Interesting piece of information. - Endometriosis UK

Endometriosis UK

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Interesting piece of information.

needingadvice profile image
6 Replies

I had a laporoscopy last year and was diagnosed with Endometriosis and pelvic congestion. For a few months now I have been feeling like the endometriosis has grown back, lower back pain, sharp stabbing pain in my right side irregular bleeding crampy bloated belly etc. I had been made to feel by my GP, my consultant, gyne at another hospital that indeed my endometriosis had grown back. When I went to see a new consultant who had been experienced for 22 years in endo and chronic pelvic pain, he told me that actually as well as having endo i have IBS and abdomino cutaneous nerve entrapment syndrome. It is a chronic pain, and if often misdiagnosed as something else but it is infact very common!

The symptoms are so similar to endometriosis, however there is a sign which is having pain AFTER bleeding, and persistent pain in one side. I was told endo pain is a menstrual pain (obviously worse for some people) but he explained it is like a contraction and it comes and goes, but having a trapped nerve is persistent and doesn't go away, and moving around a lot makes it hurt more. It can't be seen on a scan, and only doctors who know what they are looking for will be able to feel it! I was relieved when i was told this as it can be treated and cured, I have been told for over a year that my pain is all down to endometriosis and actually it was other things contributing!

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needingadvice
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Impatient profile image
Impatient

That would make a lot of sense to explain why some of the ladies on here are getting full time pains. Very interesting indeed, and thankyou for passing on the news to us non medical people.

xnet.kp.org/permanentejourn...

ACNES for short.

Something so simple could be causing people to be misdiagnosed and go through un-necessary surgery and treatments, because it won't be uppermost in a gynacology surgeons mind to check for it.

Very good to know about that.

Have added the website link to my collection of faves for endo/gynae pains.

needingadvice profile image
needingadvice

It was very interesting, it's so common but almost always gets misdiagnosed unless people are being seen by very experienced consultants! He explained it was in my abdominal wall, and the nerve is pushing through my muscle causing chronic pain in my pelvis, hips, and down my leg. He explained that people that have this get pain all the time, whether they are on their period or not, and endo isn't a sharp stabbing pain its a dull achey pain!

Impatient profile image
Impatient

He should try my endo pain. 'dull achey' indeed. I bet he'd soon change his description if he'd experienced it for himself.

agreed it is not sharp dagger pain of kidney stones for example but it's more than a dull ache. A dull ache i could put up with probably without pain meds at all.

needingadvice profile image
needingadvice

Haha, I don't think he meant it like it was just a little pain because he was very experienced and understanding. Obviously it's more intense in some women than others, but it's just he said the pain was a real achey dull pain from what i understood. Yeah, mine was a real sharp stabbing pain in my right side, and i'd get shooting pains in my hips and down into my leg, which was not endo pain!

Emmashead profile image
Emmashead

Very interesting but Endo pain is different for everyone, it isn't just achy pains, alot of us experience sharp stabbing, burning, throbbing pains and the list goes on, I only have Endo and I get all sorts of pain which is for sure down to the Endo x

sj_is_charmed profile image
sj_is_charmed

It's great that you have a diagnosis for which there is a cure and can completely relieve you of your pain.

I am not convinced by your consultants take on the Endo though. I have severe endometriosis characterised by recurrent endometriomas and yet I have no periods! My body grows endometrial tissue despite not bleeding out. And it takes two different types of hormone pills to even stop my period bleeds but still suffer the underlying menstrual cycle characterised by prostaglandin related symptoms. And yep you've got it! Despite no periods, I get pain. In women who get pain regularly it is likely the cause of adhesions that are twisting and pulling on organs that has occurred because of endometrial tissue shedding its monthly load.

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