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.

Hi everyone. I saw a gynae today who gave me two options: Ryeqo or Esmya. Interestingly, she gave me information that is totally contradicted by this thread. She said Ryeqo had no side effects and also that it only treated the symptoms and did not reduce the fibroids. Fascinating to read here that many of you were told the fibroids would be reduced.

I'm really not keen on it now having read the thread with so many of you seeming to bleed more rather than less with it.

Just a quick update....I had surgery on Tuesday(abdominal hysterectomy) It was a little longer than expected and the fibroid was the size of a football not the 12cm it had been measured at! I am more than happy to share my story in my detail if it helps anyone else:)

@SN48 , I hope your recovery is going well and you will soon be able to enjoy the benefits of no longer having a football sized fibroid! I'm curious whether your fibroid was measured as 12 cm from MRI imaging or something else. Abdominal hysterectomy is my next option (if embolization procedure hasn't done the trick) as uterus too bulky to be removed by other non-invasive means. I presume that was the case with you too. Take it easy and get well soon.

Thanks so much Mara246 :) I was measured by ultrasounds and a mri but the surgeon who I met a week before the operation examined me internally and externally could tell it was a lot bigger and said scans are rarely accurate. I could feel mine was bigger because I had a lump sticking out quite high up but was also feeling pressure on much lower bits. i thought maybe I had 2.
That's when the possibility of a vertical cut was mentioned. The surgery went well but obvs it is major and because of my age was the best option but maybe not for everyone. Already feeling the benefits as my left ankle which was swollen and grey/purple now looks normal and is dramatically smaller

@SN48 hope you are recovering well.
I have fibroids too and am having an MRI on 21st but having seen your comment about scans being rarely accurate I am wondering what the point is?! And also concerned if there’s a lot more going on in there than will be seen on the scans (also had 2 ultrasounds last year). I have started Prostap injections as of last week…

Hi Alloveisbeautiful I guess everyones experience is different, my body was telling me mine was bigger but everyone I spoke to except for the surgeon stuck to the original size. The mri can only possibly give you more information and an insight to what is going on maybe.I totally understand your concerns but I guess the mri can do no harm, also are you able to talk it through with your consultant? Take care :)

Hey everyone! Seeing the posts on the scans I thought I’d update you. I took the Ryeqo which was AWFUL and made the bleeding worse! I had a major breakdown at my gyno appointment and she booked me in for a hysterscopy which showed a fibroid the size of a tennis ball inside the uterus. We thought we were dealing with submucosal fibroids (3) she removed the one inside but she said reyqo doesn’t help with fibroids inside the wall… just incase that helps anyone. Sending hugs to everyone x

Hi everyone, I was wondering if I can get some advice. I've been diagnosed with fibroids beginning of last year. I've tried various contraceptive tablets.and also tranexamic acid with medium results. I was scheduled to have a laparoscopic myomectomy in October last year and was put on Zoladex injections prior to that so that the fibroid would shrink,at that point it was around 4cm. I've had the zoladex for 4 months and the worse symptom for me was the insomnia,slept average of 2 hrs a night and felt so down. After the 4 months I went to have my myomectomy,was put under anaesthetic and then woke up to hear that they couldn't remove the fibroid that way as.it has become too big and the location is tricky. So apart from 4 months of misery,I got nothing from zoladex. Fast forward 3 and half months and two blood transfusions later, I'm being put on Ryeqo. My question is,is there anyone on here who had no results from Zoladex but then had Ryeqo and it helped? I've been told I need to take it for 4 months to see the effects. But as far as I gather, zoladex and Ryeqo are similar? I'm scared of going through the side effects for nothing. Thanks.

JustME823 so sorry you're having a bad time :( After another trip to A+E in November the consultant offered me zoladex or ryeqo to 'tide me over' until I had a date for surgery, but really to cope with heavy bleeding rather than shrink the fibroid(it was a beast so would have to come out abdominally anyway). I started ryeqo on my next period which made things worse tbh.
Ryego is quite new and I felt no one could answer my questions, so once surgery was on the horizon I stopped taking it. Definitely talk to your consultant about your fears and take your time.
i feel grateful that I'm out the other side but spent over a year feeling uninformed, scared and frustrated. Sometimes I feel they are papering over the cracks of the issue when all the patient wants is honesty and a progress plan. Hope this helps, take care :)

Hiya,

I recently got started on Ryeqo, second week to reduce uterus and fibroids in size before surgery. Has anyone experienced heart palpitations during treatment?

I’ve not tried Ryeqo, but found all forms of hormonal bc made it worse and it was just about manageable with the help of mefenamic and tranamexic acid.

just had my surgery a few weeks ago and the Dr did a great job.

good luck OP there is light at the end of the tunnel.

Sorry it’s not working.
they should move you to open myomectomy which I had it it’s fine.

the result from ryeqo seem all over the place. Have you tried mefenamic?

@beAsensible1 Hope you're recovering well from your surgery :))

I'm taking Ryeqo to treat endometriosis, before surgery. I've been diagnosed in the past with fibroid but they couldn't see any this time on the ultrasound. I'm waiting on results from MRI. I've not had the bleeding issues others have mentioned as not had a period for 4 years.
The side effects of the drug are now starting to play out... with crazy dreams, vision issues and mood swing.. feeling and being very reactive rather than my usual chilled out self.

Is anyone else taking for endo?? Or experiencing something similar

I have been on Ryeqo for 4 months, previously for a year on POP (desogestrel). The second month was going great until I forgot to take one pill and was 12h late, after that I have been having heavy bleeding like never before. Horrible blood clots and very red liquid blood rushing out. I've started having back pain and bone pain in my legs which I'm not sure if it's related... Very disappointed as I thought Ryeqo was going to be better...
I went through an open myomectomy a few years ago but they couldn't access the myoma as I had endometriosis and a lot of adhesions. Hysterectomy is probably not an option because of that reason. I thought Desogestrel was bad because of constant mild spotting, but I wasn't as swollen and wasn't in pain.
Thankful to have found this thread! I have a follow up appointment with gyne at 6 months and I think I'll go back to POP or try something else!

Hi everyone, I've got a scan coming up to see if anything has changed size wise, fingers crossed but to be honest I'm not getting my hopes up. Been on Ryeqo for nearly 3 months now, the things ive noticed so far is that t's affecting my sleep, my skin ( getting acne).and my mood. I wasn't bleeding for the first month,then started bleeding again ( a few heavy bleeds). I am wearing incontinence pants every day now as when/if the heavier bleeds happen,normal pads have no chance. If the scan shows the size of the fibroid has not changed, I will be asking some questions. Hope everyone's ok. X

Hi @JustMe823 I had very similar experience... Same with incontinence pads. I am on the 5th month of Ryeqo and I'm super careful to take the pill at exactly the same time every day (early morning). I am spotting everyday (evenings) but not heavy, thankfully! I think keeping the timing exact really helps! Good luck with the scan, let us know! I will have mine in a month, I really hope fibroids have reduced.

Had the scan, size of fibroid hasn't changed. Waiting to hear from my consultant I guess what they're going to say is to keep taking the tablets, not sure I'm up for that. Hope everyone's ok.

Good Luck. I am on month 2 of taking it. I have had 2 slight bleeds about 35 days apart. Try and take at the same time. How long should I take Ryeqo to see a difference? I uave large 10cm fibroids but no heavy bleeding. I have the Merina coil.

@JustMe823 I was in a very similar situation but am 3 months post surgery now and my quality of life has improved so much. I didn't realise how rubbish things were! I'm obvs not being bossy but I really hope things improve for you soon and please don't settle for just putting up with things, take care :)

Hey everyone! I love to have found this thread because i have been feeling very alone about this lately. I’m 22 now and found out about my intramural (inside the wall) 8 cm fibroid at 19, had a really awful time last year where i just barely didn’t need a blood transfussion after a week of crazy bleeding and clotting, and was anemic for 4 months after that. Now it is a little better i have a Mirena coil and have tranexamic acid to take when it gets that bad again (which reduces the bleeding a lot by the way), however i’m still spotting/bleeding sometimes for 6-7 weeks every day or every other day which really messes with my lifestyle (like i’m still in my twenties it’s crazy i can’t even leave the house for weeks at a time). Hysterectomy is kind of out of the question for me since i’m young and might want children, myomectomy is almost impossible too because the fibroid is inside the wall. My doctor suggested starting on Ryeqo on my last visit, but on this thread i read that Ryeqo might not work on fibroids in the wall and it puts you body in menopause?. Also it’s so scary to read how it got worse for so many of you with Ryeqo. When i had to go to the hospital because of so much bleeding and clotting ( the size of plums by the way) and thinking i was dying was literally the most traumatic thing ever and i don’t want to live through that again. Did anyone else here have experience using Ryeqo with intramural fibroids? Does it help anything and is it worth it?… I live in norway and the medicine is also pretty expensive for a months worth, which is stupid to pay as a college student if it does not help me at all. Hope everyone is doing ok!:)

OneQuickFish I’m so sorry to hear about your condition. I’m 47 and living in Norway too. I’m scheduled for MRI to see if the Ryeqo has had any effect on my large uterus and fibroids yet. I’ve been on meds for two months now , and been bleeding/ spotting for 6 weeks now. The good part is I’m not in pain except I recently developed pain in my right leg, not sure if it’s related to Ryeqo.
l will keep you posted. Best wishes everyone 🤗

Hi @OneQuickFish I also have an intramural fibroid, it is the one that gives me more problems but it didn't stop me getting pregnant and having my baby, fortunately. I've had it for years, that one and all other kinds (subserose and submucose too). For years I've been on anticonceptive pill to help keep the fibroids from growing. It did stabilize them and they've been fairly the same size for years. If you don't want to use Ryeqo you could try any other pill? Ryeqo is apparently only recommended for periods of 2y max. I will have a scan in a couple of weeks to see if it has reduced any of the fibroids after 6 months, I will let you know the result! also, I've stopped spotting... for a couple of weeks now. I am super exact with the time I take the pill everyday!

Yes i have this experience i had first surgery in 2015 they removed 4 fibroids now i am on the list for another surgery. I am on ryeqo pills since november last year i was without bleeding for 3 months now i am in pain every single day every 3-4 days i can see some blood small clots and than brown discharge i have pain in my leg i have troubles to handle the pain for 3 days i was constipated so i found also heameroid. I am struggling a lot

I am on my day 6 of Ryeqo and I just started bleeding 🩸 and my periods are supposed to start on the 8th of next month but I just started bleeding ,might be one of the side effects so I’ll see how long the bleeding will last and if I can consult with my gynecologist,I have stage 5 fibroids .