Endometriosis UK

What now?

4 years ago I had a lap and the result in the hospital was that I had endometriosis but not enough to remove and "this couldn't be causing my pain". A few weeks later my reg gp said that the consultant was wrong and you can have the smallest spots but terrible pain. Then that was the end of that, they went down the ibs root ( which was made worse with the air from the lap). I had a colonoscopy only a short way inside and they found nothing. 4 years later I now have chronic diarrhea everyday and still pain. i have asked for a full colonoscopy but have not yet been put on waiting list.

Why was the endometriosis subject just brushed away?

What to do now?

Just feel I haven't been taken seriously for years and finding it hard to have a career and fun whilst always in pain and on the toilet!

2 Replies

Maybe they don't know what to do hun. Alot of hospitals claim to have endo specialist but they have no idea what to do with you. I've had the same problem with my local hospital. If you Google endometriosis accredited centre that will give a list of all the centres in the UK that have specialist that will be able to help. Find the one nearest to you and ask your gp to refer you. I live in blackpool and had to travel 2 hours to see a specialist in Macclesfield but it was so worth it. They should never dismiss your endo, you just need to see someone who knows what they are doing. Where do you live? Xx


I have similar problems as you, the cause for me is endo growing all over my rectal area. My understanding is that the irritation it causes when your pipes get bigger (trying not to be gross but it is one of those subjects) means you can't hold on to your stool and have to pass it immediately. I have had a sigmoidoscopy that showed nothing growing inside my rectum. It's just the endo on the outside. 4 years is a long time for it to grow but I don't think you need much to cause a problem, it is a case of where it is. And it is true, you can be totally covered in endo and have no clue or have a tiny patch and be in agony, you are not insane :) it's very painful. I have had no help to manage it. I'm hoping they'll remove it when I have my hysterectomy. You have to have a gynae and a rectal surgeon to perform the surgery so it's not an easy one to get. One doctor did give my fybogel to bulk my stool but I'm too scared to try it. Sorry I don't know what to do but I feel your pain and understand :) best wishes xxx


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