I'm Done I Want To Ask For A Hysterectomy - Am I Being Unreasonable ?

[Middicat]

I would value your advice as DH does not really understand - and how could he I get that. I am 54 years old and suffered severe menstrual migraines through my entire 20s and 30s. I have had ops for ovarian cysts in the past and an op to check to see that I didn't have ovarian cancer 7 years ago because my cancer marker C125 was too high. Luckily it was ok. My periods have always been really heavy - in peri they were hard to manage and I had an ablation which didn't work. Not good with synthetic hormones (depression) and resisted a mirena coil. Had a copper coil and ended up in hospital with heavy bleeding. Had two shots of Provera to stop bleeding in peri. have had a total of 5 hysteroscopies and 3 biopsies for endometrial cancer because of abnormal bleeding. Following all this I stopped bleeding for a year and then started again (menopause). GP sent me to hospital where they did a scan and found lining was slightly thickened. They then did a biopsy for which I am waiting of the result. The Consultant thought it was likely to be straight forward endometrial thickening without cancer but all this freaks me out and I don't want more biopsies and scans in the future. I want a hysterectomy so I can move on with my life is that unreasonable do you think?

I think it's entirely reasonable
You sound like enough is enough

I asked for a hysterectomy this year due to having abnormal smears for the past 30 years and the Consultant said no. Apparently it is a very last resort nowadays. So, you may have to go privately for it and I have no idea what the cost may be.

Absolutely, whip it out !
I see no reason to keep something that can cause cancer when you don’t need it anymore.

Oh my goodness you most certainly should ask for one! I had one last year at 39. I had horrendous endometriosis, fibroids and adenomyosis. As I was on the young side to be having it I kept my ovaries and still get awful migraines but my god the difference in the quality of lifestyle. Definitely go for it, the recovery isn't too bad and my god the difference in having a life back is indescribable.

As pp said it is a very last resort in some trusts. You may have to strongly argue your case. Paying private was around £7,500 when I was checking in desperation.
I had to fight for 5 years -endometriosis, fibroids, such heavy bleeding I couldn’t leave the house at times, permanently on prescription iron, pain so bad it would make me vomit & co codamol didn’t even touch it-at my final appointment I sat and sobbed and begged for a hysterectomy. It was the happiest day if my life when they said I could have my op. It has been seriously life changing.
I don’t think it’s unreasonable to request one at all, I hope they agree and you can get on with your life. Good luck.

The only thing I would say is currently with covid you may have to wait a significant time before a hysterectomy. Would you consider a mirena short term?

The Consultant said if thickening of the womb with no cancer cells they suggest a mirena coil if I don't want this because of the hormone in it (depression) they would watch and wait to see if I have more bleeding in the future and do biopsies to check. She said if this goes on and on they would do a hysterectomy but 'that is way down the line' . I remember thinking oh just do it now......

Would also add with hormonal imbalance (too much Oestrogen) which causes lining to thickness (without Progesterone lost through menopause) I am seriously moody and get cross very easily and don't want that to go on forever either.

Cheesybiscuits01 - thank you for your reply. Have never got on with artificial hormones at all they make me depressed and anxious unfortunately. They gave me Provera in hospital to stop bleeding and my goodness I changed within 48hours.

Definitely go for it. You have suffered enough.

@Middicat I'm going to offer you another opinion (and I'm w health writer, having written for Patient and other similar sites.)

I understand your feelings but there is another side to it and some of your concerns are based on out of date info about treatments.

Hysterectomies are not without risk- it's a major op and can- worst case- leave women with other issues, albeit rarely.

Your periods are likely to stop soon as you are 54.

I can't think of any 'kind' way to say this (sorry!) but you are assuming certain treatments won't help based on other experiences, but that doesn't mean a new treatment won't work!

I mean the Mirena. You assume it will make you depressed but unless you try it, you won't know. And assuming it will make you depressed is a pretty sure way of assuring it will, because that's how our mind s work.

The progesterone in the Mirena is not the same as Provera. It's like comparing apples and oranges.

Likewise the copper coil is known to cause heavier periods so you can't compare the Mirena with that.

Would also add with hormonal imbalance (too much Oestrogen) which causes lining to thickness (without Progesterone lost through menopause) I am seriously moody and get cross very easily and don't want that to go on forever either.

It's not too much estogen that is causing your moods- estrogen improves mood which is why women are prescribed HRT. If you have a hysterectomy, they may or may not remove your ovaries. If they do, you would be plunged into surgical menopause and may find that 100 times worse than you are now, with hot flushes, low mood, night sweats etc, and would need estrogen replacement to help. You wouldn't bleed (no womb).

You can't make a dr give you an operation, even if you pay for it- that's not how it works. Any dr who does on op 'on demand' without trying all other non-surgical options first is not working ethically.

I can see how when your periods are likely to stop within a year or so, your drs are holding fire, want to try the Mirena and also see how that goes.

One thing worth mentioning is that a woman's weight affects how much estrogen we produce (women who are overweight post menopause still produce some and puts them at higher risk for female cancers.)

Weight is a high risk factor for endometrial cancer, both before and after menopause. Not saying this applies to you but it's worth being aware of it.

Maybe give the Mirena a try for 3-4 months, with an open mind, not expecting the worst (!) and then see how you are.

Good luck- I know it must be debilitating.

I had a hysterectomy for fibroids 8 years ago this month, best thing I ever did. If you can have it, do

I'm sure you already know this, but hysterectomy increases likelihood of early dementia and prolapsing. Should be absolute last resort. I think you would need to take estrogen to counteract dementia risk (though i could be wrong, I'm trying to remember my relative's experience), but i don't think it reduces risk completely. Not sure there is much you can do about increased likelihood of prolapse. Whatever you decide to do, I wish you the best of luck and an improvement in your health, you've clearly had a rotten time x

One other thing- are you having regular periods still? Is this bleeding a period or are you bleeding at any time ? How long do you go between bleeds? You could, just a thought, consider HRT now. It's NOT artificial hormones- modern HRT is the same as our own hormones. Provera which you had is a synthetic progesterone (short name is MPA ) and it's in some types of HRT but it's not in all. Many women now use micronised progesterone (Utrogestan) and find it great.

Tw huge amounts of Provera, which would never be used as anything except for an emergency (ie stopping your bleeding) is not the same as using other types of progesterone . (There are 4 types in all and all women find they respond differently to them.)

Your bleeding could possibly be controlled with the continuous forms of HRT which can be the Mirena plus estrogen or estrogen gel plus Utrogestan.

This would give you a regular, controlled amount of hormones, (and therefore not cause cyclical migraines which happens each month when progesterone falls before a periods).

If you are having any menopausal symptoms now, HRT is worth considering.

I'm a bit at the women here saying 'go for it' and so on.
The OP can't demand on operation! Even privately, a dr would offer other options first.

Other things like fibroids and adeno and endo are very different reasons for having the operation. They may be valid, but the OP is 54 so her periods will stop soon anyway.

As another poster has said, hysterectomies can be great but there is a risk of bowel and bladder damage .

Good luck. I repeatedly asked for one because of prolonged heavy bleeding into my 60s, but no, nothing wrong with me...they gave me a coil instead, at 63. It still gives me horrible cramps (but has stopped bleeding apart from slight occasional episodes).

I was offered mine straight away, following a ct scan

I’m always amazed at the anti hysterectomy bias here, I know how miserable it is to have heavy painful periods and it is hands down the best thing I’ve had done. Yes it’s major surgery (if abdominal, which mine was) and the recovery can take 6 months but still no regrets. I wasn’t going to faff about trying different things and spending more time in pain and with possible unpleasant side effects

As I said before, if you can, do it

I’m always amazed at the anti hysterectomy bias here,

It's not bias, it's saying how drs tend to work and why.

You had fibroids (and even they can be removed now without a hysterectomy.)

Not comparing the same thing and I expect you were much younger.

OP is 54.

I'm not sure @Middicat if this is post menopausal bleeding or you're having periods still. If you're having periods, it's normal for them to get heavier in peri menopause, (for some women) and scans aren't usually done unless someone is flooding and the bleeding is unbearable. Normally, it would be treated with drugs or the Mirena.

Biopsies and hysteroscopies are usually for women who have post menopausal bleeds, not routinely used for heavy periods.

Sorry if this is not you, but just a bit puzzled why they keep putting you through these investigations if you are still having periods.

Jinglinghellsbells thank you for your reply - I appreciate your opinion. There are however some inaccuracies there I am in fact post menopausal and this is abnormal post menopausal bleeding so removing my ovaries would not plunge me into menopause. All artificial hormones I have had in the past have caused me low mood and to be honest I don't want to take them. Even if i did have the mirena there is no saying the lining would not thicken again.

GeorgiaMcGraw

The researchers found that the women who had undergone removal of either one or both of their ovaries before menopause had a 46% greater risk of cognitive impairment or dementia after the age of 40 compared with women who had not had the surgery. The researchers also found that a younger age at the time of surgery appeared to increase this risk.

Georgia as you can see this research was for peri-menopausal women and I am post menopausal - it's awful isn't it!

@Middicat Ah- okay! Didn't appreciate you were post menopausal.

All artificial hormones I have had in the past have caused me low mood and to be honest I don't want to take them

ALL artificial hormones? Have you used a birth control pill with the same progestogen as in the Mirena?

If not, you can't say they all cause low mood.

You do need to try to be open to trying treatments and not assuming they will give you the same outcome as other totally different drugs.
The Mirena may suit you wonderfully. It's not the same at all as using oral types like the Pill and the amount of Provera you had as an injection is not comparable.

The Mirena releases the progesterone into the uterus. Only a tiny tiny bit gets into the blood stream.

What have you got to lose? At worst you might get low mood for a few weeks and then they can remove it. (It's not a one-way street!) At best, it might work and you will feel fine.

Had a partial (ovaries left in place) hysterectomy at 45 due to endometriosis and adenomyosis. For me it was the best thing. I simply was not functioning anymore with the constant bleeding and pain.

The consultants wanted to try everything first though so I went through months of endless tests, scans, biopsies, Mirena coil (left me in agony and my body ejected it after one week...), drugs to try to control the bleeding and endometrial ablation.

In the end I had enough and told the consultant I wanted a partial hysterectomy.

Sometimes you really have to push them to be heard...

Are they absolutely sure you are post menopause?

And if so, why are your estrogen levels so high that you are still bleeding? I know you said you stopped bleeding for a year but was that because you'd had an ablation OR because you were not actually post menopause and then your periods started once the ablation 'wore off'?

I think in your shoes I'd be looking for the cause of the bleeding not just the treatment to stop it. How long have they said this could go on for?

Are you overweight?

If your current drs won't do a hysterectomy, and you refuse to try the Mirena, all you can do is try to find someone who is willing to do it privately, but make sure that's for the best reasons and not because they want to make money out of you.

@Middicat Help me out here as I'm puzzled. I thought I recalled a previous thread where I'd tried to help you and I found it! I searched your previous posts on MN.

Found the one you posted last month 'I've had a period after a year' where we talked about if you were really in post meno or not- and what you posted there is not the same as this post.
You said you'd been given Prostap (not Provera.)

You said you'd had a period 12 months after the Prostap injection and asked for advice. It was possibly your own periods coming back as Prostap just delays the cycle(shuts it down) but it's not permanent. You said your GP was confused too and referred you for a biopsy and it was 4.4mm which is fine (over 5 is an issue for post menopause.) This seems different to the situation you describe here- have things moved on?

JinglingHellsBells Yes, things have moved on the Consultant said that as I there had been many months of no periods following the Prostap I was post menopausal and the heavy bleed i had was indeed post menopausal bleeding.

Enodometrial hyperplasia is not just caused by obesity (which I am not at all) but the risk can be higher is you have not had children, age and quite a few other factors.