Hysterectomy, Oophorectomy or neither?

[AilsS]

Endo sufferer since forever. Have moderate/severe endo & significant adhesions from laps, c - section & appendectomy. Several laps later, mirena, decapeptyl treatment last year & yet here I am back to square 1 but now perimenopausal for real & in a dilemma. Have a 5cm endometrioma on left ovary with I am presuming extensive regrowth of all endometriosis lesions so in pain 24/7. It's been 8 years since last laproscopy & adhesion removal. Bowel & bladder also affected.

Question for you warriors out there, my gynae has suggested a hysterectomy ( which I am not entirely ok with) Or left ovary removal along with the endometrioma or do nothing... eat pain relievers, exercise & diet & generally try to self manage until I hit that menopause when it should all die down .

I am leaning towards one in particular but wanted to ask the experts - for & against either or all or any. All advice greatly appreciated x

[My_Username]

Hi,

I had a hysterectomy and oophorectomy, and I'm still not sure that it was the right things to do.

It's a major story, but this is what happened.

My gynae surgeon was of the opinion that the best way to ensure that my endo didn't grow back was to remove the womb and ovaries. The effect of removing my ovaries was really minimised, like it was no big deal, and he said that any symptoms could be sorted out with a bit of add-back HRT. So I went with that option as I was absolutely desperate and had been waiting years for treatment. I was worried that if it did grow back, they would probably refuse any more surgery.

The surgery was a success. It took a long time to recover, mainly due to losing a large section of my bowels, but since then I've been pretty much pain free and my bloated belly went back to normal. However, I didn't get on with the HRT at all. The centres menopause nurse told me it didn't matter, just take calcium and vitamin D to protect my bones, so I did.

Initially I got really bad insomnia, having always slept 9 -10 hours before the op, I got maybe 4 hours of fragmented sleep, which was left me really tired and fuzzy headed. Herbal sleep remedies did nothing at all and I was reluctant to get onto prescription sleeping tablets. It took about 5 years to settle down, but even then the best I got was about 6 hours with difficulty getting to sleep, and staying asleep.

The other problems took years to develop.

Long term hormone deficiency left me physically weak, prone to back ache, tired, dry eyes, dry hair, dry skin, dry other bits, accelerated ageing - wrinkles, deteriorating eyesight, osteopenia. I got Burning Mouth Syndrome (triggered by having a dental crown) which is absolutely horrible - essentially nerve damage occurring almost exclusively in post menopausal women as oestrogen protects nerves. I also got pre-diabetes and gained about 10kg, having been slim my entire life before the op.

Given all these problems, I decided to give HRT another try as "natural" hormones are now available - utrogestan and oestrogel. I'm OK with the oestrogel, but the utrogestan has made my sleep problems 100 time worse. For me, it's nothing like my own progesterone. Rather than being relaxing and sleep inducing, it's like having a very large mug of espresso - and from what I've read on menopause forums, it's a fairly common problem. The half life is so long, that even if I take it in the morning, it's still in my system by night so still messes up my sleep. And I can't take the oestrogen by itself for various reasons.

Anyway - for me the op. did sort out the endo, which was extremely bad. However, ovarian hormones are important for the entire body and, for me, HRT is nothing like the real thing.

[AilsS in reply to My_Username]

Thank you My_Username for all that info. Much appreciated 😊