I put off going to bed until I am utterly exhausted as I cannot lie down, sitting is equally painful and limits the distance I can travel. I have had so many nerve blocks and a denervation's that I have lost count. The GP prescribes Tramadol which does not help at all and I am on an anti inflammatory and 400mg of Pregabalin a day. I have pain in the sacroiliac area which goes through the body to the front groin area on the right and it is never under control.
This problem started when in South Africa on holiday about ten years ago as I needed an emergency hysterectomy, I woke up screaming and shaking in the recovery room in indescribable pain and was unable to stand upright for months afterwards, it was if my body had gone onto a spasm. Something happened to me during that operation, it has been put to me that I might have been dropped while unconscious. A gynaecologist checked me on my return to the UK and found nothing. I have had my hip checked and done so many physiotherapy exercises, tried a chiropractor and acupuncture and everything else you could think of, all a waste of time and money.
The picture is clouded as I had a spinal fusion twenty years ago, and although two top doctors I have see both said after MRIs that they can see no reason for the pain. But as yet nobody has been able to throw any light on this and it gets worse all the time.
I recently discovered this website and have spoken to Judy by email, I am now collecting my medical records and plan to go to France.
Having read many of your posts I wonder if any of you could recommend a woman's PT in the Cambridge/Lincs area, if so, I would be pleased to have their name.
I was very moved by your posts and in a sad way it has helped me to know I am not alone in screaming in silent agony.
Thank you
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rivercourt1
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Sorry for the pain you are in. Your pain sounds very similar to mine before last Christmas. I thought it was my SI joints I had MRI on both those & my lumber spine SI intact lumber spine compressed disc L4L5 L5S1 pressing on sciatic nerve. The nerve block & epidural steroid injections helped.
Some spinal operations give up the ghost after awhile and it looks like this could indeed be your lumber spine playing you up again.
It sounds like the pubic ring and entire pelvic bone structure is vulnerable during a hysterectomy as everything gets moved around that connects to it. And that's where your pain is (there is often pain going through the front with s.i. pain). You may have an unstable pelvis, s.i., and pubic ring. I think seeing a women's PT is a great idea. I dont live in the UK, but I believe there are a few PTs listed on pudendalhope.info. Hopefully she can see if your pelvis, s.i., and pubic symphasis need to be aligned and see if prolotherapy to tighten the supporting ligaments may help. She would also check your muscles for trigger points and your connective tissue for issues. Doctors don't seem to be very good when it comes to muscles/fascia/nerves around the pelvic area; womens PTs are much better.
Tramadol is weak. Can you ask for something stronger to get you by until you're fixed? Like nucynta or a stronger opiate?
Yes Nucynta works well for the pain but I felt a bit spacey on it. Maybe I should have stuck with it for longer. MRI next week and pain specialist has just diagnosed me with meralgia paraesthetica on the same side as my pelvic pain. Nothing has shown up on my previous MRIs.
The purpose of this website is to support not to give medical advice or diagnose without a license. “That’s where ur pain is”, u may have an unstable pelvis, SI and pubic ring” is diagnosing her.
U convincingly just gave her more things to worry about having.
I know ur intentions are to help. Please re boundaries.
"It sounds like" and "you may" is not an official diagnosis. And "[the sacroiliac] is where your pain is" was in reference to her saying that her pain is in her sacroiliac. I'm afraid you didn't read or comprehend correctly.
Offering possible ideas (especially when the offered has first-hand experience with the same pain symptims) is an integral part of "support." When I had my pelvic pain I was desperate for help like this. I always told myself that if I ever made progress or found something to control my pain that I would try to help others with what I learned or what worked for me. You may not be appreciative, but I know of dozens who are. Have a lovely day!
Hi, sorry to hear of your suffering for many years. I wish you all the best in France and hope you get some answers. Let us know how you get on ( if you want to that is. )
On the internet Look up neuropathic pain with autonomic dysfunction and see if these sound like what ur experiencing.
The autonomic dysfunctional w this type of pain fires up sympathetic component of the autonomic nervous system. The parasympathetic fibers calm things back down after stress or injury. Ev from feeling very cold n shaky n can’t get warm like u experienced in the recovery room, to decreased appetite, etc. It’s the fight or flight response in overdrive. That’s why meditation, neuro modulation, TENs units, relaxation etc are rec.
But if it’s neuropathic pain, neuralgia, central regional pain syndrome, etc these rec like that can n do bring in the parasympathetic nervous system but neuropathic pain which most doctors don’t understand needs understanding of the real prob. If u cd find a young neurologist!!!! Forget the old Crocchety set in their ways ones.
After 36 years of this pain I just met a young Neurologist last year who understood neuropathic pain w autonomic dysfunction. But he is in South Ogden, Utah in the US.
I have had pelvic pain for years which includes groin, pn, sacro and sciatica .
Anything can start it off from sitting to standing , walking, not walking enough to sex and also constipation!
Living nightmare!
I been in a&e with pain more time then i care to remember and i have just found the answer about 6-7 months ago, a women pt and a osteo at same time but it must b a osteo who knows how to treat groin.
I found out that i had alot of scar tissue in the stomach groin area and it was sticking and pulling which they sorted and unstuck. I also have the osteo to sort the sciatica and sacro.
Between all of it and a occasional sports massage i have gone from being of work and on so many painkillers to no painkillers back at work and reasonably comfortable!
So please do ur homework and try to get urself a good women health pt and osteo ( preferably again one that deal with groin injuries) which most do but some dont like to touch u there... i have a lady
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