Living with endometriosis

Hello... I was diagnosed with endometriosis when I was 18 and now I am 30... I have had two surgeries I have been on so many different meds due to my chronic pain even on Lupron... Its gotten so bad I'm getting a hysterectomy in 3 weeks... I have 3 children and this disease affects them so much... They know when I'm in pain even my 3yr old knows... My poor husband be so confused because he can't help me and I just cry due to the pain... At times the tears just roll because it hurt to move...with my last surgery the endo had my right ovary imbedded in my back... If anyone had a hysterectomy do to endo please let me know if it helped... Thanks in advance

2 Replies

  • If you are on Lupron and you've had no improvement then a hysterectomy won't help, your ovaries produce hormones, particularly the 1 that's called O-estrogen which fuels the growth of endometriosis and Progesterone, the hormone that normally balances it out. O-estrogen is also produced by the growths of endometriosis, which means if you have a full hysterectomy you'll have nothing fighting all of the estrogen but hrt which could potentially fuel endo growth too.

    If you have Adenomyosis, a hysterectomy will mean you'all have less pain since your uterus won't be swelling up and putting pressure on the organs.

    Everyone's different but a hysterectomy doesn't solve everything. Have you tried pelvic floor Physiotherapy? I know at this point it seems like a bad idea but it's helped my pelvic pain a lot since people with endometriois tend to develop a condition called Pelvic Floor Dysfunction.

  • Hi - the problem is that if you have had 2 laps and are still experiencing pain it may well be that you haven't been treated effectively - i.e. you might not have had all the endo removed. Do you know where endo was found and how it was treated? If you do still have endo then removal of the uterus won't remove that endo and even if you are having your ovaries removed you will have to go on HRT which can continue to feed it. A hysterectomy isn't an NHS recommended treatment for endo but many general gynaecologists still do it. Where in the UK are you?

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