Endometriosis UK

Recurring endo?

Hi, I don't know if anyone can help? I'm new to the group and it's really nice to talk to people that know what your going through!

I had a laparoscopy 2 years ago in February to diagnose and remove endo after being misdiagnosed for about 4 years (I also have PCOS).

The problem is I don't feel I was given any information or help on the illness. They found endo and they removed it but they didn't tell me where it was, what grade it was, what method they used to remove it or anything. My consultant had even lost my file when I went back for my post op!

I was put on the pill to treat the symptoms but have changed to the injection which I get on with better but I'm starting to feel like the endo has come back. (Another thing I wasn't told could happen). When I had periods they were getting heavier, more painful and clotting. Always accompanied by diarrhoea and all the other lovely symptoms. I had constant pelvic pain and by the time I came to have my surgery I could no longer have sex as it was too painful. And now the pelvic pain and pain during sex has returned. Getting in to see my doctor is really difficult so I just wanted to see if anyone had any advice first? Is it even possible for endo to come back whilst on a contraceptive?

Thanks in advance

Jamie x

2 Replies

I'm so sorry you have received such crap treatment. It sounds like to have rectovaginal endo. The pill will not do anything to the endo, the only treatment for it is excision - cutting it out. If you go to bsge.org.uk/ec-BSGE-accredi... you can find specialist gynaecologists who are skilled enough to perform this. Good luck x

1 like

Thank you. I'm going for my Injection tomorrow so gonna try have a chat with the nurse. I was actually treated by a specialist in a private hospital but under the nhs, sounds really lucky but I definitely feel I didn't receive the same treatment as the paying patients even down to the room I was in! I was told by the nurse that it was the room they use for storage and had nurses continually coming in and out without any courtesy during my post op recovery!

But thanks for the link I will have a look now x


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