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.

How are you getting on? I’m on day 4 of taking ryeqo, spotting but I was at the end of my period so might not be related. I have had terrible sleep and have an ache at the top of my legs which I also got from the Mirena coil

Does anyone else who is taking ryeqo experience nausea and stabbing pain on right hand side of stomach in line with belly button. Or experience tenderness in that area.

That could be the fibroids rather than the Ryeqo? I had this as a symptom for a long time before taking Ryeqo.

Hi,

Anyone experiencing migraines and high blood pressure because of Ryeqo? I’ve been using it for over three months and suddenly started experiencing migraines and high blood pressures that I normally don’t have.

After three months of using Ryeqo there was no change in size for both uterus and fibroids. Was advised to continue using for reducing fibroids symptoms

Hi all, I had my 6 month scan and all the fibroids have reduced in size except for one of them. The gynaecologist said to keep taking it and thinks that it will also end up reducing that one, too. I haven't had any more bleedings, but I'm extremely careful to take it the same time every day (10-20 min delay at the max). This seems to be working for me. I spot a bit brown sometimes and feel bloated occasionally, but this is reducing over time. I asked for tranexamic acid in case I have another of those heavy bleeding episodes, I got wo scared I almost went to A&E.
I think I'm going to keep taking it for another 6 months and see how it goes.

@OneQuickFish hope you are doing okay. I had fibroids located in the same area and successfully carried a child although they grew up to 15 cm along with baby. (I had three large ones) I had them removed 8 months after a v traumatic birth. Before removal I was on transnemic acid because like u I was severely anaemic, then also put on Ryeqo. The former worked v well for containment of bleeding but Ryeqo was horrible- sleep deprivation, mood swings, migraines etc. it did nothing for my fibroid size and at the time it had only been out a few months so there was v little research or understanding of it. We all have very different bodies so perhaps try a combination that works for you. Looking back I’m honestly amazed I’m still alive n finally feeling good. The amount of blood gushing out of me everywhere was genuinely scary. In the end my only option was an abdominal myeomectomy - it’s been 7 months and life changing.

Hi all. I hope you can help. I have had extremely severe periods for years, emotionally and physically . I have two small fibroids, which I didn’t think were an issue until I found these posts and read some of the issues you have been having. I have adenomyosis and periods last between 14-19 days now on average due to having the mirena coil fitted (previously they were 10-12 days in total): for years I was told the problem periods were Normal but clearly not. I cannot take tran or Mef acid to help, due to other medication. Before a worst case option of an hysterectomy , I was advised to try ryeqo by a private gynaecologist . Before I pay for a private prescription ( over £200) I just wanted to know if anyone reading the thread has had good things to say about the drug. I am almost at my wits end with all the chemicals/hormones in my system and didn’t want to make it worse if there may be little benefit to the particular drug. I am a walking emotional misery for three weeks a month, whilst being in constant pain abdominally . I know I may seem negative, I am just struggling to take much more hormonal issues on and need some hope that it may have some benefits, even if small. Thank you in advance.

Hi Jani23, it sounds like you have a lot going on, sorry you're feeling so unwell. Are you under the care of am nhs gynae consultant at the moment? Or is it just private? The reason why I'm asking is because if you are suffering with your conditions, not only should you be prescribed Ryeqo free of charge, if the consultant thinks it might benefit you but you should also be reviewed with your periods getting longer rather than shorter and you being in a lot of pain. What are they doing to help you?

Hi just me823. No nhs at the mo. I ended up going private 12 months ago after having 5 years of hellish periods and being fobbed off by GPs who just said it was heavy periods, it wasn’t. It was smallish fibroids, considering what others have mentioned here and Adenmyosis diagnosed. Mirena fitted to try help but worsened as I mentioned. I really don’t want to go back to my Gp, or any local ones as they are all terribly shocking. Private gyne has said he will issue a request to my G P to put it on repeat prescriptions after first three months though, so long term, if it works, financially it hopefully will be ok. I’m just worried about adding more in to the mix and making things worse. I think he wanted to try this as he is reluctant to do a hysterectomy given I’m only 44 and not in full menopause. Which is why this was the next step. But I think having the H may be the best thing in the long term.

If your gynecologist thinks it's worth a try and has considered all of your other health conditions, might be an idea. From what I understand,Ryeqo affects everyone differently so hard to say what it would be like in your case. Sorry you had such a rubbish experience with the GPs. I felt I was going nowhere with my consultant but then I came across a lady called Dawn Heels on Instagram, she is an advocate for women with fibroids and takes no nonsense from the GPs or consultants who try to convince women that nothing is actually wrong and that it's "just what periods are". Might be worth having a look,.there's also a lot of info about fibroids, treatment options etc.

Yes I am having migraines, on and off nausea plus womb cramps. I had none of this before. I am on month 5. I have not been rescanned to see if shrinking. I keep hoping it will settle.

Hi I brought my referral letter to my own doctor and got prescribed on NHS. Hopefully you can too. Never rescanned month 5 on tablets. Headaches, on and off nausea and womb cramps. Hopefully they are shrinking. Only very light bleeding. Waiting surgery, trying to shrink them so smaller operation. I hope you can get it free @Jani23

Hi @MakoKoko its really good to hear that your fibroids have reduced. May I ask how much they reduced by? I am particularly interested as I just got prescribed Ryeqo and I wanted to know if the potential side effects are worth it for the reduction of fibroids. I read a few scientific papers (I plan to read more) on results of some of the trials and they only report an average 12-17% reduction. Which for some of the side effects that everyone have been experiencing doesn't seem worth it. It also seems that in this thread not many people are experiencing a reduction at all. If anyone else has experienced a reduction in fibroid size I would truly appreciate any information about you experience. Thanks in advance. It's really helpful to hear about peoples experiences. The information received from doctors is always so clinical and doesn't really reflect how people are effected in real life.

Hi @Fem46 , Good to do some research. In my case they reduced by 50 percent, except one that was the same or a tiny bit bigger. At the moment I'm not having any side effects (I hope it keeps this way). No spotting of any kind, not even light brown which is amazing because I was continuously spotting with the POP before. The first four months with Ryeqo were not good but from month 5 it has been OK. I think the key has been being consistent with the timing and not forgetting to take the pill. I have a prescription for tranexamic acid just in case I forget to take it.
However, I've never had too many bad reactions to the contraceptive pill when younger. Been OK with Jasmin or Yas, sort of OK with Desogestrel.
I think it may be worth giving it a try but Ryeqo is so expensive, get a NHS prescription if you can!
I hope it goes well!

I've been on Ryquo for 6 months, prescribed after a long wait via hospital. I think it's probably affected my mood (lower) and energy levels, and it hasn't stopped the bleeding. But the bleeding is much lighter and easier to deal with, I can cope with work again, am no longer anemic. Periods before would last maybe 14 days and have a 10 day gap in between, heavy almost all of that time. Now I might have bleeding for all but 3 days a month but mostly very light and at the same time each day, and the cramping pain has gone too. It hasn't been the quick fix wonder drug the gynecologist suggested but on the whole it's a huge improvement and very much worth trying.

"he is reluctant to do a hysterectomy given I’m only 44 and not in full menopause. "

Out of interest, why does he think you have to be in 'full menopause' to get a hysterectomy? The ovaries can be left in, but I've also heard that hysterectomies bring the menopause on a bit earlier even if the ovaries are left intact.

Could you please tell me how embolization went? Side effects etc. I’m due it and am concerned. Concerned about early menopause and change to sexual function

I have just stopped prostab injection and commenced on Ryego, i have been bleeding for over 2 weeks with occassionally abdominal cramp, not sure if this is normal, just had it for 4 weeks, still bledding, not sure if this is normal.

Hello! I’m just trying to do the rounds as you always hear the horror stories with these sorts of medications and none of the success stories. I’m in month 4 of taking Ryeqo with no break. It’s completely changed my life.

I have had fibroids for over a decade that have led to multiple blood transfusions and hospital visits. I’ve had three operations on them and at 38 that’s a lot to have to deal with. The last couple of years it’s been hard to juggle work with my periods as I bleed so much I can’t leave the house for about 3 days at the beginning of my cycle. Sometimes the pain is so bad I pass out.

My last op didn’t make any difference to my bleeding or pain, I’m on a waiting list for any of the other treatments and hysterectomy was on the cards. My fibroids grow unusually and irregularly so I’m not a candidate for a lot of treatments and tbh I don’t think they knew what else they could do.

Anyway! I started Ryeqo 4 months ago on day 1 of my cycle. That first period was hell and lasted 9 days, I bled a lot and had to go to a&e (mostly for fluids as it made me very dehydrated).

However since then it’s gotten continually better. I spotted on and off for about 3 months but the last month I haven’t spotted at all.

Side effects have been minimal - I got bad night sweats for a month and I noticed a little more hair than usual falling out but I have short hair so it wasn’t really an issue. My mood was fairly even but got a little worse the first couple of months when I would have normally been pre menstrual. The dip in mood passed.

I have a history of anxiety and I have adhd so I was worried it may play into that but I haven’t noticed anything too out of the ordinary.

The only downside is that I’m in the UK and as it’s an expensive drug it’s a bit of a mission finding a chemist that will order it in/dispense it. But as my adhd medication is just as much of a nuisance to find this hasn’t fazed me too much.

Happy to answer any questions you may have!

Hi I started Ryeqo on 12/11/2024 and it has not been easy for me, the abdominal pain I go through every evening is crazy accompanied with bleeding and clots although the bleeding is lighter than my usual periods.However I feel some lightness at the abdominal area.I believe I will work for me because the aim is to shrink it.

Hi I started Ryeqo on 12/11/2024 and it has not been easy for me, the abdominal pain I go through every evening is crazy accompanied with bleeding and clots although the bleeding is lighter than my usual periods.However I feel some lightness at the abdominal area.I believe I will work for me because the aim is to shrink it.

Hi there,
I am 33 yo, no children but hoping to have them in future.
i have been suffering from a fibroid for over a year now and have just had a treatment plan appointment with my gyny doctor following an MRI.
i am based in the north west and waiting times have been horrendous.
i am currently on tranexamic acid but I’m not really sure if it having any effect as I am still losing a lot of blood within the first 4 days of my period, including large clots and flooding at least one of the days.
at my appointment today I was given multiple options and I have been really opposed to contraceptive treatment so far but today I feel I was mis informed about ryeqo and therefore have agreed to go ahead with treatment whilst waiting for an open myomectomy although I was refused to be allowed on the waitlist until I have tried the medication for 3 months even though the operation wait list is exceptionally long.
is anyone else of child bearing age experiencing the same problems? Do you have any advice?
thanks in advance.

@ForMintCat I started having fibroids at your age. Fertility treatment at 40, unsuccessful. At 41 I was put on waiting list for open myomectomy and it happened 6months later (London). However, they couldn't access the fibroid as they found endometriosis with adhesions & endometrioma in left ovary. They just 'cleaned' as much as they could and closed again! Few months later I got pregnant and became a mum at 43 yo. I am on Ryeqo now, for a year. All fibroids have reduced except for one that is growing (the one they couldn't operate). I am waiting to hear options. My advise is try not to worry. Fibroids and even endometriosis or age are not always an impediment to get pregnant! In my case it happened after giving up and finally accepting I wasn't going to be a mum. A total surprise.

I have been on Ryqo for about 7 months now ,no periods at all ,but my doctor has already told me that there will be less bleeding or none until when I stop taking the medicine periods and ovulation will return rapidly.anyways I have stage 6 fibroids and I am 34 with no kids but I would love to have them ,so my doctor told me that the best treatment for me is Radiofrequency ablation ,they shall shrink my fibroids using that method and afterwards according to her I shall have kids ,because if they do normal operation something might go wrong since I have a very large fibroid on my left ovary which was giving me so much problems before I started taking Ryeqo.and I could feel it just by torching my left ovary but now it feels small on the 22rd I will be going for a checkup and I will update because after that I will undergo the Radiofrequency ablation.i just hope all will go well because it's been years of pain.i think Ryeqo is a good medicine even though it's a trial medicine it works .

Hi there ,I am also on Ryeqo been about 7 months and it has definitely changed my life from heavy periods and pain to no period and no pain .i am in Spain and I only pay 4.50€ for my doss each month.even though the drug is very expensive I am lucky enough to pay less for it . I have multiple fibroids one is very big about 200cm so my doctor suggested Radiofrequency ablation treatment for me ,which I will undergo next month .i have been on the waiting list for one year year and I can't wait to undergo my final treatment so that I can continue with my life with no worries .after 7months of Ryeqo I can say that most of my fibroids have shrinked and the bigger one has reduced for about 40% the medicine does not completely shrink the fibroids but it reduces them ,and while on it you can't have your periods ,there might be spotting but not every month ,I spotted for the first two months which for just a few hours then no periods until now .i hope your doctor will find the best treatment for you and for us all.