Endometriosis UK
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Gnrh

Hi all,

Last night I met another new consultant who told me what I already know. I have Endo. Thanks. I am stage 4 and gosh my body knows it!

Anyway, long story short he's suggesting Gnrh injections for 3 months, then if they work out me on progesterone only pill. The idea, to see how I cope without the use of my ovaries, I understand that. He then said if I cope well I could come back and have my ovaries out.

If I don't cope well he would refer me to another consultant who would do the surgery. He told me there's a 5-7% chance of bowel leakage.

Surely the Endo needs excising anyway, regardless of whether I go onto Gnrh or any form of HRT?

Lost and frustrated. I feel like a pinball. I'm hitting all these places, been referred here there and everywhere, yet I'm not scoring any points.

X

4 Replies
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Are you being seen at a bsge centre? I have had an oophorectomy and it should be a last resort after everything else has been tried. It's not an alternative to excision and it puts you in premature menopause which causes long terms health problems.

Reply

How are you coping with the symptoms of early menopause and how has it affected your Endo? Did they excise the Endo?

I will try Gnrh but I think I'm looking for excision of what's already there as I'm worried about the impact of the bowel.

Thanks for sharing your experience.

Reply

I had very extensive endo - I had a large rectovaginal nodule, and I had further large (2cm+) lesions on my left ureter and uterosacral ligament and right adnexae, which had pulled my uterus and bowel over into my right hip. I had hydrosalpinx in my right tube, kissing ovaries, endometriomas. I also had adenomyosis. It was just a nightmare. I had to have a hysterectomy and oophorectomy and they excised the endo as well. It has been brilliant for me in terms of pain relief and has really given me my life back but surgical menopause is hard. HRT does not feel like your own hormones. I've put on a lot of weight which I cannot get rid of and I have joint and muscle pain and generally feel old and knackered :/ My sex drive has also completely gone, even with the HRT. I've been referred to the menopause clinic at my bsge centre for help because I have found that the GP doesn't know enough about surgical menopause.

I've had 2 courses of the gnrh and in my experience the oophorectomy has been a completely different experience, but the gnrh didn't work particularly well for me. With HRT add back I still had periods and without it the bleeding stopped but I still had pain.

Reply

Oh gosh you really have been through the mill! How long has it been since surgery?

I was messed around by the NHS, was told I was going to a specialist Endo centre then when I got there it turned out I just saw a regular gynaecologist who didn't understand at all. At the end of my tether I went to Bupa who has told me about Gnrh in my initial post. He said he would refer me to specialist but I can't find that hospital on the bsge website so I'm unclear if it's an appropriate place or not now.

3 surgeons have refused to operate now and I just feel like I'm being messed around.

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