Hysterectomy or not?

[Alwaysanxiou]

Hello

I have severe endometriosis. I have a 4cm endometrioma, blocked fallopian tubes and the whole area is stuck together with lesions, it is on the edge of my bowels now too. Oh and moderate adenomyosis. This involves heavy, painful periods, fatigue and bloating.

I’m 46 years old and have my family but I’m very reluctant to have the recommended hysterectomy. I’m worried about increased cancer risks, osteoporosis and cardio vascular disease (the last two are prevalent in my family). I’m also worried about sexual dysfunction and coping with the side effects of HRT (struggle with progesterone).

I’m very interested in hearing about people’s experiences. I sometimes feel that consultants (mostly male doctors) fail to appreciate the impact and level of fear this has on women of any age, I get the impression they think I’m middle aged and have children so what does it matter now.

Thank you

[cheeks1]

I had a hysterectomy at 44 but my consultant did say to leave the ovaries as these are still needed for the purposes you have discussed and said removing them would not make endo any better I opted for the hysterectomy more so due to Adenomyosis as he said I would get relief from this which I have but with endo he would remove what he could see to provide symptom relief (my symptoms have returned but I knew any surgery is temporary) I have severe endo to with adhesions everywhere.

[Alwaysanxiou in reply to cheeks1]

Thanks for reply. My ovaries need to go apparently, one has an endometrioma on it. I was under the impression that most of the time it doesn’t come back. That’s such a shame for you

[cheeks1 in reply to Alwaysanxiou]

Hi mine has endometriomas too they removed them to preserve the ovaries just check they are specialist in the area. I asked for mine to be removed and he said no. There is a common belief that one removed it doesn’t return have had multiple surgeries for this until I finally saw a specialist

[Alwaysanxiou in reply to cheeks1]

Hi, it is a specialist who just deals with endometriosis. He said the ovaries would just be feeding the endometriosis

[cheeks1 in reply to Alwaysanxiou]

Yeah there is 2 varying opinions I looked into both as even without the ovaries endo seems to find a way. I think just need to look into what’s best for you.

[Alwaysanxiou in reply to cheeks1]

Thank you. I appreciate the time you’ve took to reply. I’ll keep researching

[Chartolfrey]

Hi im 38 due a full pelvic hysterectomy this year, i cant keep my ovaries due to how bad it all is.I was told i would be on hrt till i was 51 to reduce the risks like heart health, bone health etc.

Estrogen feeds endo so even if i kept my bad ovaries they said it can grow again and would need more surgeries.

Ive had a few people have a full hysterectomy and they said they got there life back so im focus on that

[Alwaysanxiou in reply to Chartolfrey]

Thanks for reply. Do the people you know who’ve had a hysterectomy say whether they’ve had any problems associated with it? I’m concerned about prolapse and sexual dysfunction in short term and osteoporosis in longer term. I wonder why if we need to take hrt which can fuel it too we couldn’t keep an ovary?

[Chartolfrey in reply to Alwaysanxiou]

The couple of women i know have had better sex life and ive not heard about prolapse. Im worried aswell slightly but every woman is different and id rather be out of really bad pain. The hrt is only a low does to limit the risks.At the end of the day its ur body and your choice. Personally i have to but i would want the hysterectomy as my sex life is next ro none as i worry abiut the pain and bleesing after. Im was always in pain and still get some flares and just feel like its controlled my life and mental health so im willimg to have it done and just hope it gives me my life back xx

[Alwaysanxiou in reply to Chartolfrey]

Thank you and good luck. I hope it works for you

[Elaine91]

Hello

It’s a really difficult decision to make and different women have markedly different experiences.

I found the HysterSisters site in particular really useful to gain different perspectives on this.

Having been through this:

The surgery did massively improve my endo symptoms

HRT instantly brought some symptoms back

The low hormones do cause rapid aging

HRT isn’t that good (very low dose and poor absorption)

Good luck, hope things work out for you

[Alwaysanxiou in reply to Elaine91]

Thank you and sorry to hear that. I will check out Hystersisters

[Rainbow2468]

Yes they do think like that, i refused a hysterectomy for the reasons you've mentioned here amd others that i discovered on my own research. I have a friend who had a hysterectomy and it made no difference to her endometriosis whatsoever, she still suffers terribly. Sorry i know that this isn't a positive answer. Sending you a big hug x 🤗

[Alwaysanxiou in reply to Rainbow2468]

Thank you. No it’s not what I wanted to hear but that’s why I’m here to hear real people’s experiences, so thanks again

[Rainbow2468 in reply to Alwaysanxiou]

I'm so sorry i couldn't share more positive news 😔

[Hannah818]

I'm due full hysterectomy soon with ovaries out, I've worried about prolapse and menopause issues. But after hearing my ovaries have attached and affecting bowel I feel like I need to do something to stop the growth. I'm 43 . Have heard its been successful for some and not for others. I think I've just come to the point where I feel like I've tried every thing else and growth of endo not stopping and it's affecting bowel and bladder . I'm now in chemical menopause anyway with zoladex so one way or other menopause is starting early for me anyway. Just hoping and praying there's no complications after.

[Alwaysanxiou]

thanks for sharing, hope it goes well

[Scoutybob]

I'm in a very similar situation. I'm almost 42. Family complete. I have stage 4 - bilateral endometriomas, 1 side with a 7.5cm one and the other side almost 5cm. Through both fallopian tubes, kissing ovaries, attachment to the bowel and endo on the bowel as well as adenomyosis.

I'm due my surgery in just under two weeks (freaking out now!). I'm having a more conservative surgery with excision, undoing all adhesions, potential loss of tubes, removal of all endometriomas (I think there are other smaller ones too) but potential loss of one ovary and potential bowel resection.

If that doesn't work then it's on to total pelvic clearance. Part of me thinks I should be doing it now. I just don't know. I don't know what pain is from adeno and what from endo.

It's so difficult to know the right thing to do isn't it?

[Alwaysanxiou in reply to Scoutybob]

It really is. I think if they’re willing to take a more conservative approach first then that’s a good thing. At least you’ll have tried everything before going for the full thing. Good luck

[Scoutybob in reply to Alwaysanxiou]

I just don't wan't to end up in the multiple surgery loop! Good luck making your decision x