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Original poster

Has anyone tried Ryeqo for fibroids?

136 replies

Ridingladybugs · 04/10/2022 17:00

Just that really - been offered that or an injection of GnRHa whilst waiting for surgery ( I had severe bleeding which resulted in me being in resus and then hospital stay).

I didn’t get much info from the consultant - on reading I think it possibly has less side effects? I’m currently on Provera until moving to one or the other.

OP posts:
Bex2023 · 16/11/2023 21:40

Hey I did and still have :( I think this is the worst I’ve ever felt x I hope you are ok

Saara23 · 17/11/2023 07:04

yeah Mine was on and off with bleeding- I just ended up carrying change of clothes,pads underwear etc and if I ever sat anywhere like my car I would have to put down towels- I expect some of you had that level of bleeding. But bizarrely severe pain started a few days ago.

Original poster
Ridingladybugs · 17/11/2023 08:56

@Saara23 - good luck with your op!

I have to admit the first few days after my myomectomy were quite tough but after a week I did feel a lot better.

My life has been completely changed by my myomectomy - without doubt the best decision I ever made to have it. A year on and I now have light manageable periods and the fear of bleeding has gone.

Hope all goes well for you

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Sp2025 · 17/11/2023 09:08

Ridingladybugs · 17/11/2023 08:56

@Saara23 - good luck with your op!

I have to admit the first few days after my myomectomy were quite tough but after a week I did feel a lot better.

My life has been completely changed by my myomectomy - without doubt the best decision I ever made to have it. A year on and I now have light manageable periods and the fear of bleeding has gone.

Hope all goes well for you

Hi, thought I'd join if that's alright as I've suffered from fibroids too!

I've just had a myomectomy, been almost 2 weeks. 3 month prior to the surgery I was started on monthly zoladex shots to try and shrink my fibroids. Agree with you, first few days after the surgery are really tough but started to feel a lot better after a week. I just hope they don't return, although my consultant says they might do, has anyone had experience of them coming back after a myomectomy?

GCAcademic · 17/11/2023 09:14

Just returning to say my hysterectomy went well - the impact of the fibroids was so incremental over so many years that it wasn't until they were no longer there that I fully realised what normal life is like! I can do all sorts of things now that I just couldn't contemplate before the surgery.

I bled lightly but consistently on Ryeqo, with some cramping (but nothing severe like other people have experienced). My consultant says that the fibroids had sufficiently shrunk by the time of the surgery for her to be able to do a horizontal cut rather than the vertical one that was previously looking likely.

Wishing those of you with upcoming surgery well. Hopefully you will also feel as good as I do afterwards.

Original poster
Ridingladybugs · 17/11/2023 09:14

I haven’t but I’m nearly 47 so near to
menopause plus had an ovary removed. My consultant also discussed this with me, unfortunately I think all you can do is keep an eye and hope they don’t .

I was also on Zoladex for 2 months and it did shrink and reduce blood flow to my fibroid which helped with the op.

OP posts:
Original poster
Ridingladybugs · 17/11/2023 09:16

GCAcademic · 17/11/2023 09:14

Just returning to say my hysterectomy went well - the impact of the fibroids was so incremental over so many years that it wasn't until they were no longer there that I fully realised what normal life is like! I can do all sorts of things now that I just couldn't contemplate before the surgery.

I bled lightly but consistently on Ryeqo, with some cramping (but nothing severe like other people have experienced). My consultant says that the fibroids had sufficiently shrunk by the time of the surgery for her to be able to do a horizontal cut rather than the vertical one that was previously looking likely.

Wishing those of you with upcoming surgery well. Hopefully you will also feel as good as I do afterwards.

Yes this! I’d not even realised how much my life had been impacted for years with the bleeding! The difference is amazing

OP posts:
Usernameismyname01 · 26/11/2023 11:36

Week 3 on Ryeqo and suffering with daily cramps and bleeding

I'm 52 and think I'm in menopause but have not stopped spotting and bleeding pretty much daily in the last 2.5 years.

The coil didn't work nor has HRT to stop bleeding

I'm on waiting list for a hysterectomy and now they have put me on Ryeqo - I thought this would stop the bleeding!

I'm in more pain and bleeding more heavily than before starting this (HRT Had the same effect too!)

Seriously thinking I should stop taking it as I can at least get on with daily life with spotting and occasionally heavier bleed rather than with constant pelvic cramps and now having to use tampons daily.

Anyone else like this?

Leannalg · 26/11/2023 15:36

I was the exact same!!! Never known cramps and pelvic pain like it! I had to stop after 8 days I just couldn't deal with it! And I'm still bleeding from it! But the cramps have settled.

Saara23 · 26/11/2023 19:02

Hi, glad your op went well. In my experience they did come back when I became pregnant. They grew so big that at one point they were the same size as my baby. I was colossal!
I have now just had surgery (a few days ago) to remove the large fibroids and it was successful and did not end up becoming a hysterectomy which was good for me. I am at day 5 and feel okay. Interestingly my fibroids had in fact shrunk (being on Ryeqo for 4 months) from 15cm to 8cm which they only discovered on surgery even though I had said they had as I could feel them.

Bex2023 · 05/12/2023 03:17

Hey everyone, is anyone able to give me a heads up on how they felt coming off reyqo? I’ve somehow managed to get through a long painful 11 weeks. Yesterday I got told I could come off them. I’m worrying if I’m going to feel as bad coming off as I was taking on them. If possible, how the mood was and the first real period x

Leannalg · 05/12/2023 07:32

Omg 11 weeks! You did amazing! I couldn't do it! Only took them for 8 days! I felt literally awful. And the pain was off the scale!

I think it stays in your system for good while, as I'm still bleeding from it. Not much pain now tho.

All the best.

Bex2023 · 05/12/2023 10:42

I promise I didn’t feel like i was doing well! It was the worst 11 weeks I’ve been through. Never, ever felt pain like it. I think cried my way through it 🙈 Thank you for coming to me xxx

Leannalg · 05/12/2023 13:47

Awww I feel your pain, hope that it had done its job, and you get sorted real soon.

SN48 · 09/12/2023 15:50

Thank you all for your posts....I have just been prescribed ryeqo while I wait for an abdominal hysterectomy to remove a large fibroid. Good to know of others experiences and thoughts :)

Nassy18 · 19/12/2023 18:02

Hi , Please could someone give me some guidance. I have large fibroid over 11cm and look 6 mths pregnant. I have merina coil whoch has helped with the bleeding but my fibroids are mako g me feel so uncomfortable. I have an umbilical hernia . I have been given Ryeqo today as my Gyn thinks that will shrink my fibroids and maybe save me from a hysterectomy. Bit scared of taking it after reading the side effects as currently my sleep is ok and not too many hot flushes. Should I get my hernia repaired while I try the Ryeqo for 3 mths. Thanks for listening.

JaneMac1 · 21/12/2023 12:51

Hello @Nassy18 – I took Ryeqo for 6 months – I am off it now. I did notice sideffects with taking it, night sweats mainly, but it did help with reducing the fibroid – I am currently waiting for MRI results which will be interesting. All of this is to avoid hysterectomy hopefully, I am 54 so Ryeqo hopefully pushing me into menopause....
For what it's worth I would say yes, get the hernia repaired while trying the Ryeqo for 3 months – seems like a plan. best of luck

Original poster
Ridingladybugs · 24/12/2023 13:07

Hi @Nassy18 - how bad is your umbilical hernia? what Is your consultant saying?

I had an 11cm fibroid as well. I ended up on Zoladex which did shrink it considerably. I was also recommended a hysterectomy, but had a second opionion from another gynae who because I had a single fibroid and was mid 40s ( well had 2 other very small ones which weren’t growing) recommended a myomectomy instead. This is where they remove just the fibroid - thinking being that as I’m close to menopause it wouldn’t grow back. It is as big an operation as a hysterectomy but obviously leaves your womb etc.

It did however cause me to have a hernia which I have since had repaired. So I’d ask for advice re the hernia repair if there is a chance you will later have a hysterectomy as it may be worth waiting, depending on your circumstances.

OP posts:
Empressme · 28/12/2023 00:34

Hi
I've had a myomectomy and UAE
Now I've been given this after many visits to a n e from hemorrhages
I read that is causes flashes n bleeding which I told my consultant I have, I'm weary to take as it seems pointless and counter productive
They are still in the bottle
I take norethisterone, but as you stop the bleeding returns ugh

EAA · 15/01/2024 13:55

Can you please update about the side effects and results _

SN48 · 15/01/2024 21:15

I've been on ryeqo for nearly 2 months. I had constant bleeding for 3 weeks and now have spontaneous heavy bleeding and blood clots. I'm hopefully getting a date for hysterectomy surgery this week but am not sure if I should consider other options....any thoughts? I'm 48 and the hospital keep stalling, in the meantime I have had 2 visits to A+E and 2 iron infusions. Tbh if a hysterectomy makes my life easier I'm all for it, but I know it's not easy

Mara246 · 26/01/2024 23:18

@SN48, I have recently had uterine artery embolization (2 months ago) and no heavy bleeding since. Might be worth finding out about. I had to stay overnight in hospital and a lot of unpleasant cramping for a week afterwards but no general anaesthetic or extended recovery time. It's early days but I have just had one light period since then and hoping this might be the new pattern until I reach menopause.

I have numerous fibroids, a large polyp, adenomyosis and possible endometriosis, which caused very heavy and prolonged bleeding that made me anaemic and tied me to the house on bad days. Can't tell if the fibroids have shrunk much as I am a bit overweight 🙁 which I know won't help matters.

SN48 · 27/01/2024 01:26

Rhanks for your reply @Mara246 Since my last message I have a date for a full hysterectomy. I had the pre op earlier in the week and it appears my fibroid is bigger than assumed. Tbh I can't wait for surgery! Best of luck and take care :)

Mara246 · 27/01/2024 07:57

Good luck with your surgery @SN48. It will be a relief I'm sure to have a permanent solution to all the bleeding.

SN48 · 27/01/2024 10:06

Thank you Mara246 am very much looking forward to getting rid of the fibroid and all the other symptoms it causes!!