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ESMYA experiences

Posted , 41 users are following.

asa93843
asa93843

Hi ladies!

I went to a gyno last week to discuss treatment for my 5x7 intramural fibroid which causes me heavy bleeding and sometimes a pressure towards my tailbone.

I was curious about having a embolization but my gyno thought that Esmya would be better for me to start with.

I have so many questions that the gyno couldn't answer (!) so I hope that you who have been on Esmya would like to share your experiences and can help me answer some of them. I am mostly scared of side effects, if it will affect my work, libido etc.

The questions I have for you are the following:

After finishing 3 months on Esmya, how was the bleeding? Was it much lighter after that?

How much did your fibroid/fibroids shrink?

What side effects did you have? Were they transient?

Has anyone been on them for longer than 3 months? If so, did the fibroid continue to shrink?

Will the fibroid stay small and bleeding continue to be less after I finish Esmya? Is it worth taking?

Is it safe? Would you recommend it?

I might add that I'm just turning 40, have to kids and want to avoid having a hysterectomy.

Looking forward to hear about your experiences.

Thank you!

1 like, 88 replies

88 Replies

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  • barbara91702
    barbara91702 asa93843

    Posted

    Hi, after a year or so of dreadful pain and bleeding I finally found out I had an enlarged uterus and fibroids. I was put on Provera first which did help some, but I kept bleeding. I am a ripe old age of 50 so my doc would rather avoid a hysterectomy as he is hoping to get me to menopause without surgery. He has now put me on edema and although I am only two weeks in I am feeling heaps better, no bleeding, no full feeling in stomach, no feeling like I need to see all the time and most importantly no pain! I am hopeful it will continue as I have been told that this drug has now been approved for long term use and my mean I will make it to menopause without needing surgery! It is still early days but this has given me some hope for the future and would welcome other experiences of people who have been taking Esmya longer than me. Thanks for reading this.
    • christine65130
      christine65130 barbara91702

      Posted

      Hi Barbara, hope Esmya works for you, I have taken it for 3 courses. The fibroids do keep growing back though, and as I have to buy my Esmya, I'm not sure it's worth it. If I could get them free then I would take them as long as I could. But at 59 I still have fibroids and they still make me bleed.

    • barbara91702
      barbara91702 christine65130

      Posted

      If I was in your position I would think exactly the same. I do wonder how long I will be able to take this for ( who knows when menopause will come along, could be years away!) I will take them as long as poss I suppose! I wish you well.
  • patricia27802
    patricia27802 asa93843

    Posted

    Hi ASA

    I have just finished 3 months of Esyma and it has not worked. It caused hot flushes and extreme tiredness but made no difference to the size of symptoms. I asked the Gynocolgy and he said it never works the 1st time. I asked would it work a 2nd time and he said for most women it takes 4 attempts.

    He may have been taking rubbish of course to get me to take a 2nd course.

    So you should ask your Gynocologist the same questions.

    My theory and this is not based on fact.

    I think that the only women it has worked on are the women who go into Menopause straight after taking it. I would love to speak to a woman who it has worked on who is not in Menopause.

    However iff you are young it may be different I'm nearly 51.

    Ask loads of questions and do loads of reasearch.

    Good luck

    • jess48383
      jess48383 patricia27802

      Posted

      I've actually rea a few clinical reports on Esmya and what I've taken from them is that while it is very effective at stopping bleeding, it's only got a small rate of success in reducing the size of the fibroids. It's only the "secondary test of effectiveness".

      Funny that your Gyno said it doesn't work the first time around. I had no success either, and my Gyno said that there was no point trying a second time. He said most of the research is on smaller fibroids whereas mine is 11-12cm. Even before I started treatment he said he contacted the makers of it to ask whether it worked on bigger fibroids (i think i was the first person in Aus to use it actually as I got it right after it landed in Australia) and he said they said it would. But I don't think he was too confident. 

      It costs $900-$1000 here in Australia as it's not subsidised by the government yet so trying it a 2nd time at that cost when it didnt work the first time around is a bit stupid. BUT if in your country it's subsidised by the government and is relatively, it might be worth trying a second time to see before going through the pain of a myomectomy. (Although that being said, I wish I could rewind to October last year and opt for surgery straight away and get bac this entire year!) 

      All in all, it's a complex situation with no win for any of us. Do what feels right for you! 

    • julie51050
      julie51050 patricia27802

      Posted

      Patricia I have just finished a course of Esmya  2 months ago and scan revealed that its made no difference to mine either , I'm 53. The consultant has suggested a hysterectomy or another few courses of Esmya.He also told me Esmya is not about shrinking them its more about controling the symptoms. Not decided what to do yet although lost some weight through dieting and I must say its improved the aches and pains I have been having may continue along this route instead of pills or surgery.

    • sue09467
      sue09467 patricia27802

      Posted

      Hi Patricia. I have an 8cm fibroid and am about to start my second three-month course of Esmya. I had one main side effect of dizziness that went in a couple of weeks, a bit of fatigue and a few "hot moments" while I was on it.  I still had one light period and some days of spotting on it but it was so much more manageable. I do feel a little less bloated so hoping the fibroid has shrunk a bit. I see my consultant at the end of July to discuss all of this but have already been told via my GP that I won't be scanned until I have completed my second course.  From this I guessed the shrinkage could be more significant from the second course onwards and that it is as much about reducing the symptoms.  My worst problem was restless legs due to low iron and having a break from heavy bleeding has helped that considerably.

      I am optimistic that the second course will have a positive effect on shrinking the fibroid and the reduction in bleeding is so very welcome.  

      I am 51 so hoping I can take Esmya intermittently until I hit the menopause and hopefully avoid surgery. 

      I will post again after my second course and scan. 

    • barbara91702
      barbara91702 sue09467

      Posted

      Hi Sue, sorry to butt in, but like you I am 51 and just finished my second course and have felt much better on Esmya, albeit a bit tired and have spotted on and off throughout......but Sapporo much better than the constant bleeding, pain, backache, pain in lower back legs and pelvis.....etc! I have been told I can only have four cycles of Esmya and have been given my third ready to start after this break.....is that not the case? I have been told my next option is to have a hysterectomy as Esmya is not a permanent fix! I just want this to end tbh, seems to be going on for the last three years. I just wish I would start my menopause, but no sign yet!!

      Barb xx

    • sue09467
      sue09467 barbara91702

      Posted

      Hi Barbara. Sorry to hear you have similar problems.  Glad you have been feeling better on Esmya. I will ask when I go back to my Consultant next month but thinking I will take the maximum number of courses allowed and hopefully the menopause won't be too far away. My sister was 46 and my mum was 49 so I think it must be just around the corner fingers-crossed.  Like you I am ready for the menopause now as it will solve everything. 

      Thanks for your reply xx

  • b91902
    b91902 asa93843

    Posted

    Hello,

    In answer to your questions:

    Im 38 with two children and have one fibroid of 7cm and another small one. I finished my first course of Esmya 2.5 weeks ago and I have now been soaking thru a super plus tampon every half an hour for three days! I have never ever had bleeding like this in my life, even before the Esmya!

    My scan last week showed a very minor decrease (approc 1cm) in my firboid but the gynea wants me to have another course of Esmya in two perids time.

    I actually really enjoyed being on Esmya, as like others said, it was a break in the bleeding.I had naseau and dizziness for the first few weeks but then nothing!

    Has anyone else had any huge increase in their bleeding after Esmya? Im really at a loss as to what to do as even mefanamic acid and the nano pill dont do much! Its making me very unhappy and embarressed as I have leaked everywhere so many times since Sunday!!

    Thanks

    Is it safe? Would you recommend it?

    • barbara91702
      barbara91702 b91902

      Posted

      Hi, sorry to hear you are having these problems, so awful to be going through this but you are not alone! I have done two courses and during the break I had dreadful pain and bleeding for much of the two months break, but it stopped again after a couple of weeks of taking Esmya again. I believe it is safe, but I have been told you can only do Four cycles....and have no idea how I would cope without them!!

      Good luck xx

  • paula5086
    paula5086 asa93843

    Posted

    Hi ladies,

    I received my Esmya tablets today and just waiting for my period to start so I can start taking them but I'm abit hesitant as im so worried about the side effects

    I'm 32 with a intramural fibroid measuring 9cm by 8.5cm by 6.5cm and I haven't had any children yet.

    I'm scared to take these pills as working in finance it's our busiest time of year about to start and then in August my husband and I are off on our honeymoon and don't want the side effects to interfere with that .... but also know time is critical as we want to have a child but don't know if delaying Esmya is a good idea esp if it shrinks the fibroid....

    With the side effects did anyone experience the acne and weight gain... after trying so hard to lose weight , putting on weight will hurt my confidence and then the experiences everyone is putting on here about heavy bleeding after it finishes will be horrible as I will be travelling once I finish...

    Not sure what to do ??

    Did most of you take the tablet before bed so it didn't affect you as much with the dizzy and tiredness??

    Thanks 🙏

    • christine65130
      christine65130 paula5086

      Posted

      Hi Paula, yes I took them at night and that helped. I never noticed any acne, maybe a little weight gain but to be honest it didn't drop off me once I stopped taking them! 

      I found that I didn't bleed for a couple of months after stopping them, and my bleeding has always been less since I first started taking Esmya. It could be different for you, you're a lot younger than me! Best of luck anyway, hope you are feeling fine for the honeymoon x

    • b91902
      b91902 paula5086

      Posted

      Yeah I took it at 9pm each night but the side effects for me really didn't last that long. It was so bliss having no periods that I revelled in that instead!

      My weight probably fluctuated by a couple of pounds but I didn't have any acne so on the whole there really was nothing to worry about with taking it.

      X

    • paula5086
      paula5086 christine65130

      Posted

      Thanks Christine,

      Sounds like taking them at night will be the way to go and hope that dizziness headaches won't impact my work....

      Just super nervous about taking them as I actually never been in the pill or any medications before as side effects always put me off.

      My periods have never bothered me either as I was reading other ladies and how they are so heavy due to fibroid but I guess to me it's the norm and don't know if mine actually is heavy.... but will be nice not to have any on the honeymoon!

      End of the day the docs want me to try Esmya to shrink it and then try to conceive before any operations as we haven't tried to have a baby..

      Has anyone here had a child with a large size fibroid and everything was ok???

    • paula5086
      paula5086 b91902

      Posted

      Thanks for the reply smile and good to know that all the side effects they list on the pamphlet aren't going to necessarily be experienced 🤞🏼🤞🏼🤞🏼🤞🏼 Fingers crossed it goes ok for me , just so damn stressed that even my cycle is out of whack and doesn't want to arrive this month!

    • sue09467
      sue09467 paula5086

      Posted

      Hi Paula,

      Like you, I was very apprehensive about starting Esmya as I don't like taking meds but I have found it a really easy drug to take. I felt a little bit of dizziness and tiredness to start with and so took it at night, however, these side effects soon eased off within a week or so. I haven't had any acne, I may have gained a couple of pounds in weight but I actually feel less bloated on Esmya. When I came off it my periods went back to the way they were before. I've just started my second course now and to be honest I couldn't wait to get back on it. I thought it was well worth giving this medication a go to shrink the fibroid rather than having an operation.

      Good luck with everything x

    • sylvia70514
      sylvia70514 paula5086

      Posted

      Hi Paula, I have just finished with my 3months course of esyma and off for 2 months, that means I will start again in august. Well I had no side effects, had a headache only once and was very nauseous but them after everything was normal, my periods were quite light, which is very good.

      Went to see my private doctor for a check up and apparently there hasn't been any changes in size

      Am only 27 years and would really want to have lots of kids.

      I think you should stay positive and hope it works for you as we all are not the same.... Best wishes xx

    • paula5086
      paula5086 sylvia70514

      Posted

      Hi Sylvia,

      Thanks for sharing your experiences with Esmya and that's a shame it didn't shrink the fibroid sad fingers crossed for the second round and that it works better.

      Do you mine me asking how big yours is and what kind?

      Do you think you will have to have surgery in order to have kids one day??

      I have decided to not take it until I'm back from our overseas honeymoon and plan on trying to get pregnant with the fibroid and see what happens... if nothing then I will try Esmya end of September

      Xxx

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