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[GS]

Hi Everyone,

I’m 47 and have been on HRT for over two years. It has been a very bumpy journey and as I write this, I am on my 22nd day of continuous bleeding. I just feel ridiculous. Emotionally and physically done.

I have a medium size uterine fibroid, which was found in an ultra sound in January after a trip to A&E due to severe abdominal pain and cramps. My ovaries feel like they’re going to pop every time I stand up, bend over, sneeze etc. I also have a permanent tugging/aching sensation…

Since January, I’ve been on a waiting list to be seen by the Gynaecology clinic at the Royal Free in London. The letter told me not to contact them until early April if I hadn’t heard from them by then, but I phoned today because of the crazy bleeding time. They told me that yes, I’m on the waiting list, but it’s 45 weeks long, so I won’t be seen until December earliest.

It takes forever to talk to my doctor and they have just prescribed painkillers and laxatives for the pain.

Is it wrong to be dreaming about a full hysterectomy? I have two amazing teenage kids. A loving husband of 22 years. They are concerned and supportive, but I’m not a barrel of laughs to live with I’m sure.

I am on Evorel 75 patches and 100mg Utrogestan x 2 continuous. I react very badly to coming off progesterone, so continuous has worked for me. I am scared to change anything again, as it has not worked out in the past. My husband wonders if it’s worth coming off HRT all together…

Sorry for the essay and I’m not sure if I can do anything but wait, but if any of you have any advice on how to get through it, I’d really appreciate it. Just browsing through this forum helps a lot. Thanks so much for reading.

GS ✨

[CLKD]

   it may be that the HRT is triggering the continual bleed - I'm sure that some1 will be along with more advice.  U could put the product name/s into the search box on the Forum: individually : to read the threads. Make notes.

R U able to take an emergency appt should some1 cancel at the Royal Free?  Does the Hospital have a system up and running - mayB ring to find out?

Hysterectomy is major surgery - some get benefit so it's worth considering.  U need to discuss HRT requirements B4 subjecting yourself to surgery intervention to C whether U may require it.  Some Surgeons want 'it all out', i.e. ovaries ...... that is a personal decision not to be pushed into.

[GS]

Hi CLKD, thanks for getting back to me.

I will just have to try the hospital every now and then to check for cancellations, but I think there are many before me on that list too.

I understand that surgery is a big decision and I won’t take it lightly, but I feel at this moment in time, that having everything removed will only be beneficial. I will definitely do my research though, along with checking different threads on this forum regarding the HRT I’m on, as you suggested.

Thanks again for replying, it means a lot.

[CLKD]

Let us know how you get on.  Ask away!

[sheila99]

Oestrogen can make fibroids grow so from that point of view it might be worth considering stopping/reducing it. But it depends how bad you feel without it. If it's 45 weeks to see them the wait for a hysterectomy might be even longer?

[BermudaQueen]

I’ve just, thankfully, had my Hysterectomy… I can only imagine the stress of such a long wait!

I was seen last April initially and they found multiple large fibroids, they were making my life a misery…

I was on the ‘waiting list’, but after a chat with my GP she wrote to the hospital and expressed the urgency… I was completely flexible about dates and I was offered a cancellation.

Your other route would be to pay for an initial private gynaecology appointment to at least get a professional viewpoint of your individual situation now and see if that information might push things along a little.  I had considered a private Hysterectomy, I know it’s a LOT of money, but I was prepared to take out a loan… thankfully I got the cancellation.

Wishing you the very best, but do advocate for yourself and get your GP to support you 🙏

[GS]

Thanks so much for your advice and support. I will definitely try and get a face to face appointment with my GP. Everything’s done online or by phone these days.

I would be worried to lower the oestrogen, but there is no sign of the bleed stopping, so I’ll try anything soon.

If I’m not successful with the GP, I will consider the private appointment. I would just really appreciate someone who knows what they are talking about to take a look at me!

Has the hysterectomy helped, or is it too early to tell? I hope so and that you’re feeling much better.

Cheers again all for the support and advice xx

[BermudaQueen]

Thanks so much for your advice and support. I will definitely try and get a face to face appointment with my GP. Everything’s done online or by phone these days.

I would be worried to lower the oestrogen, but there is no sign of the bleed stopping, so I’ll try anything soon.

If I’m not successful with the GP, I will consider the private appointment. I would just really appreciate someone who knows what they are talking about to take a look at me!

Has the hysterectomy helped, or is it too early to tell? I hope so and that you’re feeling much better.

Cheers again all for the support and advice xx

Oh has the hysterectomy helped, wow even though I’ve gone through this major surgery and had a tough week so far, I cannot begin to tell you the difference it’s made!

Prior to surgery I was suffering with multiple large fibroids… picked up on an  internal scan after I told my GP I was bleeding on and off, but primarily because I had constant throbbing and cramping in my uterus, which was worrying me!

My tummy felt like it had a sack of potatoes in it, I was soooo uncomfortable, clothes didn’t fit, backache, pains down legs, constipation and urinary frequency…

When I woke up from surgery a week ago today, despite the sore tummy, I can honestly tell you that I could tell my uterus (I actually had a total done, uterus, tubes, ovaries and cervix) was missing!  I felt lighter in my tummy and all the pressure feelings gone!

It was the best thing Ive ever done … you won’t regret it … happy to chat about it as so want to help other women! 🙏

[GS]

That’s amazing, I’m so happy for you and that is basically exactly what I needed to hear.

Although I only have one fibroid (from the Jan scan) I feel exactly the same every day. It’s painful, it aches, I’m aware of it at all times, I’m bleeding consistently, bloated, sore boobs, carrying extra weight, exhausted and it completely dictates my life. Good diet is non existent, and exercise is out the window. Definitely no way to live.

You have inspired me to fight harder for myself and I will. Thank you so much!

[bombsh3ll]

There are multiple treatment options available in primary care that you could use to stop the bleeding whilst waiting for a gynae appointment.

I don't understand why your GP would prescribe laxatives (unless you are also constipated) but not offer you any form of bleed control FFS!

Is there someone else at the practice you can see?

[GS]

Hi bombsh3ll, they prescribed the laxatives in case I get constipated whilst taking the painkillers, but I haven’t needed to use them yet. My GP used to have a menopause clinic with a pharmacist who would be available one Monday a month, but that appears to have disappeared, and as I don’t know which GP I’ll see each time, it can be very hit and miss with the help and guidance. I’ve tried to ask for specific doc, but they’re never available when I need them. The last time I saw them, I had bled for two weeks. This time, I’m on 23 days, so will push for a treatment to deal with that. 

[GraceM]

I imagine the oestrogen dose is not helping the situation.  It will be feeding the fibroid and utrogestan may not be strong enough to balance it out.  I have smaller fibroids and ended up coming off hrt as the bleeding, for me, was just too annoying.  I started on 50mg oestrogen patch with utrogestan and after a few months I reduced to 25mg to see if bleeding would ease off.  I then got the mirena coil and tried increasing to 50mg patch again but bleeding increased.  So I gave up the patch altogether a few months ago, and now just have the mirena coil.  Since stopping the patch, the bleeding is just a few days spotting per cycle.  Cycles have stretched out and I have lost weight. I don't have the awful bloating I used to have and my boobs are not near as sore.  For me the oestrogen was the problem, and the mirena seems to be helping a lot.

[Holsy]

Hi GS
I totally know how you feel, but I'm sorry to hear that you're struggling to get the help that you need.
Back in 2008, I was bleeding constantly & heavily, up to the point of nearly collapsing due to lack of iron. I couldn't go out due to it coming through my clothes, I even wore 2 or 3 pads. I was in so much pain too.
Due to being so weak, the GP finally agreed to send me for a scan, even though they knew that my mum & sister have fibroids too. Anyway, yes they discovered that I had several fibroids, one getting a little too large. So that was removed and I had the mirena coil fitted at the same time. The other fibroids were left as they were not deemed worthy of removal at that time. I still have them. Having the mirena coil fitted was the best thing that I ever did. It took a short while to settle down, but after that it's been plain sailing and has even helped now that I'm on hrt. I'm surprised the GP hasn't suggested it, my current GP fits them, but women's health clinics can also fit them. You will then only need the evorel patch.
Good luck, hope you get seen soon.

[GS]

Hi GraceM and Holsy, thanks for your advice and experiences.

I actually managed to get a face to face appointment today and saw a new Dr at the surgery. She told me that she had no power in speeding up the waiting lists and just to try for cancellations when I can. She also asked me about the mirena coil and thought it would be a good solution to the bleeding. I must say I’ve had historical doubts about the coil and its side effects when I was considering birth control, but after reading your stories, maybe I should reconsider while I’m waiting for the gynae appointment? Any more advice about what it’s like having it fitted and any side effects?

I will have more blood tests and have also been prescribed Tranexamic and Mefenamic acid in the meantime to help with the bleeding. So much to try and think about.


Cheers all,
GS 

[Holsy]

Hi GS

That's great re: the face to face appt. Good that she suggested the mirena coil too.

It's not a very comfortable experience having the coil fitted. My first fitting I was under a general due to having a fibroid removed, but you have it replaced every 5 years, so I've had it replaced 3 times. It is painful and you have bad period pain for a few hours and a little bleeding, but that's it. No more periods after that. Your first coil may take a little while to settle down, but in my experience it is honestly worth it. I didn't have any side effects at all.

I'm also glad that I only need the oestrogen for hrt. Really hope that you get it sorted very soon.