Has anyone tried Ryeqo for fibroids?

[Ridingladybugs]

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.

ps @Kellou1 i don't think taking iron tablets would affect the Ryeqo. I've been anaemic for ever, and taken ferrous fumerate for years, but after blood transfusions this time around they gave me an IRON INFUSION. It was brilliant! I felt so much better after so long of feeling shit. I hope you feel better soon.

@Saara23 i've just worked out how to tag / respond to people! thanks for your kind message

Hi kellou1, i'd been spotting non stop with Ryeqo until Saara23 told me her bleeding stopped when she combined ryeqo with tranaxemic acid, i used 1 tablet of tranaxemic acid for only two days and since then i haven't spotted at all in the last one week, you can give it a try, just that fluid comes out fom my pp, i wonder what this is, can't the place be dry for once

Hi @GCAcademic I live in the southwest and similarly nobody has heard of Ryeqo however my consultant (NHS) who is a specialist in Fibroids recommended it and wrote me a prescription. That’s how I got it through my local GP. As @JaneMac1 said about norethisterone- completely agree. I’m on a combination of Ryeqo, norethisterone and Tranexamic acid which has stopped bleeding for me.

@Kellou1 i don’t think the iron would affect how Ryeqo works. It’s awful to hear what you’re going through- I went through the same with massive clots. It got so bad I couldn’t leave the house for weeks as I was drenching everything in blood. Try suggesting norethisterone to your GP, you’ve got nothing to lose ( one of the ingredients in Ryeqo is N but just very low dosage) let us know how you get on. Sending you good vibes ❤️

I’ve just come off the phone to my gp and she says I can take transamacid but it’s double the risk of blood clots so I dearnt take them
I’m really in a crap situation 😢

Hi @Kellou1 yes sounds like you are having a hard time. If you are still bleeding excessively then I think you'll have to take something apart from Ryeqo. I took Tranexamic Acid for months and it was ok, reduced the bleeding a bit but certainly didn't stop it. What about Norethisterone? Have you suggested it to your GP? I would have thought the GPs priority would be to stop the bleeding.... hang on in there. Sorry to hear you are having such a crap time. I found Norethisterone best (only) thing to stop bleeding, but I guess everyone is different. Regarding blood clots etc, my GP called it a 'balance of risk', ie either bleeding out or risking clots with the norethisterone.

Ask your gynaes about embolization surgery. I had this done and it's been a miracle cure.

@Kellou1 - so sorry you are having such a difficult time. I remember how awful the excessive bleeding was ( I also had huge clots bigger than my hand, I still feel traumatised thinking about it).

If Ryequo isn’t working could you speak to your GP about trying something else? Is it long term or just short term? I ended up on Zoladex plus progesterone plus had trax acid. That eventually stopped the excessive bleeding.

I know the info re clots is worrying but ( not to worry you!) I ended up haemorrhaging very badly so would be good to consider trialling stop the bleeding. Also I had a myomectomy - which I was told is as difficult/sometimes more difficult an operation than hysterectomy. So far it’s been life changing to have ‘normal/light’ periods since then. It’s honestly worth the operation

*trialling the trax acid

Started Ryeqo last month and it’s definitely affecting my sleep patterns.. have night sweats and I think I got mild symptoms of menopause if there is such thing, I’m uncharacteristically forgetful. I could be in a meeting and mid way conversation totally forget what I was talking about. It’s bonkers! Other recent development, loss of appetite and feeling a bit nauseous, not sure if it’s related. If this continues I will have to go back to my gynaecologist. Was on GnRH last year which threw me into menopause and depression not even hrt helped to lessen the symptoms as I was in tears most of the time for no apparent reasons.

To get prompt help I had to go private , but when it comes to prescription it is on NHS as I couldn’t afford the price.

Glad I came across this community.

@OnaT with you on the night sweats! Interesteing what you say about GnRH - that sounds like a horrible experience. I hope Ryeqo suits you better. I am on Month 5 of Ryeqo, with 20g norehtisterone too to stop the bleeding. All best wishes to you.

Hi I started taking Ryeqo on 5th September on the 5th day of my cycle.This was suggested by my gynaecologist.

I had moderate to heavy bleeding started on 12th September which lasted for 10 days.
today is 2nd October and the cycle has started again,has anyone experienced more bleeding after taking Ryeqo?
should I wait for a month to see if this improves? Or speak to the gynaecologist?

@MenkaB I found that Ryeqo did not stop the bleeding - I am on Month 5. I take norethisterone (at least 15mg a day) to stop bleeding, under consultant's advice. hope this helps and hope things ease for you soon.

A quick update – emailed my gynae to ask for next batch of Ryeqo. I've been taking it since May, so nearly 6 months now. She is concerned at my taking Ryeqo & norethisterone (the latter the only thing that stops the bleeding) due to risk of deep vein thrombosis, clots, stroke.... which completely freaked me out. She wants to put me on Prostap, which is fine by me, so that is hopefully next step. In the meantime I have reduced the norethisterone to 10mg a day, but having light blood loss and worried about going any lower than this because of the bleeding. Just thought I'd better mention it as I have been advocating the Ryeqo & norethisterone combo, but it is obviously not without risks.... haven't heard back from gynae yet and just about to run out of Ryeqo! Wot larks.... 🙄

Thanks for the update, JaneMac1. Given that you have been taking Ryeqo for six months now, have your symptoms improved? It would be good to know as I’m in my third month taking Ryeqo and that’s when it’s supposed to kick in and I’m still experiencing terrible pelvic pain and have fibroids. I was admitted to A&E due to severe pains a couple of days ago, and I couldn’t even move my left leg, which was a bit strange. I have now booked my second laparoscopy to investigate this issue further with additional treatment if it’s related to endometriosis. If the source of the pain can’t be identified, I will have to make a decision to have a hysterectomy as I’m in constant pain. My new diagnosis is now Edonomyosis which I’m told hysterectomy is the best option to address the constant pain.

@OnaT oh gosh it sounds like you're in a lot of pain. I don't really have pain with my fibroids, just swollen and discomfort sometimes. In terms of Ryeqo, I sweat a lot at night, and if I don't take the norethisterone I bleed, but in general I can do about a million things I couldn't do before, (because I was bleeding so much before, anaemic etc)
Given the sound of your severe pelvic pain, and that you were in A&E, it sounds like you need something more serious than Ryeqo? I didn't want a hysterectomy myself – though it's still on the table – I'm nearly 54 and so hoping I can get through this with a 'chemical menopause' which will shrink the fibroid apparently... but sometimes I wonder if it's worth it, and whether it would be best to get the whole lot out. Constant pain is no joke – good that it is being looked into and I hope it gets resolved for you soon. Take good care.

Thanks for the update @JaneMac1 I’m on my second month taking Ryeqo and I have been bleeding for past 20 days ,it’s not heavy so I don’t know if this should be a concern? Has anyone else experienced this symptom? Also I’m experiencing some hair fall ,is there any thing that could stop the hair fall?

@OnaT Wow I’m glad I found this thread! I’m on week 6 and have had the same pain alongside visits to a&e mine is for fibroids. The bleeding has been awful I haven’t really been able leave the house. It’s making me feel like I should go for the hysterectomy as I haven’t been able to go to work. I’m definitely on a rollercoaster emotional and physical. I read that the severe pain can be the fibroids shrinking but I have the same as you with pain in the tops of my legs. Sending everyone hugs I’m finding this journey more emotional and painful than my reoccurring miscarriages x

@Bex2023 I’m really sorry to hear what you are going through plus miscarriages, it must be really tough on you. I have to admit I was so excited when I came across this thread, because I was starting to think I’m making all this up even though I had diagnosis in front of me.

Mirena coil completely stopped my bleeding, and I’m very thankful for that.On my last scan in May, I didn’t have fibroids but ruptured ovarian cyst, now fibroids just popped out from nowhere, so I’m really confused. My understanding as well was that if you have fibroids Ryeqo might help shrink them.

Pain on the left leg was just strange because I couldn’t even lift it or walk but now I’m better. I’m emotionally and physically exhausted as well, probably it’s because I have tried almost what’s out there even doing further investigation paying privately , that’s how I ended up on Ryeqo and GNrH. My work is taking a beating as well and the quilt of being off work is killing me. I’m really torn,@ 42 yrs the thought of hysterectomy is hard to rationalise.

I have literally ran out of gas that I’m thinking of taking a break off work. And then what, I don’t know!! And i convince myself that at least, when I’m busy at work, I can forget about the pain for a moment.

Hi all. I wanted to update you. I’m on month 4 of taking Ryeqo and suddenly last week my bleeding started again. What is interesting is the at I feel my fibroids have really shrunk- I’m booked in for surgery to have them removed in two weeks.I requested a scan which I’m having next week so fingers crossed they have shrunk and Im not imagining it.

Incredibly nervous as it could end up being a hysterectomy if they haven’t. I’m 41 and just not mentally prepared but also know that the pain, sweats, constant bleeding and tummy distortion is massively impacting every aspect of my family life.
will let you all know how surgery goes. Wishing you all good news and a pain free world

Hiya I'm on day 8 of taking Ryeqo to shrink my fibroids before my hysterectomy on the 4th Dec. Did anyone experience horrific pelvic pain! And heavy bleeding?! I can deal with the bleeding but it's the pelvic pain which is killing me. I've decided to stop taking it. It's just too painful.

Hello everyone, a quick update to everyone, i stopped taking ryeqo after the events with bleeding and then someone told me about an herb which works like magic, whoever says there is no nature herb for fibroids is very wrong, i have started taking is since almost 3 weeks and my fibroids has reduced a lot, it is really working, it is all over the internet but we were did not just pay attention to it, we all here can search the internet for Aidan pod, cloves and negro pepper, wash and cook all these three herbs and drink a 250ml cup morning and night for a month first and come back and thank me, my biggest fibroid was 12cm and it has really reduced, i want to take it for 2 more weeks and go for an ultra sound.

I wanted to add that I’ve been taking Ryeqo for over 4 months and after attending my ultrasound a few days ago- it’s made no difference and one of my fibroids is still 15cm. The consultant was not surprised and told me to stop taking it. I still take Noristherone as my bleeding restarted a few weeks ago. My op is next week so please keep me in your thoughts and hope it’s a straightforward myeomectomy.

All the best for your op. Did you get heavy pelvic pain when you was on Ryeqo?.I've stopped taking it.