is it Endo or something else?

Hi Ladies, I am hoping you will be more helpful than my gynae and doctors!

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

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  • Sorry you've had so much trouble and been in so much pain. Your story sounds similar to mine. I am due to have a hysterectomy in February for adenomyosis. Have they suggested that it might be this? I've just finished a course of Zoldex and this really worked. Best of luck and hope you get some answers soon x

  • Thank you Worzel for your reply! Not one gynae or doctor has mentioned adenomyosis but having read up on it on here it would explain why they might not have found anything last time and my general symptoms, so not sure why they haven't suggested it! I think that is my biggest problem the gynaes etc just always sound so vague and evasive! So will def ask them next time about it, and hopefully in the meantime zoladex will help with the pain. I hope ur hysterectomy goes smoothly and helps your pains! X