Suffering from coccyx pain for over 3 years

Ruth - ruth.mcilwaine@blueyonder.co.UK

Posted 2008-07-20

My name is Ruth and I am 28 years old. I have been suffering from coccyx pain for over 3 years now. It all started in June 2005 when I was only 25 years old. It started all of a sudden and for no reason that I now of. I was referred for an MRI straight away as I also get pins and needles down my buttocks and both legs into my feet.

I saw a neurologist who checked my MRI and said that I had unusual ware and tare in L4 and L5 of my spine but that this was not some thing that they could operate on and it should not be causing the amount of pain I was suffering. They then went on to do a brain MRI and found I had one and it was fine. I was put on lots of pain killers and anti-inflamtiories:

I remember saying to them that it felt that I was wearing a nappy of pain as the pain was between my legs all the way around the back as well as across both hips. They ignored this completely.

After 3 months I had to go back to work as was not getting paid any more. I work for a large energy supplier and they were great as I was unable to sit down they got me a sit/stand desk and a kneeling stool, I am still using both of these now without them I would have had to stop working a long time ago. If you work in an office I would strongly recommend them.

I was referred to a physiotherapist who tried acupuncture when the exercises were not working. The physiotherapist did find out that all of my joints are hyper mobile and she thought that this was part of the problem. She suggested that I saw that I see some one who dealt with arthritis as she thought I had arthritis in my hips (she was half listening to the "wearing a nappy of pain"). I saw a rheumatologists and had an X-ray but was told that there was nothing wrong.

As they could find nothing wrong I was told that there was nothing that they could do and I was referred to see a pain clinic. I was given a tens machine and a relaxation CD but as I was getting on with my life and still working (part time now) I was told that they could not offer any thing else to me.

I returned to the doctors but was told that every avenue had been explored. I was told that I had to come to terms with the fact that I was going to have this level of pain and medication for the rest of my life (at 26 this left like a long time).

I only went to the doctors when I absolutely had to after this, to get more medication and for sick lines when the pain got so bad I was unable to work. This went on for another year (2 years on from the pain starting) I went to the doctors again as I have been on the Internet and found this web site. I told the doctor that I thought that the pain was coming from my coccyx and she laughed and asked were is it then. I pointed to it straight away I asked if she was able to arrange for me to have an pain killing injection into it and asked for sit/stand X-ray. She agreed that if I made another appointment she would examine it.

I managed to get another appointment with her 2 weeks later and she checked my coccyx the pain was out of this world. I nearly passed out with the pain but she said that as she could feel no gaps in the bone, there was no where to inject the pain killers. I became upset and was trying to explain that I was only 27 and did not want to live with this level of pain for the rest of my life I want to have more children (I have 1 she is 7). I was told that I could keep trying for a baby as this should not make any difference to my back and as I left she said she hope to see me in her anti natal clinic soon.

5 months later in the December my husband was seen by a Orthopaedic Surgeon for upper spine pain and I went with him. Once he had spoken to my husband he turned to me and asked if I had a problem with my coccyx. At last someone had asked me if I had a problem my coccyx. I advised that I thought so but that no one wanted to listen or help me. When he realised that I had been experiencing the pain for over 2 years he asked me to get my doctor to refer me to him.

By February of 2008 the pain had got so bad I was unable to walk the mile to work any more and we had to choose a supermarket that had mobility cars as with my coccyx cushion and sitting to one side this was the only was I am able to get around. We had to purchase a car so that I was able to get to work and collect my child from school on time.

In march 08 I when to see him. I had been in his consultation room for less that 15 min when he told me he was going to give an anesthetic straight away. He felt it first and told me that it moved around more that in it should. I have still not had any x-rays of my coccyx. The injection was the worst thing I have ever had done. I was sick straight after with the pain.

I was asked to go for a walk and for an hour and go back to him. After about 10 minutes I left the hospital I was able to walk further that I have done for a long time and even managed to go for coffee and sit down long enough to drink it. When I when back he was really pleased that it had worked. I asked how long it would last and he said it varied from a few days to a few months. I left his office and he asked me to make an appoint for 3 months later.

I woke up the next day feeling great, I got loads of house work done but by lunchtime the pain started and by tea time I was worse that before. I now have to use a crutch to walk and am taking more pain killers that ever before.

I saw the consultant again at the beginning of June (this was brought forward from the end of June) and due to the amount of pain I was suffering from he said that there was no point giving me another injection as in his experience if the first one does not work a second one will not. He seemed to think that my only option was to have my coccyx removed he gave me all of the pros and cons and explained that there is a 2/3 chance that it will work.

What option did I have live like this for the rest of my life or have a 2/3 chance of getting better. I am now on the waiting list and in Scotland the maximum time you can wait is 18 weeks so by the end of September I should have had the operation. I have been told to expect to be off work for about 3 months after and for the first month I will wish I had never had it done. Is it really this bad?

Anyway this takes me up to now. I am still managing to work although I have now been give a disable parking space at work so I don't have to walk as far. I am just waiting for a date. Although reading all of the story's on the site I am not sure if I am doing the right thing.

I must update my story after as hope fully it will work and the more good news stories on here the better. If any one wants to email me I would love to hear from you. It is so nice to know you are not alone as no one ever seems to have heard of coccyx pain before.

I would like to say one last thing if your doctor is not listening to you then go back every day if you have to until they listen. My consultant said that most doctors don't know much about coccyx pain so it is the last thing they think of if at all.

Sending good luck and pain free wishes to all

Ruth

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