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Endometriosis UK
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New to this!

Hello, I'm 32 years old and after a long battle I have recently been diagnosed with endo, it's currently on my liver, uterus and between my bowel and bladder.

I'm struggling with the effect it's having on my life, the lack of energy and amount of pain is somewhat debilitating. I've had two surgeries so far but I'm looking for information on the best steps moving forward, be that tablets or another op.


2 Replies

So sorry to hear this news, but it is better to know exactly what is going on - some people go for ever without being taken seriously and receiving a lap and proper diagnosis.

Make sure that they are taking the proper pathway to treating you. From what you say about bladder and bowel involvement, if you are in the UK, I would expect them to be sending you to a 'specialist endo Unit' or a 'BSGE' Centre, staffed by only Specialist Endo Consultants with back up Endo-aware bowel surgeons. If you are not in the UK, check the proper procedure with your local Endo Advice Groups. In the UK your GP has a special protocol, that he is supposed to follow, to send you to your nearest BSGE Centre. Talk to the advisors at 'Endo Uk' (link at the top of the page, which will lead to phone and email contact details) who host this site. Also, read around on here, plus see if you have any local Endo support Groups. Endo as complex as your sounds should not be treated by general gynaes at an ordinary hospital, as they do not have the expertise in Endo surgery.

I don't think it is common for the liver to be affected (but could be wrong), so you do need to make sure you are getting the best treatment.

Hope this doesn't sound bossy or scary, I'm just in a rush. But do talk to the 'Endo UK' people.

Take care, it is good that you now know what is going on.


Hello! Thank you for sending this message, it doesn't sound bossy at all - it's informative which is exactly the help I am after.

I will get in touch with Endo UK as you say.

Thank you!! X


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