Both ovaries out or not?

[Loveneige]

Hi, its me again!

So ive read my notes from my MDT meeting and noticed they want to take both my ovaries out when they do my hysterectomy and endo excision.

One has a big endometrioma on it and as of last year the scan showed the other was healthy.

My question is do I agree to them both coming out and being thrown into full menopause or do I keep one.

It's all scaring me now I'm 50 but am not anywhere near menopause.

I'm about to try zoladex to see how it goes and they want me to do that before my op.

Has anyone had experience of this? Either one or both ovaries removed and how it affected them? Obviously the hrt route then may bring the endo back and also I'm guessing if they leave one in then the endo may come back.

Thankyou for reading this far!

[Lornalost89]

Hi. I'm starting zoladex too (meant to be last month but I put it off scared) app for 5th June now. My Dr said they want me to try this as they believe

if I have no relief from zoladex it tells them removing my ovaries won't be necessary as it won't bring any additional benefit, if it helps it could show them my ovaries are best removed as they are causing more problems (I have major issues during ovulation and with ovarian cysts)

[Loveneige in reply to Lornalost89]

Thankyou for you're info. I'm hoping the zoladex will kill some of the pain too. It's hard to tell what pain is which with me as I'm all stuck together in places.

[Lornalost89 in reply to Loveneige]

They suspect the same for me from my MRI and previous surgery's. I had my fallopian tubes removed around 8 years ago now which were buried into my abdominal wall. With such a long wait between referrals and appointments etc it seems everything just grows worse and worse.

I worry my MRI will be outdated by the time we have a surgical plan 🫠

[Loveneige in reply to Lornalost89]

100% I fell you on that one So the mdt meeting once looking at an mri from Feb 23! So 15 months ago! Who knows whats happening in those 15 months. I've got worse for sure. I just hope I'm not so bad that they can't help me.

[JOSANDY40 in reply to Loveneige]

The Zoladex as you know stops periods this may help with everything perhaps staying on Zoladex. Yes if necessary I agree very much with one ovary remaining after a womb being removed. Generally large cysts can with a specialist can do Keyhole Surgery as to the Hysto I doubt they will with you achieve a vaginal operation that for them why they mention a total Hysto. They could just remove the womb a lesser operation, perhaps vaginally, then cyst Keyhole? They tend to have the Theatre setup for set Operations.Remember it's your body they just want to fix your symptoms now, the future health is another matter.

Personally I would really try hard to take the Zoladex longterm as periods stop and the Estrogen stopped or very low then have the cyst removed by Keyhole, the Womb may settle down.

All these decisions are tough. I would try to do less first.

x

[Jem33]

hi I had both my ovaries out at time of hysterectomy. It was my choice prior to surgery as I was only turning 40 at the time. I tried to weigh up the pros and cons when making my decision ie menopause young or additional risk of endo growing back (albeit that could still happen even with them out).

I’m glad I chose to have mine out as both surgeons said they were covered in endo.

Prior to surgery I was on decapeptyl, similar to zoladex, and to be honest my menopause symptoms were worse on them than they are now.

For context I had stage 4 endo, bilateral endometriomas, adenomyosis and a frozen pelvis (ovaries stuck to back of uterus and all stuck to bowel)

You need to be happy with your decision as it’s your body so unless it was medically necessary I’m sure you could ask to keep them. I wished someone could’ve made the decision for me at the time but now I’m glad it was my decision and once I accepted this is what is happening I strangely felt more positive and relieved.

I’m still having some pain but nothing like before and it’s still relatively early days for me (surgery was Jan 24) I thought emotionally i would struggle, that I would feel different like I was missing a part of me but that hasn’t been the case. I had one moment when I realised ‘oh my body can’t have anymore kids’ and even though I don’t want anymore it was still a strange sensation. For me it’s all been about acceptance and giving myself the best prospects and not to be in so much excruciating pain anymore.

Best of luck with whatever you decide.

[Loveneige in reply to Jem33]

Thankyou, it's good to know people's experiences. I think another chat with the consultant will help me with a decision.

[Booty42]

HiI have experienced exactly this scenario last year. I had a large endometrioma on my left ovary and MDT wanted to take everything out.

My feelings were that if it could be avoided I wanted to go that route, I'm 47 and not in or going through menopause. My reasons were that your ovaries serve protective hormones even after menopause and I don't think any chemicals can truly replace what your body produces effectively, also I didn't want to be thrown into menopause when my body wasn't ready.

I opted for one ovary removal and fallopian tube removal as that was diseased. They tried to fit a coil during surgery but due to shape of uterus was unable.

I was put on prostap and Tibolone for 6 months following surgery (and mini pill but had to stop that because of the bleeding).

My last prostap was in Dec and my periods came back in March. I saw consultant last week for follow up, because I'm still having full on periods and symptoms (period pains, bleeding for 7+ days etc) she has suggested I try the depo as I have no other treatments left to try. I havnt started that yet, she did say if that doesn't do what tgey would expect I would need further surgery. My symptoms are worse than I remember pre-op but maybe I got used to the symptoms before op then I had that short time with no symptoms so I don't know, but I'm bloated most days, feel period painy most days and seem to have sore breasts constantly. I have painful pressure really low down. So I don't know what's for the best because I want to keep other ovary but is it worth the symptoms, it's unfortunately a double ended sword.

Good luck with the route you decide

[Loveneige in reply to Booty42]

Wow you've been through it. It is, like you say a double edged sword but sounds like I need another chat and weigh out the consequences. Thankyou

[white61]

not sure if there’s defo a correct answer I guess everyone will have different opinions but I lost my one ovary at 23 years old because of a massive cyst and losing that really upset me so I’m holding onto my other one for dear life. I guess it depends like you say if u want to go into menopause now or do they think that there’s a big risk that you will have a cyst in the ovary u have left at some point and may need surgery in the future to remove it. Sorry if it’s not much help my reply but I guess there’s several ways to look at it, just follow your gut instinct and do what you would like to do and think is best, don’t let others influence you too much. It’s good to get opinions but you don’t want to regret any decisions if possible. Sending you big hugs xxx

[Loveneige in reply to white61]

Thankyou for your advice. Big decisions ahead! 😊

[JOSANDY40]

I feel your over reacting at this moment. Zoladex is the way forward. Its not easy the 1st few mths but you will settle in it. I have had the very worst type of Endo effecting my whole trunk with giant cysts and huge distortion of my interior. I have in the past been offered a Hysterectomy ar 26, 42,. I am over 60 now! I feel you require a 2nd Opinion and to delay any Operation to give you a Hysto unless they feel you have Cancer? The cyst can be removed without a Hysto in normal Endo treatment. The new belief on Endometriosis is that often a Hysto does not fix Endo for most people. Many Gynaecologist still go down thos route to fix the symptoms you have now but having a Hysto has its issues as well. Like nerve damage with other pain, bowel or bladder damage. A problem taking HRT, aging faster. A problem with the sling Web they put in to hold other organs up. Yes some woman have no issues when having a Hysto but is a one way procedure! I am still having issues with Endometriosis and pain. I have gone through menopause late but I am a lot better generally. I stayed in Zoladex 10yrs with 2 breaks of the drug. I take painkillers but generally am pretty good most days. I have a great sex life and feel reborn. I look better than I've looked for yrs. I had a growth removed vaginally in March and have another to be removed soon vaginally both day surgery. I have bowel issues caused by the Endo Adhesions of narrowing, pockets and ulcers at the moment which I am waiting for Immunosuppressants drugs to heal.

My best x

[Loveneige in reply to JOSANDY40]

Hi, thanks for your input. The reason for a hysterectomy is that I have adenomyosis too and am forever anaemic because of horrendous periods. I'm happy to get shot of my uterus but am not so sure on them taking both ovaries. One needs to go but it's a

The question of leaving or taking the other. I need to get used to the fact that my body will be menopausal when at the moment its nowhere near that stage.

It's the fact my body being forced into something.

I'm sure i will feel better not being stuck together inside so anything has to be a bonus!. 😊

[Ova104]

I was in same position in that one consultant wants to take both ovaries, mass and both fallopian tubes. I was like why take a healthy ovary and fallopian tube. Personally I thought this was madness. I went elsewhere 2 other opinions. Third said he wouldn't be going near a healthy ovary. They did the whole hrt thing with me too which I didn't agree with as I am estrogen dominant or progesterone deficient never know which it is. I am 53 and not fully in menopause, endometriosis all my life. HRT is not automatically for everyone either... The scan showed nothing on the left one just absolute stupid to take that out and I am not fully in menopause either.. This is my personal opinion. One things endometrioma on right, other doesn't... Why are you having hysterectomy?

[Loveneige in reply to Ova104]

Hi thankyou, what did you end up having done?I'm due for a hysterectomy because I have adenomyosis and horrendous periods. I have two endometriomas on left ovary. One large one small. My ovaries are kissing so maybe the right one is stuck to my left one 🤷‍♀️ I don't know.

Also need to see the colon consultant about the endo on my bowel.

[Ova104 in reply to Loveneige]

nothing yet. Back for another tv ultrasound July 24th they are watching my cyst which is over 7cm now. are you taking Mg, Vit D and getting enough Omega 3 to manage the adenomyosis. I had horrendous periods all my life fainting etc... only found out late 40s I had endo and then 2023 the cyst was found on my right ovary but I suspect being low in those 3 nutrients didn't help and I had low iron. I also went wheat free, yeast free, dairy free and sugar free for a year and my periods had no pain.

I am starting to take this brought out by an Irish doctor (phytaphix) will try anything because it comes down to hormone imbalance a lot of the time driving these things - just my opinion. My periods I believe were driving or are driving the whole thing but they have stopped again and hope stay stopped. I did nutritional therapy for years so would always look at nutrition aspect. Not sure what is facing me

phytaphix.com/products/endo...

[Loveneige in reply to Ova104]

Thankyou for the info. I'm low in vit d and iron so am supplementing those. Not sure about omega 3 and is mg magnesium? I'm trying to eat more healthily now. Mostly for my digestive system as the bowel endo flares up a lot. I just find the whole thing frustrating. Mainly because of the time things take to process on the NHS. I'm now waiting to see gynaecologist again and bowel specialist which will I assume take months.

[Ova104 in reply to Loveneige]

oh I hear you, everything takes time. I am trying not to panic too. Mg is magnesium and most of us are deficient in it and it also helps in stress. My doc recommended this one which I am taking, Magnesium gets burned up too with so much stress. Try not to panic as it doesn't help situation, I know it has been said to me a million times ;). I found fish oil supplements a good one really helped the endo pain and the irritable bowel associated with it. A good probiotic and a prebiotic also helped me a lot for the bowel. I did trial and error a lot.

lirpharmacy.com/products/pr...

[Ova104 in reply to Loveneige]

make sure you have the right iron supplement and not loosing iron somewhere. I was taking active iron and another iron can't think of name and wasn't worth a damn.. did nothing to raise my iron levels. All iron is not created equal.

[Ova104]

ps. I would take a rain check on having a perfectly good ovary taken out...I really questioned this in my case, there are surgeons out there that do these things as precautionary (very radical) but others that are more watch/try things etc.. I have seen that with consulting 3/4 different people.