Becky, UK (Warrington, Cheshire) - firstname.lastname@example.org
June 2015: Started to experience pain when sitting after a long car journey down to South Wales on holiday, which gradually got worse. After visit to my GP I was told that it would probably wear-off and there was nothing that could be done. After a few months I went back to my GP who referred me for Physio. Probably attended physio over the next 6 months with absolutely no relief. My desk job was turning into a living nightmare every day.
Feb 2016: Referred to Warrington Hospital Orthopaedics who did do an MRI which showed nothing – to be honest I don't think it fully included my coccyx!. They (Ian Shackleford, see Doctors and specialists in the UK, Cheshire) finally agreed to do a steroid injection & manipulation (whilst under anaesthetic) which did help with sitting pain for about 2 – 3 months. I always felt like the team there did not take my pain seriously and had more important issues from other people to deal with… which was so upsetting and frustrating. I didn't return as the orthopaedic unit got shut down under investigation for some reason… my GP then referred me to another local(ish) hospital.
In between my next hospital appointment (such long wait-times on the NHS) I visited Dr Scott Middleton at Salford Chiropractic (see Doctors and specialists in the UK, Lancashire) and had two manipulations (OUCH!!) which were awful and did absolutely nothing to ease my pain.
Oct 2016: Had steroid injection (without anaesthetic) by Dr Wiles at Aintree University Hospital. Seemed to work for 2 – 3 months. I had this procedure by Dr Wiles 2 more times but of course only got temporary relief. I had these without anaesthetic – it was quite painful for a few seconds but would agree that anaesthetic would be overkill for this.
Oct 2017: I was getting so frustrated as nobody could really tell me the cause of my excruciating sitting pain and so I decided to do some more digging-around on this website and joined the 'Coccyx Pain Support Group' on Facebook (another valuable resource!). After reading recommendations I booked an appointment with Dr Maigne at Notre Dame Hospital, Paris (see Doctors and specialists in France) who gave me a sit-down x-ray AND DIAGNOSIS! Basically my coccyx was hyper-mobile and needed to come out. I took this recommendation to my GP and Dr Wiles at Aintree but unfortunately I found it very hard to find a surgeon who could/would perform the coccygectomy procedure. My GP dismissed this recommendation also which left me frustrated (yet again).
I did read on the facebook support group that you can get a referral from a private GP/surgeon to an NHS surgeon for coccygectomy. After finding a few recommendations for Matthew Ockendon at Sir Robert Jones Orthopaedic Hospital (see Doctors and specialists in the UK,Shropshire ) (approx. 1.5 hours drive from me), Oswestry, I made an appointment with Claire Morgan Orthopaedic Surgeon at Spire Warrington for a consultation.
May 2018: Claire Morgan recommended a coccygectomy and also gave me an indicative fee to have it done privately under her which I unfortunately could not afford. She kindly wrote a recommendation to my GP and Matthew Ockendon for coccygectomy. After chasing my GP numerous times I was finally on the waiting list to see Matthew Ockendon (so exciting!).
Oct 2018: Matthew agreed that my coccyx needed to come out and that he was happy to do the procedure (although highlighted the many risks). BUT at this stage I truly felt like the pain was ruining my life – being unable to sit down impacts on your everyday activities tremendously and is immensely depressing. I was so excited to join his waiting list!
May 2019: Finally! Had the coccygectomy… seemed to heal fine and I was back to my desk-job after 8 weeks. It was quite difficult to manage the first couple of weeks after surgery due to having 3 kiddies but my family were a great help (when hubby was at work!).
Feb 2020: 9-months post-op and I feel fabulous! It does get a little bit achy if I sit on particular seats (like the train) for say over 30 mins but all-in-all I feel 90% better. I still have a cushion for work as I am sat down for around 8-hours a day.
If anyone is in agony and you feel that it's really debilitating then I would 100% recommend removal, and 100% recommend Matthew Ockendon and the Sir Robert Jones Orthopaedic Hospital.
I hope my experience helps – I have found the whole process so very frustrating in terms of trying to find treatment and answers through the NHS – I guess without Jon's excellent resources page and the Facebook group I wouldn't have had a clue where to go or what to do next and would probably be stuck with the feeling of sitting on a hot knife every time I sat down, and for the rest of my life!
If anybody has any queries, please don't hesitate to get in touch by email.