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Endometriosis UK
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Can't get a surgeon to take the risk of treating me!!

Hi I am a 56 yr old newbie - was finally diagnosed with endometriosis after a failed attempt at radical hysterectomy due to bleeding polyps and ovarian cysts and fibroids.

When they opened me up I was full of endo wrapped up tightly in adhesions. They found my bowel was stuck to my womb and the endo had spread to my bladder and filled up any spaces that you are supposed to have. The gynae oncologist (oncologist because they didn't know what my bleeding lump was at first) said if she would have tried to take anything away she would have caused more damage and I could end up with a permanent colostomy bag.

She referred me to another gynae surgeon who did a hysteroscopy and removed most of the polyp. He also said that he couldn't take any endometriosis away in case he did more damage inside due to my 'frozen pelvis'.

In November I had bleeding again and after a scan they found a chocolate ovarian cyst; my doc said that the gynae team had contacted her after scanning it and said that they would not open me up again unless it was a definite cancer scare and that hopefully the cyst would disperse on its own.

I have always been in serious pain with my periods before the menopause, pelvis, groin, bowel, & bladder for years - am infertile probably because of my endometriosis and adhesions but no-one wants to treat me. Surely they cannot leave me like this? Is anyone else out there like me?

10 Replies
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If you're under a normal gynae then I'd say get your GP to refer to your closet BSGE centre. Link to where the closet one would be for you --> bsge.org.uk/centre/

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Thanks Lovisa- I followed your link and found one in Cardiff at the University of Wales. I will go back to my GP to ask for a referral.

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Ahh no way I go Cardiff BSGE.

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OMG that sounds very promising - maybe I will see you in the waiting room one day. I still find it strange the consultant who gave the last hysteroscopy didn't refer me on being as he said he couldn 't do anything. I am seeing my GP tomorrow and she will refer me I am sure. Thanks again for your info.

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It is odd when they don't refer to people who are experts regarding this problem, my past gynaes never refered me, I had to give my GP the names of the consultants that I wanted to see, best thing ever as they general care and listen to everything you say. I'm waiting for surgery, this [consultant] was meant to do my last lap, but ended up with [someone else at a different hospital] who obviously didn't care much. I won't lie my first referral to see [my consultant] took 7/8 months but hopefully you won't wait that long.

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Thanks Lovisa - I will let you know what happens after I have seen my GP tomorrow.

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Hi Lovisa-

Just filling you in I have been referred to the specialist centre and have an appointment on May 8th.

Best Wishes

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Excellent news!

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I would follow the advice of finding a proper centre but if you still don’t get the result you want I would google the endo specialists in this country and privately go and have a consultation with them to discuss options. I am under the care of one of the best endo surgeons in the UK and happy to share details though I think they delete this so perhaps better in a message? I am based on the south coast.

Best of luck - I hope you find someone who can help you xxx

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Thanks Catness- I took Lovisa's advice and have found a centre in Cardiff - the same one she goes to - spooky! and I will ask my GP to refer me asap.

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