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Endometriosis UK
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Severe endo stage 4 fused to bowel and bladder recommended hysterectomy but want another child

Hi all

Had my consultant follow up appointment yesterday after I had a diagnostic laparoscopic to drain an 8cm endometrioma cyst. What he told me knocked me for six I can't stop crying. Please someone give me some light at end of the tunnel. Consultant said I advise a hysterectomy as his words were it's as bad as it could get. My ovaries are fused behind my womb. My bladder is fused to it and bowel. In the haze he also mentioned fallopian tubes were not as they were supposed to be it's stage 4 and I have endometriosis in quite a few places. He is referring me to an endorsement specialist . I'm hoping I can have it exercised if that's what it's called and things detaching from my uterus. Has anyone else had a similar diagnosis and gone on to have children. I am very very lucky to have one child I know that and I cherish him but thought we had some hope of another. I'm 37 now and time is ticking. They have said I can try and get in at the woodlands to speed the referral on a bit but had the diagnosis lap on 15th Jan and know they have to leave sometime between them. I'm heart broken

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Hi, so sorry you feel that way :(

You should look for a second opinion; even with a hysterectomy endometriosis will still stay around as it's not just found on the uterus, if it's already present on other organs in the abdomen it will not go away with a hysterectomy, you may have less symptoms.

Look at having the endo excised, and like you said the organs unstuck and then see where you are and how you feel when you recover enough from you op :)

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I'm scared of the risks with it being excercised but I suppose there is risks with all surgery. To be told it's the worst it could be has just knocked me into a really low mood. Trying to remain hopeful the specialist will offer and alternative. Thanks for your reply it's helped

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Big big hugs. I had stage 4 and my endo type or stage was hormone resistant so oopherectomy would not have worked for me and hysterectomy alone does not help endo. I had excision and a deep bowel shave only but it was not as severe as yours, my bowel glued out of position to vagina (so no uterus involvement) with extensive adhesions severe vagina damage requiring vulvectomy along with widespread but more minor plaques including on my bladder, utero sacral ligaments andabove both ovaries.

It's a very difficult personal decision where you have to weigh up pros and cons. Oopherectomy does carry increased risks of some conditions and surgical menopause is a big irreversible Step. Take your time and talk to lots of people. Maybe join a hysterectomy forum. You will find the right choice for you xxx

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