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Surgical menopause and the Mirena coil

(10 Posts)
GirlDownUnder Sun 01-Feb-15 06:36:13

Due to a high risk of ovarian cancer, at (nearly) 44 I'm in discussions with my doctors about best prevention methods. I'm fairly sure I'm going to go with just overy removal - with the possible risks and complications I don't think getting rid of my uterus and cervix is really necessary.

However, keeping my uterus without overies brings other issues - I need to have progestogen to protect the lining of my uterus from overgrowing and developing precancerous and cancerous changes.
One doctor has recommended the Mirena coil, fitted at the same time as the surgery to remove my overies.
I'd use patches for the oestrogen to complete my HRT needs.

My dilemma is that I have read up on the possible negative side affects of the Mirina coil, and I really don't want these as the affects from surgical menopause will probably be brutal enough!

So, do I look / ask for another progestogen delivery method, do I remove my uterus and not have these issues (but take the risk on vaginal prolapse, loss or change of orgasam, bigger op, longer recovery time, blah), or try the coil and see what happens?

I'm info overloaded but with no female relatives / friends to get a personal perspective from I'm really hoping someone with any rl experience with the coil / surgical menopause, or anything else they think relevant, could give me their opinion / experience I'd really appreciate it.

Don't know if this is relevant, but just in case; I'm married (v supportive and understanding DH) and no kids (by choice).

Thanks for reading smile

pinkfrocks Sun 01-Feb-15 08:39:35

Sorry you have to make such a hard decision. I suppose the first question is- have you had more than 1 opinion on the notion you need your ovaries removing? It's a pretty drastic step. Is your risk hereditary? Can it not be managed with regular annual scans? Sorry if this has all been discussed.

I don't have that kind of experience but my consultant offered me the coil as part of HRT, using oestrogen gel. I decided not to go with the coil because I have slight irritable / overactive bladder and any progestogen makes it worse ( used to notice that in the 2nd half of my cycle.) So I went with gel and progesterone tablets.
Some people get on great with the Mirena and it's considered the gold standard combination if you can tolerate it.

Have you thought about trying it and if it doesn't suit you after say 3-6 months, having it removed and using oral progesterone instead?
I know this doesn't answer the question about risks of hysterectomy but TBH anyone who replies will only be able to give their experience- it will vary! I suppose you choice is do you want to be on meds long term ?

GirlDownUnder Sun 01-Feb-15 10:29:55

Thanks Pinkfrocks. Yeah the risk is hereditary - sadly at 43 I've already out-lived my mom (ovirian cancer) and maternal aunt (breast and overian cancer). Both were premenopausal and a v short timeline from diagnoses to death sad
At 35 I was offered a total hysterectomy with oophorectomy (ovaries removed), and a double mastectomy shock so I guess I've been thinking about this for some time.

My current doctor offered 3 options
- screening only for a few years (but surgery would be more strongly recommended later as age increases risk)
- total or sub-total hysterectomy or
- bilateral oophorectomy
They are not too worried about the breast cancer risk as early detection / survival rates are good.

So, I'm leaning toward the bilateral oophorectomy so I don't have the same risks as the hysterectomy, but I've read some horror stories re surgical menopause and some even worse horror stories re the Mirena coil confused

I guess I'm trying to weigh up options, and a crystal ball would be lovely smile

How did you get on with the progesterone tablets? Do they have the same side affect risks as the coil eg depression, weight gain, irritability, mood swings, etc or are those managed with gel?

pinkfrocks Sun 01-Feb-15 11:15:34

I'm sorry to hear about your mum and the family link.
I wonder why they would only be willing to screen you for a few years? Is this an economic decision? Are you in the UK?

How many specialists have you seen? I've heard about so many different opinions from consultants on all kinds of issues that it's good to get at least 2 and possibly 3 opinions. Do you have this option even if you had to pay for a private consultation?

I know someone ( old friend though not a close one) who is offered annual scans and the C125 blood test.

There is no doubt that your symptoms will be severe after a surgical menopause. Re. the hysterectomy, you could leave the cervix to help protect against vault prolapse but there appear to be different opinions on whether women need progesterone with a cervix only- some drs think there may be endometrial cells present in the cervix.(I've read about this on other forums!) This is where you need specialist advice.

Re. HRT. Women on oestrogen-only HRT have fewer cases of breast cancer. That may be a big consideration.

There is some thinking- not been proved but my gynae goes along with the thinking as far as they can tell from the stats- that a combination of oestrogen and synthetic progestogens give the highest risk of breast cancer. The lowest risk seems to be from oestrogen-only, or oestrogen plus bio-identical progesterone ( Utrogestan or micronised progesterone) and in your shoes if you were to take any it ought to be that one. It's probably safer than the Mirena as the Mirena is a synthetic hormone.

I don't have any weight gain with the Utrogestan, but I am on a closely monitored regime of an 6-8-week cycle, so only use if for 10 days every 6-8 weeks.

I hope this helps but I really do think you ought to shop around if you can for more advice before you make your final decision.

GirlDownUnder Sun 01-Feb-15 12:09:49

Thanks again Pink, you've certainly given me more to think about - but in a good way.... oh and more questions for my docs grin

I'm in Oz now, but was offered radical surgery whilst I lived in the UK. All my consults, etc are private, and my gynae has no issue with scans bi-annual or annual but age increases the risk of ovarian cancer so at some point surgery would be my best option as prevention. Unfortunately we can't do genetic marker tests cos my mom died in America and my aunt in Africa and we couldn't get blood or tissue samples.

I've seen a couple of drs. now and the firsts' preference was to remove ovaries and total hysterectomy because in his words the uterus is 'tricky' without the ovaries - I now realise he was referring to the issue I'm weighing up re progesterone hmm but when I pushed more he agreed that leaving the cervix wouldn't be an issue.
Second says there are no issues that can't be managed with HRT so agrees ovaries only is a good option.
Neither are worried about the cervix and they know each other and will work together re aftercare and getting an HRT solution in place pre surgery.

Until I read up on what part a uterus plays in orgasam, I was all for taking it out, but I am worried about a loss of sensation - ridiculous I know when I'm looking at options to reduce a cancer risk!

So maybe I need to think more re uterus - is the 'hassle' of keeping it really worth it?? Harder surgery but less to worry about later, and until it's done I've no idea if it will effect orgasam (too late after tho). And like you say, the cervix would help re prolapse and oestrogen only is better re breast cancer, so all in less drugs, screening, further risk, stuff!

Talking is helping so appreciate you taking the time to help.

pinkfrocks Sun 01-Feb-15 16:54:53

There is a website called Hystersisters so maybe read / join that to ask about the effects on orgasm?

Hope you find some answers- no solution is risk /hassle free-at least with HRT you know the outcome ( to an extent) and I suppose a total hysterectomy is an option further down the line- though it would be a 2nd op.

Floundering Sun 01-Feb-15 17:13:01

I think the thing you have to bear in mind is that nowadays even the rarest of side effects/complications are reported and (quite rightly) the docs have to pass these on. But statistically the benefits outweigh the risks when done for other reasons, for you its not that you are suffering NOW but you might in future so I can see your dilemma.

Personally if you are considering ooprectomy I'd go for the lot out (leaving the cx) to save hassle/further surgery later, but I was a gynae ward sister for some years & would always recommend it!

HRT is so much more varied these days you will be able to jiggle the doses & type around to get the best cover for you & the lack of worry about your future health would outweigh any other worries I would imagine.

Good luck whatever you decide!

GirlDownUnder Mon 02-Feb-15 00:34:46

Thank you both for your thoughts.

Pink I'll have a look at that website, thanks for the recommendation smile

Floundering I'm def going to have an ooprectomy (prob sooner rather than later) it's the recovery (time, shock to the system, surgical menopause affects) that's making me hesitate to get it all done together. Maybe you could help me here - as your time as a gynae ward sister, did it make much difference, do you think, going through both ops at the same time ie was a patients recovery easier just having an ooprectomy or does it not make much of a difference?

My doctor has said if I'm even considering removal of the uterus to do it at the same time, rather than 2 surgeries.

I'm now more leaning toward the ooprectomy and sub-hysterectomy after talking here to both of you and the fact my periods just started and I feel yuck so thanks again.

TealTiger Sat 21-Oct-17 13:46:32

I know I’m late to this convo....did you have genetic testing to see if you have the gene mutation? I have a family history of ovarian cancer. I was tested for having the BRCA gene mutation however my sister is negative. I’m 42 and I had my ovaries and tubes removed 3 months ago with the Merina IUD implanted during surgery and I’m taking estrogen for HRT. I’m experiencing some side effects (weight gain and acne) I hope you are doing well.

BG2015 Sun 22-Oct-17 09:13:29

I had a hysterectomy in June, it was done by key hole and I was dreading it. I’m a regular gym goer, avid walker, busy job with 2 teenage boys.

But in all honesty it was the best thing I’ve ever done. My recovery was quick and I was back at work 6 weeks later (probably could have gone back at 5 weeks) and I was back in the gym after 8 weeks.

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