To stop HRT or ask for a Hysterectomy - can't go on like this any longer

[VivaDixie]

Sorry this is long!

I sincerely think I want to have a Hysterectomy. I have a GP appt this week so wondering how I should approach it.

I'm 52. Have been on HRT for almost two years for Peri symptoms. I started off on the gel and tablets, didn't get on with them at all so last October went onto Evorel Sequi. I still have periods.

Problems properly started last September, I had an episode where I was in so much pain with my period that I was lying on the floor of the school car park (thankfully surrounded by lovely friends) as I was in so much agony. I then had no periods for 3 months but did have two biopsies before Xmas. The first one found that my womb lining was 5.5mm. So they did another one which found the same - no evidence of any thing suspicious but I do have adenomyosis. I was discharged from Gynae.

After the biopsies I have since had regular-ish periods but they have been horrific. Really heavy, and I am currently 20 days into bleeding - the last three days have been heavy and clotting. Tranexemic Acid isn't cutting it.

My surgery have given me an appt on Thursday with a view to another gynae referral. I am wondering if I should just stop HRT as it has never regulated my periods and I don't feel any different on it.

But ultimately I want a Hysterectomy, I have had periods for 40 years and the last year they have been horrendous.

I'm really just getting all this down in frustration, am I whingeing and will I be laughed out of the surgery for asking for a hysterectomy? I know the NHS is on it's knees but so am I.

The GP I am seeing is a trainee as my usual lovely GP is off. The benefits I think of having a trainee is that I get more time with her (30 mins) she is a woman, and is overseen by one of the Salaried GPs. So I think it may work in my favour. But I need to pull up my big girl pants and get more than 'oh well, its just being a woman'.

Does anyone have any pearls of wisdom to share? I don't want to be on my period forever and at the moment it feels like my womb is falling out of my fanjo.

Agree, you are unlikely to be offered any surgery without trying a Mirena first. And honestly it’s really helpful. Might not sort it out completely but will very likely lessen bleeding.

Dont say no to considering the Mirena

I was one of. the first it was prescribed to for horrendous periods, I was begging for a hysterectomy at 30 - childless - my gynae urged me to try the mirena first, give it a year, and if still no improvement with the bleeds and pain - he would then put me on the list for hysterectomy

It was so new I had trouble getting my GP to fund it. The hospital would fit it but they couldn't prescribe for heavy periods, my GP wouldn't fund as it was new and not proven - so a private prescription that I got filled at boots, and took it along to my Gynae for fitting

Never had another period since and had the last one removed last year aged 60

Also sailed through Peri

I was so against a coil after the horror stories emerging about the copper coil, but it really is a game changer

Another option to ask about is endometrial ablation? Made my periods much lighter.

Ablation might also be an option? It's been brilliant for me (mirena not for me)

Simply removes the uterine lining, and I've not had bleeding since

I really, really did not want a Mirena and held out for years.

It was wonderful. It stopped my excessive bleeding on HRT. The only reason I am not still on one is that it couldn't control the cell activity in my uterus, and eventually I had a hysterectomy.

I felt so foolish that I'd put myself through years of unnecessary bleeding.

@VivaDixie you may have been badly advised….if you have adneomyosis you are often better on a form of continuous progesterone as unopposed oestrogen can worsen your adenmyosis symptoms… continuous hrt or mirena hence better than sequential.

Like @Abra1t I really fought having a Mirena after a horrendous fitting by my GP a decade ago. I'm now 53 and have had four years of awful bleeding and clots. My registrar GP sent me for scans, and referred me to Gynae who sent me for a hysteroscopy with a view to doing endometrial ablation - I had little fibroids, a polyp and adenomyosis. I bled so bad at the end of October 2024 I ended up extremely anaemic and had to go on iron for 3 months.

Went for the hysteroscopy on the last Saturday of Jan - had to be a local as the wait list for general was months long. I had a spray and gas and air which I asked for and got. The hysteroscopy was actually so easy that they removed the polyp, and at one point I joked about being so off my face that they should have fitted a Mirena. Quick as a flash the tech said, well, why don't you try it, I can fit one now. I thought about it a minute, and then agreed. That was at 1000am. I was home by 11am, in bed for the weekend with a few cramps which were sorted out with ibuprofen, chocolate and a couple of films, and that was it. And I can honestly say that nearly 3 months later I have not bled at all. Had cramps for about a week but it's the best thing I could have done, and I went in there almost hysterical. It's changed my life.

Thank you everyone. The reasons I don't want the mirena is due to the pain of insertion (I can barely manage tampons and cannot do the mooncup). But I have also heard that it can take up to a year to stabilize the bleeding. Also, I have heard that it can mess with your hormones, and many other negative experiences.

I understand everyone's point about a hysterectomy. I know that's the sledgehammer approach.

I will read your posts again and give serious consideration to the coil. I would certainly need some kind of numbing to allow the GP to insert it!

I will do some mirena research. Thanks everyone, particularly @PauliesWalnuts for your honest post!

Just for info @VivaDixie I have adenomyosis and use sequential.
I agree you should not be bleeding for weeks however.
I bleed quite heavily for 2 days on sequential and it used to be painful but for whatever reason, it's not now.

Adeno is where the lining grows into the muscle of the uterus. So an ablation would only touch the surface (the endometrium) I imagine, not the actual muscle. But it's worth asking about this.

There are many other options such as increasing the progesterone. You need to see another specialist who is better! For instance, you might get on with the patch if you increased the Norethisterone (that's the progesterone in it) with a separate tablet so it's a higher dose.

Stopping bleeding is all about getting the right amount of progesterone.

But don't dismiss the Mirena. If it's needed for medical reasons, it's sometimes may be possible to have it done under a GA. It doesn't 'mess with your hormones' any more than any of the other hormones that are part of HRT. For all the negatives there are 1000s of women who love it.

What apparently made the difference to me was that because the bleeding was almost constant, my cervix was more open, so dilation wasn't even required - so this may be similar for you.
I didn't feel the coil go in at all, whereas at my GPs, it hurt so bad I actually called her a mother. I'm quite a swearer but that's not a word I ever use.

The team who saw me do hundreds a year, were very experienced and were very kind, and stressed that they would take the lead from me and if I was uncomfortable at any point they would stop. So, I had two biopsies, photographs, a polyp removal, and a Mirena fitting, and thanks to the gas and air (which to be fair, I chugged at like my life depended on it!) I hardly felt anything.

Honestly I read up on all this and saw a GP and gynae. I stopped the hrt (though am a big fan) as I wanted to see what was going on with my periods without it. They completely stopped. Bliss! I might go back on a dif hrt in the future but not in any rush

I have adenomyosis and had similar and sometimes worse issues than you and so I can totally feel your pain. I wonder why the doctor has put you on hrt as my gynaecologist told me that estrogen would certainly make my specific situation (adenomyosis plus pcod) worse.

He did convince me to go on Mirena. I was scared too but mine was done under general anaesthetia. I was undergoing surgery for cyst removal so he thought that would be the best time to get it done.

I was told the best next option was progesterone only pills and I am sure you can get it at your age.
If nothing works then go for hysterectomy and you don't need a lapratomy nowadays so it's fine but it's still a major surgery.

I would also advise to get a gynaecologist referral now as the wait is quite long. You can try the pill in between and if it works then you can always cancel your referral.

Interestingly I watch an interview recent with one of the uk's top menstrual migraine specialist. She was saying that if you are still having regular/semi regular periods then you shouldn't be offered HRT. It was only ever designed to be given to women who had already stopped menstruating or who periods where very spaced apart already.

That treating heavy periods in premeapusale women should be done with birth control. I'm 48 and on the mini pill, I went back on it because of painful heavy periods and it's been definitely the beat decision.

I've always had extremely heavy periods and extremely painful. Got worse after kids. I passed out from pain at school and work. Last year I was repetitively having iron deficient anaemia. The GP suggested the coil but I didn't want it. She then suggested mini pill. It has been amazing for me.

Oh, OP, I empathise. I have similar issues (not quite as severe as you describe). I am older than you , just, and still have a monthly bleed , even on continuous HRT. Nothing seems to stop the bastard.

My period is accompanied by terrible nausea, indigestion and stomach cramping.It really is debilitating. I am due yet another scan and anotehr biopsy for no real apparent reason.

Yes - you can take the mini pill at any age, it’s not like the combined pill where they don’t like you taking it past 50 (combined has oestrogen in it which has an increased risk of clots, mini pill is progesterone only so no risk of clots - you can add in transdermal HRT to get oestrogen if you wish as transdermal - patches, gel- has no risk of clots).

I had a hysterectomy 2 years ago and have never looked back. They can do keyhole surgery now with a much shorter recovery time. Don’t dismiss it.

Thank you so much everyone. You have all given me so much information to read up on before Thursday.

I have only recently been diagnosed with adenomyosis and was on her for 18 months beforehand.

I will look into various options: the mirena, or mini pill or a break from hrt for a few months.

Thanks again, this has all been really useful

I did wonder this. I honestly think my periods have got worse on HRT. Hopefully stopping will at least let me see where I am without the HRT. If it's still bad then I could try the mirena

I had an ablation done on my womb. Life changer. Might be worth asking for one.

Taking HRT when you have adenomyosis can cause heavier bleeding so maybe look into this?

I am really starting to think this is the issue!

So I have just completed the first two weeks of this monthly course, tomorrow night I go onto the progesterone patches for two weeks. I am wondering whether to finish this monthly course so I get the two weeks of progesterone then not take the next month.

Obviously I will run this by the GP on Thursday but I have pretty much decided I won't start the next box of patches

@MigGril

It was only ever designed to be given to women who had already stopped menstruating or who periods where very spaced apart already.

No, it's not.

Some GPs still say this and it's incorrect. There are 2 types of HRT for women with periods and women with no periods.

The Migraine Trust (charity) has a section on migraine and HRT and it definitely does not say what she was.

HRT isn't 'used' for heavy periods - it's for menopause symptoms, and using the Mirena as part of HRT can help heavy periods.

I'd give up HRT if it weren't for the night sweats and constant nosebleeds I have without it.

I confess to struggling with Mirena insertion / removal, it's hard. I had my first under GA - that was easy. It also took 6 months to stop light bleeding. But STILL I wish I had had it sooner! I suffered decades of heavy bleeding and flooding, once settled, I could have avoided that with the mirena.