BUTT what caused it?!

Gail - chocbullets@hotmail.com

Posted 2008-09-28

Hello from Brisbane, Australia. I'm a 44 year previously fit, healthy and active person. I've only been suffering for three months, butt that's a loooong time to me when the focus of my life is completely centred around a pain in the rear end.

I can't sit at all, I can't stand in one place for too long. Driving in the car is agony. The pain is virtually immediate. Those donut and coccyx cushions are completely useless for me. The toilet is wonderful (picture me sitting there working away on my laptop ;-D). I wake up in the morning completely pain free. I can also walk for ever, and no pain from sitting to standing or moving my body in any way, so I should count my blessings. It's just by the end of the day, I have ended up usually in tears and thinking of the view from the top of bridges!

If I hadn't come across this site, I'd be questioning my sanity by now. Isn't it so great to be diagnosed with coccydinia - a fancy term for a bunch of symptoms, but not necessarily identifying the cause behind this ridiculous condition?!!

Ultrasound, CT scans, X-rays (although I question whether they actually captured the coccyx) show nothing but a little osteo-arthritic degeneration of L5/S1 which is considered to be 'reasonably normal'. The inflammation at L5/S1 and S5/C1 showed up....yeah, SO what is causing it???!A highly-qualifed neurosurgeon looked at me (didn't even touch me) and said "it's not neural". When I asked him "what makes you so convinced it's not neural?", he replied "there's hardly any nerves down there". Bless you, Mr Walker. You are probably completely right that it's not neural, but I challenge your dismissal of the cauda equine, pudendal nerves et al and your complete dismissal of the coccygeal region simply because it's a bit of a mystery to the medical fraternity and the scans report 'inflammation'. Inflammation is not a cause - it's a symptom of something going wrong and the body attempting to repair/protect!

I would like to share some of my therapies which do appear to be helping (not sure if this is a sign of recovery or simply better pain management - does it matter if it relieves some of the burning, dull ache and clenching tight rectal muscles?):

I haven't tried chiropractic manipulations etc YET, as I fear if it isn't a dislocation or misalignment, it could do more damage than good. I guess I'll try an orthopedic specialist in time but maybe they will simply want to go for the scalpel solution -if it isn't the tailbone exactly causing the problem, oh dear - surgery may just end up confirming it was not the root of the cause!

I'm kinda thinking that by the time I spend a small fortune in seeking help/diagnosis (but we service our cars, don't we, why not our bodies?!), and exhausted my efforts in searching for a sympathetic and truly knowledgeable specialist, nature will simply take its course and time shall be the ultimate cure.

Well, that's my journey so far. I'd love to receive emails from fellow sufferers (and particularly anyone in Brisbane/Qld who has discovered decent specialists in this field). My hat off to all those long-term, frustrated coccydiniasts - you truly deserve medals. When others can't see your pain and you are otherwise healthy, they think you are simply being neurotic. You are NOT imagining this. Crikey, why would you??!

Cheers

Gail

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