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.

I stopped hrt at 52 and my periods stopped. It was definitely keeping them going

That's interesting thank you, I am thinking of that being my less dramatic solution. Just hoping that works. As I say, my periods have never aligned with the withdrawal bleed on HRT anyway.

Have you considered an oophorectomy (ovary removal)?

If you remove ovaries you are instantly in full menopause (no on-off symptoms etc). Much smaller surgery, day procedure, one day off driving etc.

Hysterectomy is major abdominal surgery, pelvic floor muscles need to be detached and reattached.

Just another thought on how to manage - after oophorectomy the lack of hormones shrinks uterus, and obviously no more periods.

I have not heard of this procedure - thank you! That is something I can look into and discuss with Gynae. It certainly sounds less invasive.

It's always best (IME) to go to the GP with what your symptoms are and how they are affecting you, not what you want. They do often ask what you are hoping to achieve from the appointment as well but start with describing clearly the issues you are having and the impact of those on your life. Make a concise list if helpful.
Either way, a GP is not going to make decisions on hysterectomy, a gynaecologist is, so a referral to a gynae is what you want.

Yes I am aware of that - maybe my post was worded in a rush. My question should be how I broach this with Gynae. But I also want a Gynae referral.

When I went to Gynae last it was a guy who was more focussed on telling me that I didn't have any cancer rather than how to manage my symptoms. I need to work out how to approach it differently this time.

Hi @VivaDixie
I'm a bit confused by your thread.

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.

If you're using sequential HRT (progesterone for half of each month) you will always have a withdrawal bleed (even if you take this type till you're 90.)
It's not your own period if it's coming at the same time each month.

Has no one suggested you have the Mirena coil? This will often stop the withdrawal bleed and you can just use gel or an estrogen patch with it.

It's an HRT-induced bleed- so the way forward is to find a type of HRT that won't cause excessive bleeding.
This can be a lower dose of patch or gel, and the right form of progesterone.

That is definitely worth a try, Viva. In your place I would go for that and see if periods stop.

It's not a withdrawal bleed. My bleeding never aligns where it should do on the HRT cycle. It also shouldn't be lasting almost 3 weeks with heavy bleed and clotting.

My GP did mention a mirena coil but for various reasons I don't want this.

I’d try stopping the HRT and waiting six months before making any decisions. The HRT could be masking symptoms or causing them.

Thank you. I think that's certainly the first stage solution.

I would like to know what's causing the clotting though. Maybe stopping HRT with a consultation with the Gynae is a good start.

Yes I agree. Thank you.

You mentioned you take tranexemic acid, you do know it reduces the bleeding by increasing your clots?
https://www.nhs.uk/medicines/tranexamic-acid/common-questions-about-tranexamic-acid/

Have you tried the mini pill? My periods were horrific and I was doubled over with them, it helped massively.

I wouldn't considered oophorectomy a lower impact surgery - there was some research that found women who had oophorectomy with hysterectomy had worse outcomes than just hysterectomy - there's a chapter in The Menopause Manifesto that talks about this.

I would definitely consider continuous HRT (evorel conti etc) or a Mirena coil (which stopped my periods entirely) before surgery.

Ah. I hadn't realised that. Thank you.

I bled terribly on patches then on gel - heavy bleeding (including big clots) daily with almost no respite, and pelvic pain that was sometimes really crippling. I became anaemic due to constant blood loss, and then once iron tabs got the anaemia under control, I had a lot of gut problems from the iron. It's no fun, is it?

I had a hysteroscopy and scans to find out what was happening and found out I had a fibroid in the wall of the uterus.

I then had a mirena (which I really didn't want) for a while and the bleeding stopped, but then it was dislodged by the fibroid.

The gynaecologist was great at talking through all the options.

An earlier poster is wrong about hysterectomy - it doesn't have to be abdominal. I had a total hysterectomy (womb, ovaries, cervix out) and it was laparoscopic (keyhole) rather than abdominal. I was in and out same day, and recovery was very straightforward. (I was tired for a couple of weeks but back to normal very quickly, except the new normal meant no bleeding!) I don't regret for one second. I still use oestrogel and have no intention of coming off HRT just yet. (I'm 53).

I put off the hysterectomy for ages as it felt so seismic, but it was totally right for me. No more pain, bleeding, gut problems.

Thank you everyone who has commented and advised. Lots to think about.

I'm reluctant to try the coil and not sure if the pill would be right for me at 52. However I do appreciate all the suggestions.

I think certainly stopping HRT and seeing how I get on is a good start

Another post for the mini pill - have you tried this? Either alone or as part of the HRT? I have horrendous bleeding issues due to lupus etc and I have the mini pill and HRT patches and have no bleeding now whatsoever. At one point it was so bad I was having all kinds of investigations for it.

Oh that sounds horrendous for you, I am so glad you had the right resolution for you. And no more bleeding and pain!

Our stories sound similar so I will still discuss the option. I just can't go on with almost constant bleeding. Whilst the tranexemic acid may cause blood clots it shouldn't be persistent like this.

Thank you, I wonder if they would give me the mini pill at 52 🤔

One difficulty you're likely to face is a horrendously long wait to see a gynae consultant and then a further wait if they do agree to surgery. Gynae has some of the longest waiting times of any area of medicine, unfortunately.

I had terrible debilitating heavy and painful bleeds throughout peri, was recommended a mirena but didn't want one, said no for years - then finally a consultant convinced me to try it and it has been life changing. Hardly any bleeding, no pain, I wish I'd done it years ago. Had two now, very happy.

I just wouldn't rule it out, OP. Especially if the alternative is waiting for months or even years for surgery.

I know you've said you don't really want a Mirena, but I had the same issues as you with awful periods, really heavy and extremely painful. Obviously I don't know your reasons for not wanting a Mirena as you've not shared them, but just to share a positive story, switching my HRT to a Mirena and an oestrogen patch has literally transformed my life. I don't bleed AT ALL anymore, no more pain, no more tiredness.

At least talk it over with your consultant before dismissing it in favour of surgery. My gynae said me having a hysterectomy would be like taking a sledgehammer to the problem when there were much less invasive solutions to try first (i.e. Mirena, mini pill).

If the bleeding is the main issue, has no one suggested endometrial ablation? Much less drastic and invasive than hysterectomy, removal of ovaries and so on.

https://www.bupa.co.uk/health-information/womens-health/endometrial-ablation

IME gynae will offer you a Mirena coil, or potentially GNRH analogues such as Zoladex first.

Hysterectomies are rarely done for menorrhagia now, especially in perimenopausal women who will stop bleeding soon (hopefully!) anyway. You can certainly ask to be referred back to gynae to discuss your options.