Endometriosis UK

Endo or something else?

Hi Ladies, I am hoping you will be more helpful than my gynae and doctors! I posted this on the post Wall as not sure if posts and questions are linked, so apologies if they are and u'r reading this twice!

About 3/4 years ago I started getting Endo symptoms really bad, was in constant abdominal pain where my organs felts like they were being twisted, stabbed and ripped apart I could barely walk , sex became painful- not so much during but after I was in worse pain for about 24-48hrs after. From reading a lot of posts I was lucky and had a doctor who put my forward for a laparoscopy at my local hospital and they found and removed some Endo. I was ok for a month and then the pain came back...my gynae at the time said to just get on with it and that's just life! Being only 24yrs at the time I refused to believe this and did some research and referred myself to another an endo specialist hospital and got another Lap done to remove the rest of the endo and all was well and I was pain free again.....

But, a year and a half later, Nov 12 the symptoms returned as bad as ever, so again they put me forward for a Lap (Feb 13), but they did not find any Endo this time or anything else and the weirdest part of it all was that after the op I was no longer in pain. I quizzed both my doctor and gynae and they did not know what it meant and they did not pursue it further, which seemed silly to me

So in October I started getting pain again but slightly different, in the past I have had pain across both side of the abdomen area this time it is just on my right, still same sensations as before. The pain seems to get worse as when my bladder feels full and empties. Still painful with sex and again the more I move around the more worn out I feel and in pain I am. I went back to my doctor asking her to start from the beginning and not assume that it is Endo since they found nothing last time but both the doctor and gynae are working on this assumption! the doctor did an internal scan and there are no cysts or anything on the ovaries.

I have said I do not want a fourth op when they have yet to convince me it is definitely endo so they are wanting me to go on Zoladex for 3 months and see if this help relieve the symptoms. But I wondered from your experiences if this does sound like Endo? And if you guys have any suggestions or experiences of them not finding Endo like mine?

Any help and advice would be very much appreciated! x x

2 Replies

Hi I had two laps where nothing was found (first 2 laps, endo was confirmed and

lasered ) but I knew my body and kept fighting, seeing Consultant after Gyny after Dr, eventually I found a consultant with a lot of experience in endo, and he thought I had adenymiosis, similar to endo in symptoms and nature of growth but this lives inside the cells, so is unable to be seen.

I am unsure if treatments for endo and adeno are the same as I had an immediate hysterectomy but I do know that all treatments for either are just trial and error until you find one that suits. I sincerely hope you can get to the bottom of this and become pain free x


Wow...this sounds exactly what I have experienced. I have gone through the same things and am currently off work with severe pain in my right side. I was admitted to hospital last week it was so bad. Went to gynae on monday and he is saying it isn't endo as on zoladex which isn't stopping pain. It is so frustrating. I am just waiting for an MRI scan to see what to do next. I am so frustrated with it all. Nobody seems willing to listen. I am still convinced its endo but don't know what to do. I hope you get somewhere


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