I am in pain every hour of every day

Frances, Ireland - proinseas1@gmail.com

Posted 2016-03-13

Hi everyone. I am so glad I have come across this website as I was starting to think I was the only person with this problem. Unfortunately my difficulties are ongoing.

I fell playing football when I was about 11 years old. My foot skimmed over the top of the ball and I fell flat onto concrete. I am almost 30 and cannot remember a time when I have been able to sit properly. I am in pain every hour of every day. I can't sit on a chair straight for more than about 20 seconds without having to move from side to side. I wake up at night and can barely feel my legs if I've rolled into my back. I have to lift myself up with my arms and it is agony. More recently, I have had a few episodes of what I can only explain as feeling like something is 'stuck' or trapped; perhaps a nerve or one if the bones. It happens when I have stood up quickly after sitting awkwardly. My body collapses and I can only stand again after something 'cracks.' I have been wailing in agony each time.

I went to a physiotherapist in 2014 who after feeling the protrusion from my tailbone refused to touch me and told me to go to my GP. I did so and my GP said I would not be able to give birth or carry children due to the pressure. He suggested additional bone had formed around an original break, over time. He could feel the significant protrusion at my tailbone. It is like a spike of bone which sticks out. He referred me for an x ray.

I went for the X-ray and was informed upon arrival that they 'don't X-ray that part of the body on a female' and that I had to go back and request a referral for a scan.

My GP then referred me to rheumatology, thinking this would be the quickest route. Unfortunately he was wrong and despite phoning numerous times in tears, I waited 18 months for my first appt. when it finally came the consultant agreed she could feel a protrusion and observed me sitting on one side. She ordered an MRI from a specialist musculoskeletal team. Despite it being urgent, I waited another 15 weeks.

I finally received my results in the post two days ago, which frankly was a pile of medical jargon. I asked two friends who are doctors to translate. The scan suggests that I have '90 degree angulation between the 1st and 2nd segments with other segments being orientated anteriorly'. Apparently, this is 'within normal limits.' I burst out crying when I read the letter. My tailbone sticks out so much it almost breaks my skin. I can't sit, lie down or stand up half the time, and apparently this is normal. If so, I absolutely do not understand medicine.

I also tried to suggest to the radiologist that when sitting up, my protrusion is significantly worse than when lying flat, which is how I had to lie in the MRI scanner. The position changes significantly and the scan doesn't represent what I have to live with. Has anyone had this same issue?

I am currently being referred to a pain consultant who I know will offer me injections which I absolutely know won't help me. The rheumatologist told me she had never heard of a coccyx removal. I feel beyond frustrated, hopeless and as though I am being fobbed off as this is such a rare injury. I don't know how I can manage this for the rest of my life and just want someone to help me. I am taking some reassurance that other people have had this same experience!

Update, 2017-06-11

I have been waiting to see a pain management doctor since February 2016 with no appt as of yet. Around October 2016 I decided I'd had enough (after several meltdowns and having initially begun this process in May 2014) and I paid 200 to see a private orthopaedic surgeon. He assured me that I had options and suggested we start with a steroid injection under anaesthetic so he could investigate the issue. Prior to this I ended up in a&e before Christmas with loss of sensation in my left leg and extreme pain down my left hand side. The doctor suggested a trapped nerve which is related to me continually sitting on one side. I was prescribed amitriptyline which made me very drowsy and unwell.

I finally had my steroid injection in Feb 2017 on the NHS. The procedure itself was fine but I was in a huge amount of pain for a fortnight after. Unfortunately as expected it lessened some of the acute pain but I have had ongoing issues. I have had a number of episodes after I stand up quickly where it feels as though a nerve or a bone is being caught and it is agonising. I can't stand straight and it takes quite some time to manoeuvre in a way which settles the bones in my coccyx, which essentially feel like they're dislocating. There is a very loud crack which feels like bones in my coccyx realigning. No-one has been able to explain to me what this is.

I had my review today and was finally shown the images from my mri. My tailbone is severely angulated at a 90 degree angle inwards. The consultant suggested a coccygectomy may be my only resort but warned me of limited success of this procedure.

I am glad to have made progress but this has been a long road and I continue to suffer with this condition. I hope surgery gives me some relief!

Will update after procedure.

Frances

Note from Jon Miles:

I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.

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