Nurse who suffers chronic tailbone pain

My photo
I am a Registered Nurse who has suffered with tailbone pain for over 8 years. Like all chronic pain, it is essential that sufferers get the correct support, diagnosis and treatment appropriate for them as an individual. This blog follows my journey with chronic pain, it expresses my personal opinions and thoughts. It is not intended as a replacement for advice or treatment from your normal Healthcare Provider.

Thursday, 12 February 2015

At a loss- other causes of coccydynia

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.

No comments:

Post a Comment