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Menopause

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Atypical Endometrial Hyperplasia: is hysterectomy the only option?

6 replies

LostNFoundSV · 29/02/2024 14:01

Hi
Post menopause, 61, overweight,AEH found after hysteroscopy biopsy. I’ve been offered total hysterectomy but having read some health journals am v concerned about surgery outcomes and associated risks, eg., organ damage, rapid aging, decline of health and cognitive function, increased Parkinson’s disease risk, etc.
Either way, it feels like game over. Do I have any healthy choices here?

OP posts:
JinglingSpringbells · 29/02/2024 14:12

I'm sorry - very worrying for you.

To be honest, most hysterectomies do not result in all those things you listed. At 61, your ovaries are not really functioning much anyway and apart from actual damage during the operation, the other 'side effects' are connected to loss of estrogen when the ovaries are removed.

My guess is that what you've quoted refers to a total hysterectomy - removal of the ovaries- in younger women. (who'd now be given HRT to offset the loss and the risks you list.)

Have you discussed this with your consultant?

There is perhaps the option of having a Mirena coil fitted to reverse the hyperplasia but usually (and this is just based on what I've read) hyperplasia that is atypical needs a hysterectomy as it can lead to cancer.

If you wanted HRT - just estrogen- after the operation you may be able to have it.

LostNFoundSV · 01/03/2024 14:41

Thanks for responding @JinglingSpringbells I’ve asked for Utrogestan 200mg. Not licensed apparently- they’ve just offered me provera 200mg progestin for 3 months. I’m ok with this but have asked for support to manage the side effects of such a high dose only to be told ‘not my area’ likewise with support to lose weight fast. I have high BP and overweight so cautious about increased risk of stroke, thrombosis on provera. I’m in the nordics atm and their own research shows high risk of organ damage, reduced QoL due to inexperienced surgeons. The other journals I read about rapid decline/aging/parkinson’s were def for post menopause patients.

OP posts:
JinglingSpringbells · 01/03/2024 16:23

I’m in the nordics atm and their own research shows high risk of organ damage, reduced QoL due to inexperienced surgeons. The other journals I read about rapid decline/aging/parkinson’s were def for post menopause patients.

I think you might be better posting on women's health here (another part of the forum) OR starting new thread on hysterectomies here.

The RCOG has a guide (online) on hyperplasia where they set out very clearly what treatment should be.
Last time I looked, it was insertion of a Mirena coil, or Norethisterone for 6 months .

However where the hyperplasia is atypical, and the woman post meno, there may be a preference for a hysterectomy to be sure it doesn't become cancerous.

The risks you mention are not usually found with older women because their ovaries have pretty much packed up anyway.

JinglingSpringbells · 01/03/2024 16:30

https://www.rcog.org.uk/media/knmjbj5c/gtg_67_endometrial_hyperplasia.pdf

@LostNFoundSV On pages 4 and 5 of this guide you can see the UK approach to AH.

It's hysterectomy or possibly a Mirena coil.

Abra1t · 01/03/2024 16:36

I tried for over three years to combat atypical hyperplasia with a mirena. It kept going and then being found in biopsied cells. I had six hysteroscopies in that time and had had enough.

I had a total hysterectomy plus ovaries out in July vaginally. I went to my daughter’s graduation ten days later. I haven’t put on weight, I don’t think I look any different. But I do keep fit and I wasn’t overweight before. I do the Squeezy pelvic floor exercises every day to keep everything in place.

I stayed on my HRT throughout. No progesterone needed post-hysterectomy, of course.

Seriously, I feel great.

Abra1t · 01/03/2024 16:42

I would see if they’ll consider a low dose of oestrogen gel for you as well? And stay on it after the op.

My consultant told me at that even at 59, my ovaries would have been producing some oestrogen and he was happy for me to stay on oestrogel, and possibly even to increase my dose. But I did start on HRT at 55.

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