Like many others on this site, I went from despair to hope and back to despair again, from pillar to post with doctors, chiropractors and physiotherapists. If I could give you one bit of advice from my experience it would be: go see Dr Michael Durtnall (see Doctors and specialists in the UK, London) as soon as possible.
If, like me, you think he sounds wonderful but the chiropractor/ osteopath/ physiotherapist you're seeing now is also pretty good, and maybe they'll cure you, stop, and go see Michael. Even if you've heard that someone who had similar problems was cured by this exercise or that injection, ignore that voice in your head, and go see Michael. Don't talk yourself out of it. I wish someone had given me this advice before I wasted time and money and began to lose hope. I firmly believe he is the best chance I now have, a practitioner who is truly knowledgeable and specialised in the coccyx, and my only regret is that I didn't go to see him from the beginning.
My coccyx problems began in January this year, although they had been baking in my body for much longer. After a couple of bumpy long haul flights and many hours of sitting at work, I started to notice a pain when moving from sitting to standing. It wasn't always there and most of the time I didn't think about it, figuring it would go away like other aches and pains do. On days when it was bad I used a hot water bottle at night, and would sometimes go for a massage and hope it would get better with time.
Fast forward to May and another couple of flights later, and I couldn't ignore the pain any longer. I could barely sit and a couple of abortive attempts at using coccyx wedges at work didn't help. I went to my GP and was referred to an orthopaedic surgeon who did an MRI and diagnosed Coccydynia. Although I was hugely relieved that he found "no significant pathology" I still left his office disheartened: he offered no reason for my pain and no advice on how to live with the condition. He suggested a caudal epidural and sacrococcygeal injection but didn't even seem to believe it would work himself. We agreed I'd try physiotherapy first and overall I left his office with the distinct feeling that he found my condition uninteresting and was already thinking of his next operable patient.
I couldn't work anymore and I started to sink into depression. I felt different from everyone else - sitting felt like such a fundamental human right. I took some time off work and because I couldn't sit I also couldn't socialise anymore. After some (but not enough) research I had found and begun to see a chiropractor who was (partially) covered by my insurance and seemed confident he could help me. He dissuaded me from having an x-ray and diagnosed a subluxated coccyx tip based on my MRI, which he treated alongside advising me on how to minimise inflammation and strengthen my gluteal muscles. He was professional, positive and capable and I continued to see him for 3 months, avoiding sitting almost completely as per his directives to allow the inflammation to heal. To this day I believe he is an excellent chiropractor but unfortunately my case was too complex for him, and this is why it is so important to see someone with Michael's experience and degree of specialism.
Two and a half months into seeing this first chiropractor, when I began to sit a bit on stools or using a yoga block, I had a relapse. Needless to say I was devastated. He suggested it was time to investigate some of my surrounding organs (which I did) and consider having a steroid injection.
By now I had done more research and found this site (thank you Jon) and the Sayer Clinic. During my first appointment Michael took an x-ray and immediately saw that my coccyx was extended 40 degrees backwards (not front as the first guy had said), and not at the tip but further up at the sacrococcygeal joint. It was extensively calcified and basically in the process of fusing in the wrong position, causing pelvic muscular spasms and nerve compression. A normal coccyx moves 50-70 degrees; mine was only moving 5. As soon as he pointed to where this was on my back I knew he was the right doctor for me because he pointed to the exact epicentre of my pain. He even explained that it was slightly to the left because I'm right-handed and therefore likely lean a bit to the left when sitting.
I shudder to think what would have happened if I hadn't gone to Michael and my coccyx had fused completely, I was so close to that happening. Worse yet, what if I had had the injection and the pain had been numbed for a while ... I would have injured myself further and caused irreparable damage.
I've been seeing Michael weekly for two and a half months now and he says my joint no longer sounds like a "rusty hinge", it's moving 50-60 degrees. I'm not quite there yet and continue to use a wedge and minimise sitting, but I'll able to participate in life much more than I was. It hasn't been an easy journey - I developed bursitis in both hips from months of standing and leaning on my sides in awkward positions, which caused me further pain. However, I finally feel confident with Michael that I can relax and trust the process, which is not an easy thing for me to do, believe me! I'm about 60% better and I know it won't be a quick fix, but I'm so relieved to be getting better and have hope. I've also been seeing Marta who is a truly gifted physiotherapist, and she's helping me understand how to relax muscles that have been braced for months because of pain. I feel like the investment of money and time in the Sayer Clinic is money well spent. And after all, if I want to get better, what choice do I have?
Michael, Marta and everyone I've encountered at the clinic are exceptionally lovely and have put me at ease. I cannot thank them or recommend them highly enough. Please, if you're suffering, take heart in knowing there is someone who can help.
Note from Jon Miles:
I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.