Endometriosis UK
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Feeling lost

My first post, I am just feeling so lost at the moment. Any advise direction would be appreciated.

I was diagnosed with severe endometriosis after a laproscopy where the removed a chocolate cyst but did not remove the endometriosis. It was shown that I have a hydrosalphinx on one of my tubes and that my bowels are affected. This was done by a gynae department. I had an mri and scans. They tried to refer me to my local BSGE for surgery. As they agreed this was the best solution as I did not want to take any format of contraception. Me and my husband have been trying to conceive for 8 years (I'm 30) and had 2 failed ICSI rounds (pre tests did not indicate and issues). The BSGE consultant will not see me until I have tried the medication even though the gynae surgeon has been pushing back saying this is the best option for me and if the BSGE won't take me he will find the correct bowel and gynae surgeons to complete the operation.

I really don't know what is best I am in a lot of pain and suffering with fatigue and just general life :( (I know a lot of you guys are the same) I just feel lost in limbo have I missed something I should be doing? How can I help the pain and am I best giving in so I can maybe get referred to the BSGE consultant after a years medication? I'm just lost!

4 Replies

Hey there...

I feel your frustration.. Im certainly no expert, but felt compelled to reply.

Try to find an alternative Bsge clinic... it's really up to you if you don't want to take medication, especially if you want to conceive.

I'm not familiar with Hydrosalphinx, but surely this shouldn't be left untreated. this may be why the Bsge specialist is suggesting the more 'conservative' treatment? . I would fight for a 2nd opinion, your perfectly in your right. check the Bsge web site, find an alternative one? Use the Nhs e-referral service.

best of luck and Don't give up xx Big hug


Thank you. :)




The BSGE centre is failing to follow correct protocol. There is a NHS contract for treatment of severe/rectovaginal endo that represents the BSGE specification and this is absolutely clear that in the case of such disease it must be excised for stages 3 onwards wherever the location. Furthermore it confirms that medical treatment is not appropriate for such stages. A complaint needs to be made about this to avoid others being treated the same.

I don't know where in the UK you are, but the e-referral service only applies to England. This isn't the usual pathway for BSGE referrals as the referral is to a centre not an individual, so it is usual to refer directly.




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