Do you think this means it's returning?? - Endometriosis UK

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Do you think this means it's returning??

Andi1975 profile image
2 Replies

I had a partial Hysterectomy back in October last year and have been pretty much pain and symptom free since....

But a few weeks ago I began to have a few pains that reminded me of having a period and at the same time my bowel movements became quite loose! My doc wanted a sample as I previously picked up C-dif from a hospital but have just learnt that was negative which is obviously good news.

However as I had a lot of rectal vaginal Endo in the past, including nodules, and my peritoneum was completely hitched up overlying my rectum at the Hysterectomy (which unfortunately wasn't done by an Endo specialist) I'm now wondering whether these could be early warning signs of the Endo returning or perhaps not having all been excised properly. Especially as I have been feeling very fatigued again and a bit snappy (I'm not currently on HRT or any medication) so just thought I would ask about others experiences???

I know I need to start keeping a symptom diary (although not 100% sure how to go about it?) but as I would need a new referral to a specialist wondered whether I need to start the process now?

Many thanks and sending pain free wishes to everyone X

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alexander120 profile image
alexander120

Hi I am in pretty much the same position. I had total abdominal hysterectomy last October. I wasn't diagnosed with endo until then. They found endo adenomyosis and fibroids. My gyne was no endo expert as well and I know the endo was left. I kept ovaries which I now think was a mistake! I have been getting worse over the past few months. Looking back since October its been quite a gradual process. I now have most of the pains I had before minus the bleeding. I get stabbing stinging pain in abdomen, constantly tired and very bad aching legs. I have been to GP who diagnosed IBS and ordered blood tests. Bloods came back fine, tried meds for IBS which didn't help, I do get IBS symptoms. So back to see a different GP 2 weeks ago, she has promised to discuss it all with a few doctors and get back to me. As of today I am still waiting. Its so frustrating isn't it? I am going to push to try and find an endo specialist, I think its the only way to go. I would start the process now if I was you, I also wasn't sure but have got to the point where I am not coping very well. It all takes so long, I have Seen 2 GP's had a blood test and I am still no further forward. Good luck

Julie

Andi1975 profile image
Andi1975

Thanks Julie and sorry to hear your in the same position. I only kept 1 ovary in the hope of avoiding HRT as know I don't react well to Oestrogen although a blood test has already confirmed me as being peri-menopausal!

Interestingly though I found a site called HysterSisters which has some really interesting articles on Endo and implies that even if I had let them take both my ovaries then it probably still would of returned! Check them out:

hystersisters.com/vb2/artic...

Sending you pain free wishes and hoping we both get sorted soon X

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