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[Peri2022]

Hello lovely people. I’ve finally (after 18 months) had my gynae appointment to discuss painful and flooding periods. After years of distress, a failed IUD insertion and now HRT, I’m so done with my womb. I want it out!

The doctor was fairly accepting of my decision and she urged me to think very carefully about whether to remove my ovaries or not. I do have a 4cm fluid filled cyst on my left ovary which looks benign. I am kind of thinking that I’d rather keep my ovaries so as to at least maintain whatever small amount of hormones they’re still making…but then obviously removing your ovaries means you have no risk of ovarian cancer…

Now I’m confused! Would love to hear from anyone who has faced this choice. What did you decide and why? Thanks in advance, you are all always so kind and helpful.

PS the waiting list is about 2 years so I have a long time to mull it over anyway!

[CLKD]

My Gynae consultant offers women removal of ovaries at the same time as hysterectomy so that he doesn't have to operate again should there be problems.  Me, although not having been faced with such a dilemma, would keep my ovaries because even if removed, a small stump may be left behind which can still ooze oestrogen  .

It may well be due to age too.  MayB consider having a blood test relating to ovarian cancer, as well as looking at 'ovacome', the ovarian cancer support group.  Ask away.  Make a list of your worries.   Let us know how you get on.

[Nas]

Hi Peri
Well , if it were me, I’d want everything gone in one swoop. The less reproductive organs, the better. Less to go wrong, less to worry about etc etc.

Of course it’s your decision entirely, but having your ovaries out, would mean that you wouldn’t need to think about cysts etc developing into something more sinister.

It may mean that you have to take a higher dose of HRT perhaps, but for peace of mind, wouldn’t that be worth it?

I’ve got a gynae appointment next week re: post meno bleeding. I’ve got a fibroid outside the uterus, a bulky uterus and god knows what else in there. I can’t take HRT comfortably as the oestrogen aggravates the womb / fibroid whatever. I want a hysterectomy as I’m sick to death of “ issues” in there. I am 52 and do not need any of it now.

I’m sure the lovely ladies on here will share their thoughts with you and help you make a balanced and informed decision.

Good luck!
2 years waiting?? Crikey.. that’s a long time!

[Peri2022]

Thanks CLKD, you’re always very helpful. I too am tempted to retain any possible oestrogen-oozing stump  I feel like a bit of a stump myself these days!

I had not thought of looking at Ovacome but that’s a great idea.

I suppose my main worry is that I’m plunged into full oestrogen deficiency and the depression I had pre-HRT returns with a vengeance.

Lots to think about!

Also thanks Nas - your reply came in as I was typing this! I can also empathise with the feeling of wanting everything out. When I listed my tale of gynae nightmares and told the doctor ‘I’m out’ in no uncertain terms, I think she was a bit taken aback! I’m not opposed to taking a higher dose of HRT if I need it but I have to admit the thought of a mental health relapse (brought on by binning my ovaries) terrifies me. Oh to be a man!

Sounds like you have a lot going on. I really hope you get some answers too.

[CLKD]

Lots to think about.  Quality of Life first?

Also, once you've made your decision, to be discussed with the Surgeon - could you opt for a cancellation app if someone doesn't turn up on the day?  You would need to be packed ready and starved from mid-night but if the Surgeon is aware, it means that the slot isn't lost .  We did that a lot in Orthopaedics when patients didn't turn up, having them on 'standby' until 11.00 a.m. when they could eat. 

How good will the HRT be?  Does everyone require HRT after?  Would it be wise to take anti-depressants prior to surgery? 

[Wrensong]

Hi Peri2022, I was advised to have both ovaries out several years postmenopause due to an iffy looking cyst they suspected was nasty.  The only way they could be sure was to remove the ovary & I was not given the option of retaining the other one.  I'm assuming they've done a ca125 test for you & that's come back OK?  They wouldn't take my uterus at the same time as the BSO & given I was already postmenopause the gynae felt the op would not have any adverse long term effects as regards loss of sex hormones.  I felt the sensible decision was to agree to the surgery & the op was fast-tracked.  Luckily the cyst turned out to be benign. 

I was without HRT for a year afterwards & during that time my GSM, systemic dryness & pelvic floor function declined & my night sweats & insomnia continued to be very problematic.  Resuming HRT helped to some extent, but progesterone intolerance was a major problem until hysterectomy several years after BSO.  I still struggle with insomnia.  I should perhaps say I have a thyroid condition that's difficult to manage which complicates the situation & perhaps makes my experience less typical, but hopefully this doesn't apply to you.

The choice over whether to keep your ovaries is a difficult one, especially as they go on producing a useful amount of testosterone for us well into old age.  If you eventually decide you'd rather have BSO as well as hysterectomy, you can ask to have T added to your HRT if you're not taking it already.  I did find this beneficial.  You're naturally concerned about possible resurgence of depression from any further drop in oestrogen post-op but if you're of menopausal age presumably it won't be long before your ovarian production of oestrogen is negligible, so optimising replacement is something you will anyway be up against.  Depends how far through the transition you feel you may be now I guess.  Can I ask have you been given the option of retaining your cervix & if you are intending to do that are you OK on progesterone, just in case you need it with the cervix intact?

As you have time to consider things carefully I would read around as much as you can & maybe have a look at Surmeno website or Hystersisters.  Being free of the horrible problems of bleeding & pain I'm sure will be very liberating for you.  It's been a Godsend for me as I had very heavy progestogen withdrawal bleeds that made me feel very unwell each cycle & depleted my iron stores.
Wx

[Peri2022]

Thank you Wrensong. I will have a look at Surmeno and Hystersisters. Aren’t we lucky to have social media for these things?

A ca125 test wasn’t mentioned, just another scan at some point to track the cyst. The doc didn’t seem worried as it was 4cm and fluid filled in appearance. I think this test is used more routinely at this stage in England, and I’m in Scotland. I could pay for it myself…I wonder if it’s worth it?

Anyway thank you for sharing your experiences, everything helps!

[Wrensong]

Agreed, we are lucky to be able to compare notes at the touch of a few key strokes  .

If they don't think the CA125 test is necessary I think I'd be inclined to trust their clinical judgement.  My understanding is that it's one that can sometimes give a raised value if various other conditions are present, giving a potentially misleading picture.  If they are proceeding on a watch & wait basis, rescanning as they did with the 2 cysts I had over the years, any changes should be picked up.  But if you'd find it reassuring to get the CA125 done privately you could look into that.

The matter of whether to keep the cervix is another I would research, if you have that option.