Endometriosis UK
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A little advice please

Hi everyone,

I just wanted some advice really and some thoughts from other sufferers of Endometriosis. Over the years I have been suffering from really painful periods which got progressively worse, then extreme pelvic pain and upset bowel. About 4 months ago they suspected that I had Endometriosis so a month later I had a laparoscopy and had a large amount removed from my bowel and behind my womb. 3 months on and I am getting dragging pains again and my levels of tiredness are just ridiculous, I am feeling really emotional and getting strange symptoms (close to pregnancy) just before my period comes. I have been to the doctors and I have had hormonal blood tests but they have come back all normal and also the doctor said it's way too early for the Endometriosis to have grown back. So I guess my question is has anyone else had theirs grow back quickly and are these symptoms normal after 3 months since surgery? Struggling to get my head round it all and I have only been diagnosed and I find the information online is quite limited and I didn't really feel like the doctor had any answers for me.

Any help would be very much appreciated just to put my mind at rest. I have gathered that its a bit of a waiting game and nothing will be done until the pain gets worse. Thanks Jo x

1 Reply

Hi Jo

It is an enormous emotional blow to come to terms with a diagnosis but now you have found the site you can hopefully feel supported.

This is largely going to depend on who did the surgery and what they did. A large amount of endo behind the uterus affecting the bowel would usually translate into severe (stage 3/4) endo which should only be treated by a highly skilled surgeon who has done advanced training and will use excision (removing the endo completely) and not thermal ablation which only treats the surface. Also they will be skilled at looking for and identifyning the many appearances of endo that are often missed in general gynaecology. So if you have beeen treated in general gynaecology it is likely not to be a case of endo having come back but of having not been found or removed properly in the first place. You may also have adhesions that have formed after the surgery which can attach and pull.

So was the lap done in general gynaecology and if so where in the UK are you? In England we have a contract that requires severe endo to be dealt with only in a specialist centre and the RCOG guidelines require this also.

In order to try and get an idea of what exactly they found and did I suggest you get a copy of the surgical report from your GP and come back.

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