Anonymous - firstname.lastname@example.org
I have been dealing with coccydynia for a year. After endless search and unable to find an experienced doctor, I decided to travel long distance to get a proper diagnosis.
Firstly, PLEASE, PLEASE get a SEATED X RAY in your home country if it is available before you allow anyone to treat you. It is the only way you can help yourself and to know the cause of your pain.
I searched on coccyx.org and after reading positive reviews about Sayer clinics, I took a long distance flight to London to see Michael Durtnall and his team at Sayer clinics after reading positive reviews (see Doctors and specialists in the UK, London).
However, I was surprised and disappointed to know that even Michael DOES NOT do SEATED X-RAY even when I requested for it. It was all my fault, I took it for granted that it is a protocol as this should be the first step reveal the cause of the pain upon sitting. However, I decided to go ahead with the treatment as he is well known to treat coccyx pain.
Just from the standing x ray, Michael diagnosed me with coccydynia. I was told that I have dislocated my coccyx and it was also slightly bent backwards and not curling under. The treatment includes internal/external manipulation and I was told that the recovery will take about 6 months to a year.
I was also told that I have tight pelvic floor and was referred to his physiotherapists. Prior to the treatment, I had NO PELVIC nor PERINEAL PAIN at all. Just pain in the coccyx upon sitting. I had treatment everyday for weeks (Mon-Fri) I questioned on the intensity of continuous manipulation but was told it was ok as I will only be there a short period.
After coming back from London for months, I felt that I was not improving at all and things seems to be getting worse. Getting a new condition altogether. I started getting weird sensation in my genital area. "Toothache" and stabbing pain in the labia occasionally. I also felt there was a foreign object in my rectum, something like a golfball. I ignored it as it went away on its on after a while.
As my coccyx pain was not getting any better. I continued my search on coccyx.org and finally went to Paris to see Dr Maigne (see Doctors and specialists in France) for a diagnosis after I chanced upon fellow sufferer, James's blog. (A strange old tail)
From the dynamic x ray, It was obvious that there wasn't much movement in the coccyx upon sitting. The coccyx was rigid and there was a spur at the tip of the it!! Finally a diagnosis for me!! I was given a guided injection to see the effect of the results. It was positive as I had pain reduction. nevertheless, I was ready to go for surgery as soon as the effect of the jab wears off as I wanted so much to get my life back!! I would like to add that Dr Maigne was extremely compassionate and kind. He really empathised with coccyx sufferers.
However I was very, very unlucky, the perineal pain seemed to be getting worse and I had a full flare up a month ago with severe, severe burning pain from my genitals to rectum. It was a horrible pain and totally intolerable!! Coccydynia is already giving me hell and now this... I started my search on the new condition and it's pudendal neuralgia.
I can only recall that it after manipulations and pelvic floor treatment. Coccydynia is already giving me hell and now this new condition which is very rare and difficult to treat.
Michael and his team might have helped others to heal. I'm not too sure what went wrong. Probably, the daily continuous internal/external manipulation had injured the nerves or whatever. Anyway, no amount of manipulation is going to help as the coccyx was rigid and there was a spur at the end.
I'm now much worse than before with a another rare condition. I'm very depressed and I guess my life is over. If I had read James's blog before going to London, things would have been different.... I'm totally lost now... No one can help...
The purpose of me taking time to write is to ensure that no one had to go through what I went through and I spent a lot of money for my weeks of treatment in London. I hope everyone here take my advice seriously as there will be no turning back.
One last advice to anyone not able to find a good doctor in their home country. Please go to see Dr Maigne in Paris FIRST at least for a diagnosis. It will save you a lot of time and money even if it means travelling long distance.
I hope someone will benefit from my post.
Respoonse from Michael Durtnall:
We DO take sitting x-rays when necessary. We xray our new patients standing but also manually assess the mobility of the pelvic and coccyx joints. This combined input of information is far more than is available from simply comparing static standing and sitting x-rays.
Many new patients also consult us for coccyx pain plus referred pelvic pain. In particular, when they have a spicule or an immobile and straight coccyx, they sit assymmetrically to avoid sitting on the inflamed and exquisitely painful tip. So they all sit sideways over weeks, months and years which compresses the pudendal nerve between the coccyx and the sitting bone, usually more on the left side if they are right handed - but often both sides as they alternate their sideways-sitting.
Many patients arrive at the first consultation with the feeling of a golf ball up their bottom, perineal pain, pelvic floor pain, vulval or deep vaginal pain, bladder pain, clitoral insensitivity with anorgasmia or heightened sensitivity (PGAD), inner thigh or lower abdominal pain. Men often also present with long-term testicular and penile referred pain from the compression of pudendal and pelvic nerves.
We are uniquely successful in manual treatment of pelvic pain because of our neuromusculoskeletal approach and combination of manipulation with expert manual pelvic physiotherapy.
Please read the review next to this one by Nicolas. He had an extremely straight, stiff coccyx which was very close to fusing but if he had given up and stopped treatment at any point up until resolution he would have firmly concluded that it was not going to be successful ... but he continued the treatment and we finally regained mobility of the top coccyx joint thereby relieving the pressure on the tip. A great result where patience paid off!!!
Unfortunately, there are few, if any, experts in the world who x-ray and expertly manipulate the coccyx and treat pelvic pain with our experience and success but I will keep on teaching students at chiropractic and osteopathic colleges and seminars.
This lady may have had to be referred for surgery. Our statistical results show that 73% of our patients achieve 70-100% improvement over an average of 6.8 treatments, which means that a few cannot be helped. In general the patients who do best are those who can visit us routinely for treatment and are positively motivated to do our prescribed and specific exercises.
I have tried to contact this anonymous patient on the given email address to offer help but so far without response. Please email me at email@example.com so that I can advise and help.