, however it is mainly about the issues I've experienced since having the sinus removed.

I had a recurring bump in the "region" for around six months before I went to the doctors to have it looked at. Once I went to the doctors (just under four years ago), they diagnosed it as a pilonidal sinus. Options weren’t really discussed, just that it had to be removed by an excision.

When it came to the operation (06/10/2006), again the options weren’t really discussed, they just knocked me out and did it. When I came round after the operation, I was quite surprised; the sinus had appeared only to be on one buttock, however the excision had been performed on both sides, going right down into the cleft of the buttocks and up the other sides. The wound had been closed and stitched – a technique called “marsupialisation” I was told afterwards. It had been stitched on each buttock individually, with the stitches being down the central cleft.

I had a lot of pain on returning home, which I knew was to be expected. Unfortunately, one night in bed, one side of the stitching burst, which then left the wound open. The practice nurse came to see it the next day and sent me to A&E to have it examined. At that point, they said it was too late to stitch it back down, and so it was left open. District nurses came to my home to clean and pack the wound daily thereafter, however over the next few months I had numerous infections, and the pain never went away. The wound took over 3 months to heal completely.

The wound is now fully healed, however the pain still remains. I have been to see numerous consultants and pain management specialists about the pain, and they have yet to offer a reason for it. I have had an MRI scan (with no staining) which revealed a small amount of scar tissue around the area, but again nothing that would account for the pain I experience on a day to day basis.

Currently I am unable to sit down for longer than around 10 minutes without the pain manifesting itself, and I have tried sitting in every conceivable position. If I am forced to sit for a long period (for instance on a journey), the pain becomes really severe and persists for days afterwards, leading to extended periods of absence from work, which is obviously causing issues. I’m also unable to lay on my back and unable to bend much, which means many activities are out of the question.

So far, the treatments I’ve tried are: Co-Codamol, anaesthetic patches applied directly to the area, acupuncture,steroid injections, pregabalin (nerve inhibitor) and hyaluronidase injections to try and disperse the scar tissue.

Yesterday I went to see a different consultant at a private hospital to see whether they could offer another opinion, however they basically said they couldn’t think of a reason for the pain and suggested trying amitriptaline and and a steroid cordal injection.

Does anyone else here have similar experiences, and if so, is there any advice on offer for a possible long term solution to the pain? Even short term would do, as long as it meant I can start to do the everyday activities that have been denied to me for the last four years! One thing that was mentioned sometime last year was that my coccyx could now be closer to the surface than it used to be (ie. less padding) and the pain could be linked to that? Does anybody have any ideas on how to deal with such a situation?

Many thanks all, and apologies for the essay!

[Steven]

Hi Julie, it sounds like you've received some professional advice on this so I don't know whether anything I say will help at all. I too used to experience pain when sitting after the area had healed. It turned out that it was still infected underneath and needed several further operations to fix this. I'm not sure whether that could apply to you though as I think the MRI scan which you had would have detected this? 10 minutes seems like a really short amount of time. It must affect your way of living a great deal. I guess you could try even stronger pain killers although that wouldn't be much of a long-term solution. Have you tried some of the coccyx cushions that are available?

[Julie]

Hi Steven
Yes I had the MRI a couple of years ago and I guess it would have shown if I still had an infection. Its just so frustrating that no one I have seen seems to have an explanation for the pain. I have tried the coccyx cushions which help a bit - but these aren't very practical and I only use it at home or if going on a long journey