Two years of painful procedures that haven't worked

Amanda -

Posted 2012-07-01

I am a 43 year old female, I live in West Oxfordshire, England. I've been suffering with chronic coccyx pain since May 2010 after competing in a gruelling off road duathlon.

I was a fit and healthy 41 year old, running 6 times a week, cycling 4-5 times a week, swimming, horse riding and generally enjoying life. I have my own business in South Oxfordshire, I was regularly unloading lorries with heavy sofas (I own a sofa shop) without thinking about it.

The pain started when I got into the bath to scrape the mud off after the above mentioned duathlon. The searing pain in my Coccyx made me feel sick. I assumed I must have banged my backside with my bike, but couldn't put a definite on any particular trauma to the tailbone.

I carried on as normal, still training like a mad thing, but the pain was getting so bad that I was unable to sit down at work, so I would spend my days standing (when surrounded by sofas that can be hard). Horse riding became really painful, so I cut my hours in the saddle down which was hard on my mental well being. I eventually went to see my GP at the end of August 2010 and was told I had IBS! I knew I didn't, so insisted on further tests and was eventually referred to a colorectal surgeon at the John Radcliffe Hospital (JR) in Oxford. He examined my 'tail end' and diagnosed me with a severe rectal prolapse. Running and cycling had to stop. He said that the reason I had such severe pain was because essentially my bowel was sitting in my rectum and putting pressure on my tail bone. I had lots of horrible tests to confirm the diagnosis and was told that it was so severe I needed urgent surgery. Unfortunately the NHS's idea of urgent was going to take about 8 months and I was feeling so unwell in addition to my pain, I had no choice but to go privately, and had a rectopexy operation in January 2011 with Mr Ian Lindsey at The Manor in Oxford. Incidentally he is the same colorectal surgeon that I was seeing at the JR.

After surgery I still very much had the presence of severe coccyx pain, so at my follow up in February I expressed my concerns to Mr Lindsey. He suggested I may have a Pudendal Nerve Entrapment, and said he knew how to do nerve blocks for this having recently been at a conference in Geneva and worked with Dr Bruno Roche. I was put on his NHS list for a nerve block, to cut a very long story short he did three nerve blocks between June and August; unguided by inserting a finger into my rectum and using a nerve stimulator to make the rectal muscles work, when he thought he found the right nerve he injected it with a cocktail of local anaesthetic and steroid. I had no change in the pain after any of the procedures although the first one paralysed me for 48 hours from the waist down on my right side, I had plenty of bruising and three general anaesthetics. In September 2011 he decided that he had mis-diagnosed me and suggested that I ask my GP to refer me to Dr John Outhwaite, a pain Dr at the Nuffield in Oxford. He referred me to another pain Dr (Mike Platt) at St Mary's hospital in London and a Urogynae consultant (Vik Khullar) also at St Mary's.

I was also referred for an MRI of the pelvis. The MRI came up with a lesion/tumour in my spine, about 1cm dia which the report said is indicative of a 'chondroid lesion'. I was told that this had no relevance to my problems and to forget it is there.

In December 2011 I met Vik Khullar who examined me and said that I had very severe pelvic floor spasms which he felt was causing my Coccyx to contort and curl under me. He put me on his list for Botox injections to the pelvic floor. Also in December I had sacral and coccygeal spinal blocks and a caudal epidural. The pain relief lasted me the train ride from Paddington to Reading, so about half an hour. I then had horrible flares for a couple of weeks until the pain went back down to base line. In February I had Botox injections into the pelvic floor, I was told it would take about 14 days for the pain relief to kick in. While I was under the general anaesthetic I had a cystoscopy (camera into the bladder). It was found that I have chronic cystitis. I had no pain relief from the Botox at all. When I had my follow up with Vik Khullar in March he found that the spasm had moved and this time he examined me rectally, he said that there was a band of muscle as big and hard as a thumb which he could feel was causing my coccyx to mis-align. Once again I was put on the list for Botox, this time he would inject rectally. He was also very concerned that the bladder issues could be causing the pelvic floor spasms. I saw Mike Platt also in March and he felt the next step for the coccyx pain would be radio frequency ablation, this is basically burning off the nerve endings of the coccyx with radio frequency at 80 degrees. It has to be done whilst the patient is awake for pain mapping purposes. This was done in April and I can honestly say it was like being tortured, he also gave me a shot of Botox into my butt. I had pain relief for about an hour and then it came back, this time though the pain was different, was less of a sickening pain, but still there. After about a month it was back to 'normal pain'. In May I had my next lot Botox and another cystoscopy. Once again I was diagnoses with chronic cystitis and told that the Botox would take a couple of weeks to kick in.

So, after 8 procedures and 6 general anaesthetics, to date I have had no relief from the pain. I now also have severe pelvic pain which I only started having after the Rectopexy operation in January 2011, up until then I didn't have any bladder issues. I am being told by the consultants that the bladder seems to be the culprit, however I had the coccyx pain before the bladder pain. I am currently waiting for my follow up with both consultants, I'm seeing them both w/c 13 August.I've been seeing a gynae physio at the JR who is really helpful with information, but a lot of the time she is unable to do any actual physio because my pain is too bad. I have had manipulation of my coccyx done rectally by her which is extremely uncomfortable and so far hasn't helped for much longer than the drive home.

I'm still working full time, no choices when you work for yourself. I no longer run or ride my beloved bike, but I do still horse ride by sitting forward in the saddle as much as I can, although I can't stay on board for too long but I think it's the only thing that's kept me sane over the last couple of years, horses are an amazing therapy. I gave up swimming when I was told I had PNE but have started again now and am trying to do more of that as and when the pain allows me to. I spend most of my non working hours laying on my bed (which is where I am typing this from), because the pain exhausts me, so by the time I have done a days work, walked my adorable Labrador, made dinner etc I am exhausted and cant stand anymore. Needless to say I don't sit down unless I have to, driving is unavoidable and I sit on a neck pillow which keeps my tail bone away from the seat. I speed eat or squat in my chair at the kitchen table at meal times.I'm taking Taginact 20 mg twice a day which is a slow release opiate, and clonazapam at night which is a muscle relaxant. I'm sorry this is such a rambly story but having found your site and reading so many things that I could relate to, and hearing of people that would actually understand the hell I feel I am in at the moment, I just had to get it off my chest!I am seeing John Outhwaite the week after Mike Platt and Vik Khullar, so will talk to him about Mr Wilson-Macdonald. I guess really need an accurate diagnosis to find out if it really is the bladder that is causing the problem. If this is the case then that needs addressing before anymore treatment can be done to help with the Coccyx pain. So far I just feel like I've had two years of painful procedures and that awful demoralising feeling you get when they don't work is so bad, I cant bear the thought of going through anything else without some proper guarantees.

Any advice or pointers would be great.

Thanks for listening!

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