My story starts when I had a small lump appear at the top centre between my buttocks around 2003-4. It just looked like a small red pimple but it didn’t go away. I saw my doctor and was referred to specialist who told me immediately that it was a pilonidal sinus. I had no idea what that meant but the specialist explained it to me and told me I needed an operation. I had the operation which was an excision where they left an open wound to heal by packing it. After it had healed up I had a good 10yrs or so with no recurrence and then after a flight on holiday when I got off the plane I had blood on my underwear. It wasn’t excessive but over the coming year or so what would happen was that in the scar area a small section looking like a cut you might have on your hand would open up, bleed a little over 4-6wks then seem to heal over but then recur again after anything from 2-8wks. I went to the doctor and was referred to the colorectal team in my local hospital. Eventually I was scheduled for an operation but when I awoke from the general anaesthetic they told me the surgeon had decided not to proceed as the area looked like there was no sinus. I knew that this was likely to it having healed over on the outside as it did periodically so was pretty let down. Sure enough within a few days I had it open up again and bleed. What proceeded after this for 3-4yrs was that I got bounced between the colorectal team and the plastic surgery team. Neither felt they could help me, and I ended up on one occasion where the registrar for the colorectal team was shocked at the amount of bleeding and the mess that was clearly visible in my scar area. He went out to get the surgeon but the surgeon wouldn’t even look at the area saying that I’d been in before and that I should just try and “manage it conservatively”. I asked the registrar what this meant but he was none the wiser. Eventually a friend of mine who’s dad is a retired gynaecologist and has friends in the medical profession asked me to send him an outline of my issues and that he would ask his dad. His dad so kindly put me in touch with a colorectal specialist. I booked a private consultation initially to get a second opinion. This guy was brilliant. He told me to take my time and explain everything, he sat back and just listened. He then inspected the area and told me that there was no “managing it conservatively”, and that I had a clear pilonidal sinus that needed surgery. He proposed a limberg flap procedure and I booked in to have the operation. Although he wasn’t local I was able to get this done via the NHS in the UK rather than privately, my doctor referred me to him. I did have one operation date cancelled due to pressure on the NHS but eventually had the limberg flap operation in April 2017. He advised me that I should not sit down on the area for around 8 weeks to allow it to heal properly. Sure enough it healed very well, I just had one stubborn area that took longer to heal but with a local nurse at the doctors surgery packing it weekly it finally healed over fully after about 8wks. Now nearly two years later there has been no recurrence of the sinus but I have serious pain in my coccyx area. The doctors just wanted to throw pills at me but after trying 6 different types of pain killer without any real impact I then had a steroid injection around August 2019. This didn’t resolve the pain fully but did reduce it a fair amount. However as it has worn off the pain has returned even worse than before. The pain I have I think is from the scar tissue rubbing the coccyx itself as the surgeon didn’t go near the coccyx to damage any nerves. If I am sat down and I move around a bit I feel the scar tissue grinding against my coccyx and then it will free itself off the coccyx like an elastic band being flicked and I get a huge jolt of pain. I am now nearly unable to sit down. My local pain clinic specialist has advised he can try a steroid injection once more, but if that doesn’t work he will opt for a ganglion impar block. If that fails the pain clinic has advised that the only other option seems to be an implant to permanently disrupt the nerve signals but I would like to understand if there are further options. I haven’t yet seen anyone else with this issue and that makes it hard as I don’t feel the doctors or specialists always really understand, they just assume nerve damage and the next logical conclusion is painkillers wheres I feel something else needs to be done to deal with the underlying cause.