Heavy Bleeding, Uterine Fibroid Embolization, Hysterectomy??

[Thejoysofaging]

been suffering with heavy and prolonged bleeding for nearly 2 years now. Not sure I really have a cycle as I seem to bleed most of the time with only a few days off each month. The clots are horrendous. Every month I have one the size of the palm of my hand, and then lots of others around that time which are big (like 3x4 cm). Also sudden gushes where the blood just pours out of me. Lasts for a couple of hours and then nothing for the rest of the day. Had mirena coil - but I keep expelling it due to bleeding. Got some 2/3 small fibroids (3cm). Anaemic due to blood was. Was meant to have an ablation but was told when I came round from the GA that my uterus was too large and it couldn't be done. Was gutted. Don't know what to do next. Thinking to try embolization and hope that helps as really don't want a hysterectomy as worried about the long term effect it may have on my body. I'm a sporty person and don't want to jeopardise that (its the only thing keeping me sane at the moment). On 2 pumps oestrogel (and just started utrogestan after expelling my coil). Never know when the horrendous bleeding will start. Luckily I have always been home when it has happened. If I was at work it would have been a disaster. My life is on complete hold as I can't plan anything/go away/have nights out as I never know when the bleeding may happen. I roll the dice each week with my one day in the office. Any suggestions gratefully received. If someone has suffered this horrendous bleeding and had no treatment - how long did it go on for. I'm 49 so know I have to become menopausal at some point but I can't continue like this for another few years. If this ever comes to an end I'm going to celebrate with white pants and white trousers!

Oh my goodness- how awful.

I don't know your circs, but if you can it's always a good plan to get a 2nd opinion (and that might mean choosing someone privately, to discuss options.)

For example, saying your uterus is too big for an ablation. What exactly does that mean regarding the outcome?

If only one consultant has said this I'd be asking a 2nd or a 3rd.

If they all agree, then a hysterectomy may be your only option (or another try with the Mirena.)

As for HRT, you might be better off an a continuous type using Norethisterone daily, which is stronger than Utrogestan and it may just keep the bleeding at bay.

I'd shop around for opinions if you can afford the initial consultation.
Gynaecologists all have their own expertise and what one says, another will have a different opinion and experience in treating.

thank you @JinglingSpringbells I am lucky that so far I have been able to go private and it was the private gynae who said she tried several time to do the ablation while I was under GA but she couldn't get it to work (I think the machine is automatically controlled and can't be overridden if it doesn't want to work for some reason).
I have some Norethisterone and will likely start taking that in Nov as I have a work business trip I am dreading (first one in years - I used to travel a lot with work but have managed to dodge trips since covid as too scared to travel with the bleeding). I did try it earlier this year when we had a couple of days away for Easter. It did work ie I didn't bleed but I had a constant feeling I was about to and didn't particularly enjoy the experience (although having no bleeding for a few days was heaven!) I think you're not meant to take Norethisterone daily for long term as I believe it can then stop working. There are also some risks associated with it as it isn't body identical. So I am a bit concerned about taking it long term. But I think it is definitely a short term solution and a back stop to get my through eg business trips I can't get out of.
I'll need to speak to my insurer to see if they will pay for a second opinion (or maybe I bite the bullet and pay for a second opinion myself - its so horrible that it would be money well spent.) Anything to get my life back.
I also need to do my research re uterine fibroid embolization to find a good person as it isn't the gynae who does that (although I am sure she will recommend someone).

It may be that the gynae you saw wasn't up to speed or experienced enough. Any thoughts on that? It sounds a bit dodgy that you were under a GA and then she found out the machine wouldn't work on your uterus.

Norethisterone is the progestogen in all HRT patches and many tablet forms of HRT.

It can be used long term as HRT but it won't be the same dose as to delay a period.

If you do need a hysterectomy, many are now done vaginally and with minimal side effects and a faster recovery time. Again, you'd need to shop around for someone good at doing these.

I had an embolization this year (3 year waiting list in my area) and it's honestly been the best decision I've ever made. I will warn you though the radiologist who did mine (and it's an interventional radiologist not a gynecologist who does the procedure) said the neighbouring CCG not only doesn't carry out the procedure but equally doesn't endorse referrals into their area for the procedure, so check your patch when you ask for a referral.

My personal experience is it was a god send of a procedure, the hospital said unlike the male equivalent of this surgery they have never had any woman return which they see as it proving it's effectiveness. Feel free to PM me if you want to discuss it.

@LonlinessPandemix i have had it done 4 times 😭 the first time back in 2010 and the last in 2018 - I’m 47 and they said they wouldn’t bother doing it again as I’m getting too old anyway and they say the fibroids will shrink as I go into menopause (which they are, I can tell as I’m less bloated) But it doesn’t always work - 2 of mine were totally unsuccessful, 2 were partially but they grew back again. I realise I am an anomaly as the usual success rate is well over 90%… I have very stubborn fibroids!

thank you @Fatpigsinblankets disappointing to know you've had to have it done 4 times - but I guess an upside is it can't be that bad if you've gone back for more 3 times! From what I have read it seems like you are in quite a bit of pain for 24 hours after, a bit wobbly for a week and back to normal after eg 2 weeks? Where did you get yours done. I'm based in Buckinghamshire so SE/London good for me. For the ones that didn't work did you get no relief from heavy bleeding/clots? I'm 49 so hopefully only time for 1 go before menopause hits!? (that's what I keep hoping for).

My situation was exactly like yours, didn’t realise how I’ll I was until hospitalised from blood loss and required blood transfusions.
You really do have my sympathy.

I had a hysterectomy at 40 to resolve the issue.
Def not trying to sell you on a hysterectomy, but I am a few years beyond it now and have no regrets whatsoever.

I have my life back and am not at the mercy of horrendous blood loss.
I cannot believe how bad I felt every day but just trudged on.

I hope you are able to resolve in one way or another soon.

It's classed as severe pain, and my experience very much was it is severe. You'll be put on a syringe driver/self managed opiate for the first 24hrs. You also will have to remain absolutely still on your back for I think it's 4 hours (might be 6) so if you need a wee in that time frame it's a bedpan job and you MUST NOT move or try and help you have to let them do all the work.

I had an embolization in June, I had 9 fibroids ranging in size from 9cm to 3cm, my uterus was up above my belly button.. It was 100% successful. They are shrinking away slowly, and bar some spotting and bleeding post procedure (which is not pleasant but my alternative was a full vertical incision hysterectomy and 3+ months recovery), I have had NO BLEEDING! And I had bleeding exactly like you describe. I would highly recommend it. You need an interventional radiologist.

You may not want a hysterectomy but many women (thousands) have them for dysfunctional bleeding. Mirena can help but not much use if it won't stay in. You can have a sub total which keeps your cervix and ovaries. You can probably barely function. They now also do them vaginally. Possibly better to do it when you can recover well due to age.

I had a uterine fibroid embolization in 2020.....it has been amazing. In fact at 49 I could have written exactly what you have. I had the procedure at 52. Wish I'd done it sooner. I had it done in bedfordshire so not too far from you. Please dm if you want!

Hi just found your thread through a google search

@Thejoysofaging I’m going through exactly the same as you are - the heavy bleeding is affecting all aspects of my life. I have just expelled my second Mirena and so re started the Utrosgestan. I never thought I’d consider a hysterectomy but at 51 I have too much life to live to feel like this!

I’m going to speak to my gp and get in touch again with my hospital’s menopause clinic tomorrow to discuss options. In my scan two weeks ago they discovered fibroids and a cyst - all new - so they said to come back in 4 weeks to check situation again.

I am so desperate that if a hysterectomy is the best option recommended by GP/menopause clinic but the waiting list is too long I may even consider going private. I have a friend who had a full hysterectomy 10 years ago (due to cancer risk) and at 57 she’s living her life to the full - so feeling Hopeful. Thanks all and wishing you all the best @Thejoysofaging xx

I had to check I hadn't written your op @Thejoysofaging as you have described exactly I have been and am going through. I really empathise with you about not being able to arrange events as Sod's Law, after days or even weeks of nothing, the tell tale warning of a flood starts. I had it recently on an attempted day out with my parents.

I am a little older than you, 51, but I have had this issue on and off for about 10 years. I have had polyps removed but they said there is nothing they can do about the fibroids. I was offered an embolism but then read it wouldn't work due to the fibroids, and one gynaecologist said it would work but another said that it wouldn't. I also had a Mirena but expelled that.

I have some symptoms of being peri due to the Zoladex injections to prepare for the procedure (was a d&c in the end) and am on HRT 2 pumps of gel a day and 2 tablets daily for two weeks on/ two weeks off. I also have a depo provera injection every 12 ish weeks. I still bleed through all this. I am currently on week 4 of bleeding to varying degrees.

So I am on the waiting list for a hysterectomy. Currently 18 months done, another 6 or more to wait unless there is a cancellation. I am dreading the op and recovery, but I can't do another 10 years potentially of this limbo. I hope you find something that helps you.

Just a minor update of where I am up to. Saw gynae consultant a couple of weeks ago and decided to give embolization a go. Had an MRI just this week to see if I am a suitable candidate. In the meantime I took some noristorene for a couple of days this week to delay period as was on a business trip and having my period would have been a disaster. It worked and delayed my bleeding til this weekend. A nice back up option to have.

Good luck and love to hear how you get on.