Coccyx pain and blog

Jill, UK -

Posted 2014-11-09

I have suffered with coccydenia for about 5 years now. I have tried manipulation under anaesthetic (MUA), steroid injections, seen a chiropractor and a physio. Painkillers don't touch it.

The first MUA and steroid injection worked, three since have not. One of these I paid for privately out of sheer desperation at over 2,000.

The chiropractor tried internal manipulation also...(not nice!).....but I did not see any real improvement after about five sessions. As this was an expensive chiropractor in London, and as I also had to pay for a train to and from London I had to stop going.

A pain consultant tried steroid injection with ultrasound guidance to get to the right spot. This has not helped either. Again paid for privately. He is now suggesting an 'impar nerve block'. He feels manipulation is not the way to go as the coccyx is meant to be mobile.

A trauma and orthopaedic surgeon is suggesting I try another MUA with steroid injection. He feels impar nerve block will not help. He also feels a coccygectomy may be my only hope: not a path I'm ready to travel!!

Thanks to contact with fellow sufferer- the boxer Audley Harrison, I am now going to try a physiotherapist who deals with coccydenia. She is a women's health physio. Apparently she treats pressure points. Audley has also suffered with tailbone pain, and found a physiotherapist in America that helped him. Physio to date has been a waste of time as I was simply given exercises to do and have not received any specific treatment.

I am incredibly frustrated that this condition is so poorly understood. It is not back pain as such. It is coccyx pain, entirely different. No one can agree how best to treat it, they can't even agree how to spell coccydenia/coccydynia/coccydaenia!

It affects every aspect of my life. After a hard day at work all I want to do is sit down in comfort, and it's the one thing I cannot do. I cannot travel any distance. I cannot sit through a long film at the cinema. I cannot sit comfortably at work. I cannot sit at the dentist or hairdressers etc.

So I am starting to blog to share my experience and that of fellow sufferers -

Chronic pain is no fun at all.

Update, 2015-02-15

I am at a bit of a loss really.

The physio I was seeing (and still will once recovered) told me that in her opinion my coccyx was not now the problem. It made sense, as this pain has been going on for 5-7 years, and I understood why this would cause my muscles to overcompensate, be oversensitive to pain and go into spasm. They have spent a very long time trying to help my body cope with my original coccyx injury. They have done this by tensing and pulling everything out of it's correct position. Obviously because the original injury meant I could not sit on my coccyx at all, I would alternate either buttock cheek, and sit in very awkward twisted positions.

I have seen a definite improvement in my muscles. There are no hard, fibrosed, knotty areas any more. The areas feel soft and loose externally. Massage has definitely helped.

But the pain has remained to some extent, although it varies daily. So I added to the mix my mirena coil. I had read a couple (several actually) of comments from women who felt that this was responsible for their pain, and had it removed. There seem to be a few litigation cases in the States at the moment around the mirena coil as well. So I figured I had nothing to loose by getting this removed.

Add to this the fact I was told I had an ovarian cyst on the side where my coccyx pain is worse, and was told this may be contributing to my coccydynia. It is well documented that if ovarian cysts press on nearby structures it can cause pain.

Well, the coil and cyst have now gone. The pain remains.

Post surgery I have now also been told that I have pelvic varices and a distended colon. Both were 'significant findings'. My surgeon has told me that these pelvic varices can present with a dull aching, sometimes sharp pain, usually worse on one side- like mine is. They can also cause low back ache. Any activity that increases venous pressure can apparently exacerbate these symptoms- such as sitting. He described it as chronic pain that is unresponsive to conventional treatment. All of this ties in with my coccydynia.

Then I have to consider my distended bowel. This, I was told is so large and dilated that it is resting on my coccyx, and the surgeon is in no doubt, also contributing to my coccydynia. It stands to reason therefore that this will aggravate my pain, especially if I become constipated.

Depressingly, the gynaecological surgeon has told me that there is nothing he can do for the pelvic varices. He says a bowel specialist may be able to help in regard to my distended bowel, but feels it is unlikely. With this in mind, I am not sure if my physio has probably done all she can do under the circumstances.

It is looking more and more like this pain is something I am going to have to live with now. I am not sure where to turn to next, or what to do. I am at a loss. One thing this has shown me is that coccydynia is not straightforward. It is not always a simple case of 'just' the coccyx causing pain. No wonder GP's groan with coccydynia patients, no wonder it is 'notoriously hard to treat'. Getting a diagnosis is hard enough, getting successful treatment harder let me rephrase that- IMPOSSIBLE.

I would advise anyone- make sure you get a definitive diagnosis before you follow any course of treatment. Be sure what you are dealing with.

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