Hi my name is Sara and I have been suffering from Coccydinia for approx 3 years. Having suffered from back problems for many years but localised to my neck, mainly stiffness caused by stress. When the pain of headaches and sickness feeling from the dizziness was so bad that I had to take time off work, I would go and see my local chiropractor for help. In October 2006, shortly after starting a new job, I was rushed to hospital with suspected viral meningitis. The ambulance staffs was great and upon arriving at the hospital in the evening I was seen by a very young doctor who confirmed that he would need to perform a lumbar punch to run tests to confirm that the problem was indeed viral meningitis. He disappeared for 20 minutes, returned reeking of cigarettes and announced he had never done this procedure before so he has been reading up on it. Sadly, the first attempt hit a nerve, the second hit another, the third the same and by the sixth attempt I could not take anymore. I was transferred to Battle Hospital and told that the following day the procedure would need to be performed by radiology.
It was not until I left hospital that I noticed lower backache from standing at the bus stop, walking around for half an hour or so and sitting in certain positions. This was then accompanied by muscle spasms when I went to the loo, sharp knife stabbing sensations that lasted some 20 minutes and were worse when I sat down, the pain was excruciating. After many months I went to my doctor who referred me privately to a surgeon at the Nuffield in Oxford who told me that I needed and MRI scan and he performed an internal examination. The internal was normal. The MRI I was told was normal. At the same time I noticed that sitting down for long periods was becoming very painful, even more so standing up straight from a sitting position, so I commented on this when I went back to the surgeon. He confirmed that I had Proctalgia fugax not to worry and to take Amitriptyline if I wanted.
The pain in my lower back became a daily problem, when it was unbearable I went back to my chiropractor who was interested that I had no more neck problems and that the pain had shifted to my lower back. He told me that I had a twisted pelvis and as I had just sold my trusty Landrover for a smaller run around which I did bend and swivel to sit into I thought that sounded like a sensible suggestion. I had x-rays taken, I was told that I was definitely suffering from a twisted pelvis because the x-rays showed that one hip was higher than the other, I was given a heel lift, a back Velcro brace and told that when I sit down (90% of my day) to do so with the right buttock cheek on a book of about half an inch thick. Having just started a new job that involved travel by car, train, tube and walking for 2 hours each way, the pain just did not get better. I sat on my trusty magazine, buttock lifted but the pain steadily got worse. The carrying of heavy paperwork, running for trains, long periods standing, long periods sitting on hard seats, legs bent one way and so on just did not help the situation. Until one day I ran to get on the train, sat down and immediately had such a bad attack of what I thought was Proctalgia Fugax I really thought I was going to pass out or worse than that not be able to get to the toilet. I called the doctors surgery and with an appointment some 4 weeks later I explained that the pain was coming from my pelvic region but lower and my doctor again referred me to another surgeon at the Nuffield. This time, I was with the surgeon for 5 minutes, although he was 15 minutes late so 20 in total. He announced that he only specialised in knees and thought I should have another MRI and he would refer me to another surgeon called Mr Gavin Bowden at the Nuffield.
I first saw Mr Bowden in Feb 2009. He immediately diagnosed me with coccydinia. He told me that I needed to have an outpatient treatment which involved a manipulation of the coccyx along with steroid injections. Following that I needed to attend the Real Health Clinic in Coventry to address the lower mechanical back pain. At this point in time my quality of life was virtually zero. I could not sit for long, could not stand for long, was taking copious amounts of painkillers, which in turn had then given me raging heartburn. My dog was lucky to get a daily walk and I was becoming reliant on my Mum to help me with household chores. I was no longer able to garden, put out the bins, drive for long periods and my weight had increased by 3 stone.
I notified my employer at that time about the time off for the manipulation and injections, who knew that I was suffering and had been for some time. All was well or so I thought. I had the operation at the beginning of February but unlike the stories and articles read, I was not able to go back to work the following day, in fact I felt no relief at all and so needed to be signed off work. During the beginning of that 2 week sickness period my husband of 13 years told me was leaving me, several days later my employer called to tell me that I had been made redundant, back dated to the first day of sickness. I then had to call the Real Health Clinic to tell them that I would not be able to attend as I was in a difficult situation and needed to find another job very quickly. Although the pain when I sat down had completely disappeared after a month or so, the lower back pain was worse than ever and I began to spend days in bed. The pain got so bad that I returned to Mr Bowden and I asked for help. He told me that I had to go to the Real Health Clinic. I managed to arrange this through my insurers and having just spent a week in bed through back pain, an appointment came through for a 1 day assessment with the head physiotherapist. The report confirmed that I was disabled, had poor quality of life and suggested that I should attend a 2 week residential course the following Monday. It was daunting to know that I would be with 3 other strangers attending a course on pain management in the middle of no-where. The course comprised of classroom sessions, teaching about pain, pain management, thought process, the spine, and spine functions. Then there were exercise programmes in the hotel pool twice daily, gym circuit training every day, a mile walk and so on. It was a fantastic course, the staff who were all medical experts were absolutely wonderful and the course was extremely useful. At the end of June I returned home, feeling better than I had in a year, positive and looking forward to getting on with my life.
I started looking for work straight away, and it became apparent that so were 200 other people for each job I applied for. After another month went by I had to face the fact that my redundancy money was virtually gone and that I was going to have to sell my home or rent it out and move back to my parents. The Real Health Clinic had confirmed that I would need to change my lifestyle to cope with my back pain, this would mean looking at work nearer to home with less travelling time. By the beginning of August I made the decision to let my home in an attempt to try to keep it. This meant that the whole house needed to be decorated, a garden needed to be dealt with and it would need general sprucing up in order to get more money than I paid for on my mortgage. This process was even harder for me as I was alone. My Mum came over to help. 3 weeks in and my back problems returned. I sat outside on my lawn grooming my dog, I turned to get up and felt the dreaded coccyx pain. For the next few weeks, the tell tale signs returned, sitting down became a problem, the pain when getting up, pain in bed lying down and the lower back pain was excruciating. My Mum carried on with my Dad and the house was finally ready. I went back to Mr Bowden who referred me as an outpatient to a radiologist at the Nuffield for further injections under x-ray. Several days after the operation and the pain had not subsided at all. I called to explain and was told to wait for 2 weeks, complete my pain management diary, post this to the Radiologist and then go back to Mr Bowden. Another month or so passed. Finally I met with Mr Bowden to explain that the injections had not made any difference at all this time. I was told that I needed to go through the same initial process again. I called and booked this for the following Wednesday 2nd December. I was relieved and pleased that the pain would be gone for Christmas. 2 Days later the pain was worse than ever. The third day no change or the fourth by the fifth I called Mr Bowden and the decision was made to proceed with a coccygectomy on the 16th December.
I had to let my home for a year and I have moved back to my parents, I am unable to bend, lift or bath on my own, My weight has increased by another ¾ of a stone and my pain medication no longer helps. I have bought a Tens machine with heated pads which I have found really helps with the pain when it is more than I can bear.
I have read all of the stories on this website and they have given me hope that I may be lucky enough to be one of the % of patients that has no complications and has a complete recovery with no more pain. I long to walk my dog on the Ridgeway and exercise, lose weight and get a job but most of all, I hope that I will be in a position to be able to afford to move back to my house in a year's time.
Once the operation has taken place I plan to write about my experiences in an effort to help others recognise early signs of coccydinia and hopefully fingers crossed the pros of having a coccygectomy when life just doesn't seem worth living anymore.