Hysterectomy leaving 1 ovary... - Endometriosis UK

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Hysterectomy leaving 1 ovary...

DarkStar85 profile image
20 Replies

Does anyone have experience of this? I seen an expert gynae BSGE clinical lead and he was so blaze about the fact I may as well just get a hysterectomy since I'm done having kids. I have andenomyosis and endo 6 cysts on one ovary so he said I could keep one which would stop menopause symptoms.

But I'm only 38 and don't want this major surgery. From what I read women still get menopause symptoms with one ovary and there could be problems having sex as well as other complications. I've already had one organ removed that I needed...my thyroid and its played bloody havoc with my life for 12 years. I'm not ready to loose another organ if I can help it. I don't have excruciating pain often and I can handle the week a month knocked out with periods. It's the fatigue, brain fog, joint pain and hormone imbalance that bothers me. Feel so deflated that surgery was the first option. I did say I haven't tolerated hormones in the past. Any advice greatly received.

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20 Replies
Rainbow2468 profile image
Rainbow2468

I did not want a hysterectomy asked for a second opinion and have been given prostap injections now not having any issues, please message if you want to ask any questions, sending you a big hug too 🤗

DarkStar85 profile image
DarkStar85 in reply toRainbow2468

Thank you ❤️ prostap scares me too! I feel bad enough with hormone Imbalance without adding any meno symptoms! My pain isn't too bad so I guess I could carry on without any treatment for a bit. I'll be willing to get excision. J7st don't want it progressing and getting worse. Glad to hear you're doing well on the treatment x

Rainbow2468 profile image
Rainbow2468 in reply toDarkStar85

Prostrap scared me but so far it's been the best thing I've done No side effects at all so far. I think you're very wise indeed not going for the hysterectomy. I looked into it and I was thinking absolutely not x

Lindle profile image
Lindle in reply toRainbow2468

But prostap can only be taken short term anyway so doesn’t resolve the problem.

Rainbow2468 profile image
Rainbow2468 in reply toLindle

Not according to the gynecologist I saw he said I can have it as long as I want to take it.

Lindle profile image
Lindle in reply toRainbow2468

He is advising against guidelines as the long term risks are just not known. It doesn’t treat endo so it can continue progressing anyway . It’s not black and white. For those with adeno a hysterectomy can be the right choice as it then removes the risk of endometrial cancer that it carries going through menopause.

Rainbow2468 profile image
Rainbow2468 in reply toLindle

But it can lead women prone to other cancers and a whole host of other issues

Lindle profile image
Lindle in reply toRainbow2468

Such as?

Rainbow2468 profile image
Rainbow2468 in reply toLindle

Amd hysterectomies come with many risks

AllthatGlitters profile image
AllthatGlitters

The amount of times I have heard from different consultants that i need to consider a hysterectomy is unreal, like it solves everything. I have adeno and endo and my own GP has advised against it, as like you said it can cause other problems too. I have not had children, however I still want to keep all of my bits so to say.

Like you I don’t tolerate hormonal treatments at all, tried the implant, decepeptyl injections, the pill and HRT. All made me so much heavier, bloated and why would I put myself through that.

Sorry I don’t have any suggestions or answers for you, however you have every right to say no to certain treatments (I have done this lots in the past) x

Tulip1983 profile image
Tulip1983 in reply toAllthatGlitters

I really identify with this. I've been put on a waiting list for a hysterectomy ant the removal of my ovaries but I don't want to lose my bits! I'm 40 and know that the clock is ticking in terms of having children but don't want to completely shut the door on that possibility.

AllthatGlitters profile image
AllthatGlitters in reply toTulip1983

I’m 41 but for me as I have had 2 endometrial ablations I won’t be able to have children. I was told years ago anyway it would be difficult for me as I also have other health conditions so I decided I wasn’t going to put myself through all of that. Even though my bits won’t be of use with regards to fertility, I still want to keep my bits 💜

Tulip1983 profile image
Tulip1983 in reply toAllthatGlitters

I worry I'm just kidding myself.

DarkStar85 profile image
DarkStar85 in reply toAllthatGlitters

Sorry to hear you're in the same boat. But also glad I'm not alone! I'll definitely be refusing hysterectomy as it only cures adeno and not endo. I'm waiting for an MRI to see how extensive the endo is. I'll be willing to do excision op but not hysterectomy. Have you had excision? Do you take supplements to help? I'm considering DIM and Quercitin. I take omega 3 and iron think it's been helping x

AllthatGlitters profile image
AllthatGlitters in reply toDarkStar85

Hello I have had a laparoscopy but only for diagnostic purposes, also had 2 endometrial ablations and having another lap soon. Having other problems especially with my bowel, it’s never ending. It’s tiring. I take cod liver oil and Vit C & D, use to take evening primrose but was unsure if it was making a difference x

DarkStar85 profile image
DarkStar85 in reply toAllthatGlitters

Yes its never ending. My bowel and bladder issues are starting to ramp up so i guess it's only going yo get worse. I started EPO too, I feel its helped balance hormones a bit x

Tulip1983 profile image
Tulip1983 in reply toDarkStar85

I only discovered I had endo in July this year. The doctors initially thought the endo had reached the bowel and sent me for a sigmoidoscopy. This thankfully showed that the endo hadn't spread to the bowel but I was diagnosed with ulcerative colitis. I consulted a herbalist who has prescribed various things to sort out my digestion and have cut out a number of things from my diet after doing an intolerance test. I've also been trying castor oil packs on my stomach. To be honest, I'll give anything a go if it makes me feel better! xx

Moon_maiden profile image
Moon_maiden

Hi

It’s a very hard disease to know what to do. I was diagnosed 51, always had bad periods etc., but got on with it. I had a hysterectomy the same year, but the damage was done. I get pain everyday, from what I don’t know but could be Endo damage. I wish I’d sought treatment sooner.

They don’t know nearly enough about the disease, hormones and such that they can be specific. Get some blood tests done for hormones as in-depth as you can so you can base medication on what you might need to get a balance rather than guessing. Not having thyroid will hinder processing of hormones.

Not sure if I can mention but there is a good group on Facebook for surgical menopause uk and many women have had Endo as well, that may help you to get some other views.

You have to do what you are comfortable with.

DarkStar85 profile image
DarkStar85 in reply toMoon_maiden

Totally agree the Drs don't know enough. Especially about hormones. I'll definitely accept the excision procedure ti cut out endo and try and atop it getting worse. Just can't part with another vital organ to potentially make me feel even worse! Yes, you're right about the lack of thyroid making processing hormones more difficult. Wish I knew the right thing to do.

Good advice, I've just bought an online female panel hormones test. Hopefully the levels will give an idea of best treatment. Can't believe the Drs are so unwilling to do hormone bloods. Sorry you've struggled for so long x

Moon_maiden profile image
Moon_maiden in reply toDarkStar85

It’s hard to know what to do sometimes but that sounds like a plan. Excision will hopefully keep it under control. Totally understand not wanting to lose bits, I became desperate. Last op I asked them to take the appendix which also helped.

Hope the test gives some info

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