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 had this, although not your horrendous bleeding, the nurse suggested giving continuous HRT a try - I'm on Evorel Conti. I now haven't had a period for about 10mths, fingers crossed.

I agree with the part about hrt not being first line treatment for heavy periods ( I had the mirena alone for a few years which worked perfectly) but the rest is not correct, there’s a huge list of perimenopausal symptoms (apart from heavy periods) that are down to decreasing oestrogen that benefit from HRT and the bio identical transdermal methods of delivery are safer and have lower risks than the pill. If I wasn’t on hrt I’d be popping multiple pain killers every day, hrt is the better option for me.

I still have mine...

But what happens when you are still having periods well into your 50s or you have never tolerated birth control pills. I hate to think of the state I'd be in if I'd been refused HRT.

You shouldn’t still be bleeding on a continuous regimen. Worth reviewing if you are.

I am just regarded as not yet in menopause. They don't seem bothered. It was made continuous because I wasn't reacting well to various products so it was to spread it over the month instead of having the gap. I do plan on seeing our HRT nurse but she works every third Thursday and is booked up for months. I tried taking more progesterone but the side effects weren't good.

Just to add my experience here.
Bleeding stayed erratic and prolonged on hrt, so I am on continuous progesterone not sequential, and also had one of the newer mini pills added in.
I've had months without and bleeding at all really (just the odd spot) until this last few weeks where it's something between spotting and light bleeds most days.
This is possibly in part due to stress and ongoing hormonal fluctuations.
It's annoying but manageable.
I too have adenomyosis, but lining mm was okay.
It was meno specialist that has sorted my regime and referral to gynae to scans.
I'm almost 46. Been in peri at least 4/5 years, over 2 years since I started hrt.

Thank you everyone, I had my GP appointment and she was lovely, very sympathetic.

I have been referred for another scan and blood tests and a follow up in 2 weeks to discuss options.

I am really grateful for all your input as I am now seriously considering going for the Mirena.

Good luck with the scans and bloods. I hope you find what works for you. Be persistent and don’t give up!

Sorry I should have been more specific, she specifically said progesterone only contraception. Not the combined pill.

Your right that there are newer bio identical oestrogen which are available, they talked about these to. But HRT is still really only designed for those who's periods have become very irregular or have stopped. If your still having regular periods it's not the best solution.

I was having hot flushes as well as heavy periods and the mini pill solve both issues.

But HRT is still really only designed for those who's periods have become very irregular or have stopped. If your still having regular periods it's not the best solution.

This really isn't true. You've been given the wrong information.

Are you using topical oestrogen too? Obviously challenging to apply if bleeding is frequent and heavy, but it may restore the skin of the vaginally enough to allow a Mirena to be inserted.
I would personally want to do everything I could to avoid surgery to remove any if the pelvic organs.

I had this same issue on Evorel Sequi - what was meant to be a withdrawal bleed lasted weeks, I also bled at various times during the month and passed clots so big and disgusting, I’d thought the same as you, just get rid of the whole thing.

GP switched me to Evorel Conti (continuous hormones, no withdrawal bleed) and it all stopped immediately. Has been liberating!

Hi everyone, I wanted to update you all as a lot has happened over the last 7 months.

I was right that seeing the trainee GP was to my advantage as my consultation was longer due to her trainee status and supervision etc. So i made use of my full 30 mins, then she consulted afterwards with her supervisor.

I had my Gynae referral, my GP did it under the 2WW even though she was almost certain it wasn't cancerous, she just wanted to make sure i was seen quickly as i was suffering so much - she was an amazing advocate.

The consultant I saw was great, he talked me into having a mirena coil fitted - I also was guided by the amazing advice I had on here so I went for it.

Unfortunately, when he was inserting it I went into toxic shock. It seems my cervix is really tight (explains why i struggle with tampons, cannot use mooncup and sometimes find sex uncomfortable). It was terrifying, i literally felt the blood rushing from my head and felt completely out of it. He removed it immediately and put in my notes that I should never be offered a coil again.

So that rules the coil out!

I took myself off HRT and that has solved it. I have had one small period since May and my life is so much better. The consultant phoned me a couple of months ago to see how i was and he said that was the best course of action and he has written to my GP to say (a)don't offer the coil (b)never prescribe sequential HRT again - i must always go on continuous.

Thank you everyone - reading my posts from April make me sad that I was going through all that - it was an awful time and i never want to go back there.

So for not it's full on hippy - no medication - just vitamin supplements and fresh air!

Thank you everyone = I truly appreciated and took on board all of your advice

He did say that if stopping the hrt didn't work he would have put me forward for some kind of surgery - prob Hysterectomy

Glad you seem to be doing better and sorry you had such a scary experience with the Mirena. It would be wonderful if one day they could work out a better way of deciding the best option for each individual perimenopausal woman would benefit from - feels far too much like trial and error!

Thank you @UnaOfStormhold I agree - I was prompted to update this thread after reading the one about the poor 15yo girl who is currently really suffering, I feel so sad for her that she is beginning this journey and I am hopefully at the end of it.

I really think women's menstrual health needs so much more individual consideration and more than just either 'get on with it' or 'try a mirena' (I fully appreciate that the mirena has changed many women's lives but i will never go there again)

I have heavy bleeding and adenomyosis in peri. I did not want the Mirena which is recommended so am taking Slynd progesterone mini pill and it's done an amazing job