Endometriosis UK
34,719 members30,964 posts

Endo and adeno found during hysterectomy (its a long post)

This is going to be long sorry but any infor would be good! Was having all the classic symptoms of endoalong with a very low immune system and was getting very ill. Had various tests including ultrasound. This all started in around June this year, though I have had some of the symptoms for a good few years. Was all getting a bit much this year and was having to take time off work etc. After trying various hormone pills and various painkillers, I was at the end of my tether, my GP only wanted to give me the mirena coil. I refused the coil and had to push to see a gynea. Only after explaining that I have full private medical cover did I get to see gyne. First appointment with gynea ran through some of my symptoms and he thought the best thing would be a hysteroscopy and an endometrial ablation. Was told recovery was minimal, only other option would be hysterectomy. So had that done, hysteroscopy just found my uterus was enlarged. To cut long story the op made my symptoms worse and I bled constantly! Went back to gynea who said that only option was hysterectomy. I had to have a full abdominal due to enlarged uterus. Had op 1st october, follow up 6 week check was this week. Pathology showed cervix nothing remarkable (was worried as I have had pre cancerous cells removed before), fibroids the largest was the size of a tennis ball, endometriosis and adenomyosis. Now I know my gynea is no expert when it comes to endo, his opinion is that a hysterectomy is a cure! I know this is not the case with treating endo. What are the chances of it coming back, I have been told it can be as high as 90 percent if not all the endo has been removed. I have to say even though I am still recovering from the op I do feel better and a lot of my symptoms have gone. I no longer have back ache, I am not aneamic, obviously the bleeding has stopped, I no longer have that awful dragging feeling, legs stopped aching, the list goes on! I just don't want it to come back. I just want my life back. Thanls for reading and so sorry its so long. Has anyone else had a hysterectomy with endo? I am going to think and be very positive!!

3 Replies

Hi :)

It all depends on where the endo is, if he took your ovaries out and if he did then whether you take hrt or not. Endo is a nasty disease. I've been told I most likely have adeno too and they also found mild endo which hasnt grown back after 3 years (unless they missed it of course). If you've had your ovaries removed and do not take hrt then the endo wont likely grow back. Good luck x


Hi. I had a hysterectomy 6 yrs ago, but they left my ovaries behind as i was only 29. Three years later had to go back in as endo had regrown in the surgery site where my cervix would have been. In the intermittent years have been abso fine, no pain, back to normal etc... but now i'm waiting for more surgery as the growth has regrown, and the endo has attacked my bowel & bladder. so this op will remove my ovaries, the regrowth, partial bladder and bowel plus what ever else they find. So in answer to your questions, from what i have read and experienced there is a very good chance it will re-occur. My suggestion would be...you need to see an Endo specialist, a gyne that knows what he's taking about! and DO NOT be frightened to ask as many questions as you need to or stand strong for what you want/believe is right. Hope that helps you a little bit. xxxx


Forgot to add the one third portion of the viginal canal to that list for surgery too.... but i have to look at it as, ''well at least i'm not dying'' and they will get most of it out again. x

Things could be a hell of a lot worse. xx


You may also like...