Endometriosis UK
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Specialist endo nurse?

I have a dilemma. I'm now 49 and 6 months ago I had a pelvic mass removed by surgery, performed by the oncology gynaecologist at my local hospital. Sick of being told I had IBS by my GP I paid privately for scans and was then seen immediately by the NHS gynae team who thought it was cancer. Fortunately it was not. After surgery my surgeon was insistent that I went on Oestrogen only HRT, for all the right reasons, as I have no ovaries. I did some research and found that Oestrogen will likely restart the Endo so decided not to take anything. I saw a nurse from my GP surgery a few weeks ago and she said that I should be in regular contact with a specialist endo nurse from the hospital and should be on some form of medication to keep it at bay. I haven't made that call yet but wondered if anyone has had a similar experience and knows of meds that aren't HRT?

I'm coping with the hot flushes, needing the loo several times a night and the moods but would rather not have them!


2 Replies

Hi - did you previously have a hysterectomy and your ovaries removed? I'm not sure what the nurse at the GP surgery means as with no ovaries and no oestrogen replacement there would be no more to be done to keep it at bay medically. Only ensuring it had all been removed can do that. Where did you have endo and was it all excised? I am so glad that you did not go on HRT as even women without endo wouldn't be recommended to take it after 50 without careful consideration. It can trigger any endo that has been left and that happened with me. I went on to have stage 4 after taking HRT. Younger women have to balance the risks but at your age you might have been through natural menopause anyway and no longer be producing oestrogen from the ovaries.


Hi Lindle

I had a hysterectomy in 2011 but kept my ovaries "to see me through the menopause". My ovaries were removed during my last surgery as they were tangled up in the mass and a chocolate cyst had burst causing the chronic pelvic infection. The mass had formed on the stump of my cervix and had glued everything together. As far as I know the surgeon removed all of the endo and I started the menopause almost immediately after the surgery. I remember reading your post about HRT and that confirmed my decision not to take it. I don't know what the practice nurse meant when she spoke about meds then. She's on maternity leave at present so I can't ask her!

Thankyou for your reply. It's good to have this forum to be able to get information and help.



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