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Endometriosis UK
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What do you call this particular pain/sensation?

Hi. I have a particular element to my pain cocktail, which I am finding I can't explain to my consultant or to myself.. I have various pains as we all do: low down back pain, hip pain, nerve travelling pain in leg and back, uterine cramps, ovarian twisting, shooting pains, bellybutton shooting pains, burning ovarian pains.. but this I cant quite describe, which is probably the one that most distresses me and inhibits my every day:-

So it is a low down sickness pain, that feels heavy and makes my body feel like it doesnt belong to me. There is a bloating too.. I am lucky enough to have had a child years ago and the sensation is a bit like the very final stage of pregnancy, once the baby has engaged... but with the addition of a constant nausea that is at times intense. This is the pain that exhausts me and sickens me. I feel like if I could resolve this one, I could cope with the others, no matter how bad they get at times. Because this pain is present the whole time, the pain of it seems to have morphed and although it is there, when I try to locate it, I cant. It feels like its either a wide area, or my pain receptors have become oversensitised. Its how I would imagine a ghost limb might feel! It feels significant and yet I haven't been able to pinpoint it for my consultant. I think of it as my endometriosis and the other pains happen as a result of this.. it feels like the origin of it. Does this make any sense to anyone??!!

5 Replies

It's not a pain I have but wonder if you have been tested for Adenomyosis , Endo in the uterus lining?


I have an MRI scheduled for 23rd of this month to investigate the progression. I imagine they ll look for that but perhaps I should mention it to consultant. He seems focused on looking for damage inside bowel.. I can feel where the endo affects bowel and this is different. I guess I'll find out.. it just takes so long to get to this point, I dont want them to miss anything!

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How do they tests for that?


I'm afraid I don't know a great deal , just a bit as I was originally misdiagnosed in general gynae as having it but BSGE centre don't agree. I think maybe symptoms plus ultrasound and a biopsy but that's not always definitive. This is a good article.



There's a Facebook adeno group too where you can ask about the sensation of symptoms Vs Endo.

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Thanks, I'll look it up.


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