Having ovaries removed : Hi all, I... - Endometriosis UK

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Having ovaries removed

bethm1983 profile image
13 Replies

Hi all,

I wondered if anyone hear had a hysterectomy but kept their ovaries and then had their ovaries removed at a later date?

I'm wondering what the difference was in the pain levels once they were removed. Was it worth it? Pros and cons etc

Thanks xx

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bethm1983 profile image
bethm1983
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GCLS profile image
GCLS

Hi, im also interested to learn more on this area.

Bettyheslop profile image
Bettyheslop

Hi,I wouldn’t like to advise you either way as we are all so different but I will tell you what happed to me.

Almost 5 years ago now I had a hysterectomy and kept one ovary as consultant felt I was a bit young to go into menopause.

I had severe endometriosis, it was a big operation, I ended up having my appendix removed too as was stuck to all of the endometriosis adhesions. I had a few complications and took me quite a while to get over but after a few months I was so glad I did it, I was pain free and I was taking the mini pill to try to keep endometriosis at bay. All was good for about 2 years then the pain started again, it was mainly around my remaining ovary, after a while I knew I had a cyst as I could feel it from the outside.

In the middle of all this I also had a kidney stone and they spotted the cyst when they were scanning me for that. The pain became unbearable. I got an appointment for more scans to confirm things properly but then Covid happened so everything was put off. In the end I paid for a private scan which confirmed I had a large endometrioma.

I was transferred back to the NHS and had the endometrioma along with my remaining ovary removed last November.

The surgeon said it was a nightmare, I was full of endometriosis adhesions again, my ovary was twisted and stuck to my pelvic wall, no wonder it was so painful. And yes my original surgery was carried out by BSGE specialists, my surgeon was an expert. He thought he had done quite a good job removing it all. I’m just one of the unlucky ones that it had grow back so badly so quickly.

I honestly thought the surgery I had in November would be easier to get over than the one where I had hysterectomy, I was wrong! I really struggled with pain and healing and I am still really bloated now.

I am pain free now though which is pretty fantastic, I am taking Tibolone rather than the usual HRT.

If I knew now I would have to go through it all again I would have just had both ovaries removed during hysterectomy. But saying that other people advised me that they wished they had had ovaries removed at time of hysterectomy and I still chose to keep one. (I only kept one as the other was completely stuck to my uterus)

It’s such a hard choice as you can’t predict what is going to happen and like I say for a couple of years I was really happy with how things turned out, until I was in pain again!

Honestly though, whatever you do, if you are in pain all of the time now and surgery relieves that even for a couple of years I feel like it’s really worth it,

I cannot believe how much I suffered for over 20 plus years before hysterectomy, you get used to being in pain all of the time and when you are pain free it’s actually amazing.

I hope whatever you do it does well for you.

Xx

GCLS profile image
GCLS in reply to Bettyheslop

Oh dear. Im scared

Bettyheslop profile image
Bettyheslop in reply to GCLS

You go into instant menopause and I don’t know how that makes everyone else feel but honestly I’ve found it nothing compared to years of vile periods and endometriosis.I couldn’t start my Tibolone for 8 weeks after op as I had high blood pressure that I had to get settled before I was allowed to take it.

During that time the most noticeable thing was nausea, a bit like being pregnant, I suppose because of the sudden hormonal change. I was also a bit warmer in the night which I quite enjoyed as I’m normally freezing.

I think I would have managed without Tibolone, it was no where near as bad as I was expecting and the only reason I carried in with going on Tibolone was that the GP made me worry about me having fractured bones when I’m old and kept telling me I’d get a dry bladder.

Are you actually having surgery or just considering it at the moment?

Xx

bethm1983 profile image
bethm1983 in reply to Bettyheslop

Thank you for sharing, no im just trying to get info at the moment. Those were my thoughts too. Every woman goes through the menopause at some point and I'm not saying its easy but I just can't imagine it being as bad as this pain I suffer regularly! Xx

GCLS profile image
GCLS in reply to Bettyheslop

Does removing both ovaries induce menopause?

CurlyandConfused profile image
CurlyandConfused in reply to GCLS

Yep, basically overnight but there is HRT to lesson the effect.

bethm1983 profile image
bethm1983 in reply to Bettyheslop

Thank you for this, that is also one of my issues, my left ovary is stuck to my bowel so I could end up with a stoma bag. So hard to know what to do. Thanks for sharing and I hope you are feeling better now xx

Abbbb profile image
Abbbb

Hi bethm1983,

I think the reply you've had is a great one for information. Its also important to remember that keeping 1 ovary is still a gamble, as due to having to redirect blood supplies, the ovary can dramatically reduce in function from day one. So it could be you would still require hrt quickly depending on how well the ovary functions alone.

I had a full hysterectomy including both ovaries at 33, 2 years ago now. It was a hard decision but the best thing I could have done. My procedure went perfectly, my recovery was textbook. The relief of the pain of the endo going was worth any discomfort recovering from the surgery.

I also think its good to check with female families members if you can on how their menopause has gone. My mum did not have any symptoms apart from hot flushes, so I was gambling on good genes. I won big time, and having always been cold in the past found hot flushes quite a novelty. But they also now are 95% gone with balanced hrt. Took a good 18months to settle on the right hrt balance, with no help from bloody gp or NHS menopause clinic. Just tried different dosages until it worked. I found the recommended doses far too high.

It is such a hard decision, please do weigh up your personal options but my story has been a very positive end to years of agony so I hope it gives you some hope! If you have any questions d let me know!

Xxxx

bethm1983 profile image
bethm1983 in reply to Abbbb

Thank you for sharing im so happy for you, thats you had a good experience!! Xx

bighug profile image
bighug

Hi,

Like some of the replies already, each of us are different and will have a different experience whatever choice you make. And I hope you choose the right one for you 😊

Unfortunately for me, mine wasn’t such plain sailing, I had a total hysterectomy in July 2018, but left my ovaries in due to my age mainly. The surgery went well and the recovery too. Then after only 3 months the pain returned.

I was back in theatre November 2019 to have my ovaries removed and the returning endo. I was given Tibolone for the menopause and all was fine, just a few hot flushes, nothing compared to the endo pain. Sadly I’m now having pelvic pain again, I’ve recently seen the consultant who has suggested another laparoscopy, no idea why I have pain again, I’m hoping whatever is causing it will be resolved soon.

Good luck with your decision, you might be one of the lucky ones, and all goes well with your surgery and you can live pain free in the future.

Take care, big hug 🤗

bethm1983 profile image
bethm1983 in reply to bighug

Thank you for your reply. Im sorry you have gone through this. Im still coming to terms with the fact I will probably always have pain of some sort but im still keen to reduce the chances of pain as much as possible. Xx

Rjb_88 profile image
Rjb_88

My Mum has a hysterectomy and the ovaries were left behind because of her age, her pain was greatly improved and bleeding stopped based on what they did remove.

The ovaries don’t just stop you starting the menopause, they also protect you and your body from cancers, bone issues etc so it’ll usually be the preferred option of the consultants to keep them for you if at all possible but every one is different so maybe see how they’re looking when they operate?

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