bilateral oophorectomy at 34

[HomebodyFig]

Hi all,

I am looking to hear from real people (you folks on this forum) about your experiences for a bilateral oophorectomy.

I have been suffering with debilitating endometriosis symptoms for more than a decade and on Monday March 4th I saw a consultant about my treatment steps. She was the surgeon that performed a laparoscopy in November 2023 and asked how things have been since the operation. Well, they’re terrible. I’d say I feel worse since the operation and coming off Zoladex (I was on Zoladex Aug-Nov 2023).

She then suggested we look at either going back and trying hormonal treatment again. Which I said no to. Last time was horrendous and I was so depressed I wasn’t able to function. Then she said the only things left are

1) long term Zoladex use. Or

2) bilateral oophorectomy

Since I’ve done the Zoladex I know what to expect. Does anyone have any advice/ help/ experience they’re comfortable sharing of bilateral oophorectomy in the mid- 30s? I’m really nervous about the long term effects. Not worried at all about surgery. Just would like some clarification on the dementia, osteoporosis, depression etc risks. I’ve done so much reading but none has been from people, lots of medical articles and such but I think talking to real people will help me to understand a bit more.

Thank you in advance.

xx

[BattyForBats]

Hi, sorry to hear what your going through. Although I'm 42 in January I had a full hysterectomy, everything out and done via lap. I was given a 6 week sick note.

Well this is my sixth week and apart from still not knowing my limits before totally tiring myself out and bringing some pain, I feel totally ready to go back to work.

Time will tell if its totally got rid of the endo as I have some on my pouch of Douglas which I am still waiting to hear if they were able to remove.

As for other side effects, I'm making sure that I get enough calcium, and keeping an eye on my depression and anxiety (which I've had for a long time so know when they are about to kick off) as well as keeping my mind active.

The only piece of advice I can give is that you know you best, don't be pushed into something you know is not right for you.

Hope I have been of some help.

[HomebodyFig in reply to BattyForBats]

Hi, thanks for your reply. Yes it was helpful. I guess part of it is there’s just not enough information out there for me to feel like I can make an informed decision. I am about to start Zoladex today (sat in the waiting room at the drs) and I am really thinking about why I am doing this all again.

But I’m going to see how I get on for the next 6 months and do more research.

It’s crazy what we have to go through. It’s not a new disease, it shouldn’t be this difficult.

I’ve also gone online and bought supplements as well, thanks for that. I didn’t even really think too much about it. But it makes sense, giving my body the best chance.

I hope your journey isn’t too stressful. Xx

[candyk1d]

My ovary removal was year after Hysterectomy....so a different set of conditions...removal was because of major adhesions following hysterectomy...I did point out a problem within a week but was told it was healing process....Anyway end result aged 44 they removed the ovaries and explained that a hormone implant was in place as it would be an instant menopause....after only two weeks this very confident and outgoing person was a wreck...told by consultant it was due to recovery, but it got worse....went to my gp who laughed and said because I was young the hormone supplied was used up very quickly , put me on hormone relacement tablets and I was back to normal in no time..bit long winded explanation but hope you don't put up with it, I did and gave myself 6 months off work because I couldn't face people, answer phones etc.go out.good luck....

[NatureNymph]

I had an ovary removed 15 years ago due to a huge ovarian cyst. I'm 51, but had hit menopause early at 46, due to only having one ovary and went onto hormones due to hot flushes, terrible sleep and anxiety. However, I wasn't warned about the pill version being a greater risk for blood clots and I experienced a bad groinal blood clot putting me on blood thinners for 3 months. I was then not allowed hormones again. I was experiencing hot flushes, low mood, anxiety and generally felt like I was just existing and my doctor encouraged me to try venlafaxine, which is actually an anti-depressant, but particularly good for hot flushes and obviously low mood. I was resistant to anti-depressants despite being a therapist and knowing how they do really work. They got me back! and I felt content again.

Then after accidentally discovering a cyst and a load of endometriosis at 51, I had the other ovary removed just before Christmas with as much endo as possible without cutting into my bowel (my choice to leave that bit in case of permanent stoma). I have recently realised the lowest dose of vanlafaxine I'm on needs to be increased, as now I have zero hormones coming from my ovaries, it's obviously having an effect and I'm back to feeling low again.

Anyway, as a previous nutrition coach, I know about all the risks about long term effects on brain, heart etc although there are also different schools of thought on it. What I will say is, your priority after surgery is your mental health, as immediate menopause can cause you to experience the low mood or even depression with hot flushes lack of sleep etc, so it's important to be aware of that. If you are able to and are comfortable with it, I would recommend hormonal gel and ask for a bio identical version (as close to our own hormones as possible) to help you get through the immediate elimination of hormones and maybe for longer term use if you're comfortable. Your consultant and or GP should be on this after the op, so ask them about it if you don't get the info.

Also consider taking calcium, zinc, magnesium, cod liver oil, vitamin B complex, which all help to reduce menopausal symptoms and look after your bones and heart.

Look up Diane Danzebrink who is a menopause expert and has a great support website called Menopause Matters with help and resources and know that there are menopause coaches out there who can prescribe as well if need be and you get stuck somehow. GPs are getting better, but depending on who you have, your experience may differ. Don't be left thinking one opinion is the right one and if one hormones doesn't work, there are other options as well as anti-depressants (don't get hung up on the latter's type of drug, they are all drugs to help and can be used long term).

All decisions are down to you, but be ready to ask for help when you need it. It's easy to leave it and get stuck in a rut.

Good luck, look after yourself, use your instincts and I hope everything goes well.