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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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  • ronke74788
    ronke74788 asa93843

    Posted

    Hello,l have read about the esmya tablets for fibroid shink,how can l get it,l have uterine myoma size 31.
  • annette21382
    annette21382 asa93843

    Posted

    Hi I have been diagnosed with 4 large fibroids since 2014. The largest is 15cm. Initially for the first 2 years I had no symptoms. I only new I had them as I could feel a small lump in my groin so went for tests and they were diagnosed. I have had only a few heavy periods but more recently in the last few weeks I have started to get really bad pains in my stomach, lower back, pelvis, hips and both legs. The pain sometimes has been so bad I’ve had to lie down. I was initially put forward for UAE but was refused due to sizes and location of my fibroids. On my last appointment my consultant advised my only option was a total hysterectomy. I am a young and fit 47 year old and have no plans for more children. That does not mean however I want to go through major surgery. My consultant advised my water pipes are either side of the largest fibroid and surgery could be tricky as it could make me incontenent. I don’t want survey and am waiting to find out if i can have Esyma. My advice to anyone who is recently diagnosed is to go for a simple option whilst you can as the larger they get the less options you have. I want to say thank you to all the wonderful women who have posted their experiences as the information has been invaluable to me and others in helping us make up our minds. I would love to hear from anyone who has had a full abdominal hysterectomy or who successfully took Esyma and then went into menapause 
    • barbara91702
      barbara91702 annette21382

      Posted

      Hi Annette, I am a fit and healthy 51 year old lady who suffered for around 3 or 4 years with very similar symptoms you have described, I was told I had large fibroids and was put on Esmya to try to get through to my menopause! To be honest Esmya was a God send as I was bleeding constantly for months so the break was amazing as while I was on them I felt so much better (did suffer with dizziness, tiredness) so was very grateful, however when I had the two month break I was in agony and just could not cope any longer.......I wanted my life back......so made the decision to have a TAH! That was four months ago and I have never looked back! It turns out I also had adhesions from my c section that had stuck to my bladder so Esyma or menopause was never going to relieve my pain, I felt better from the moment I woke up from the op. I was so much more mobile than I expected and never really felt any pain, I only wish I had had it done sooner. They say it takes six months to feel 50% better after this major op.......well I am only four months after and can already feel the benefits, no more pain, no more constant bleeding, no more heavy feeling in tummy, pelvis and legs.....and the energy is starting to come back!! I would say that you are right, look at your options.....but don't leave it so long (like I did) as your options really shrink when the fibroids are large, I only really had this option left in the end, and now know that waiting for mother nature to bring along the menopause was a total waste of time!! I am so glad I have had this done, it is a big decision, but a great one for me!!

      I hope this helps, if you have any questions let me know, I asked loads and really helped me talking to others (got some excellent tips too).

      Take care,

      Barb

    • annette21382
      annette21382 barbara91702

      Posted

      Hi Barbara, thank you so much for your reply. I wanted to know the pain you  had when you was off Esmya was it worst than the pain you had experienced before taking Esmya and did they say why? Also how long was you  in hospital after your TAH and how long could you do literally nothing. I work and go to the gym and even after giving birth I was back at the gym after 6 weeks. My pain currently is sporadic and manageable, I’m concerned my pain could get worse after Esyma is this what you found or do you believe your scars could have contributed. Please feel free to give me any tips or advice all is very welcome. Thank you again and just glad you have your life back and your pain free xx
    • barbara91702
      barbara91702 annette21382

      Posted

      Hi, if I am honest I did not cope with the break well, the pain was unbearable and I ended up on morphine! The fibroids did not shrink and the adhesions were causing me a great deal of pain so it is tricky to know if Esmya would of worked better if it had just been the fibroids on their own. The op took around 4hours because of the mess but I felt better straight away, the medication is done in such a way I never felt any pain and was up the next day walking around. I did need a little help getting the old bowels working again, but nothing lactose couldn't help with very quickly. I was in hospital for 4 days and was mobile straight away, only slowly walking around the house for the first few days, stairs were no problem for me at all, I was surprised how "ok" I felt! I did not drive for 8 weeks, but partly because of the adhesions, the op was very intrusive and I was so worried about causing adhesions again I really took my time to heal, you only get one shot at this and I wanted to give myself the best chance to heal well. I also returned to work after 8 weeks (had done some work from home before that too) and found that as I had a desk job it was not too bad, I have a longish drive in and found that slightly uncomfortable at first, but soon that passed too. I have not started to do much exercise yet and only really walking as I find I get tired quite quickly, but I do know that in time that will also improve. For me a TAH was the best thing and I am feeling stronger every day. I hope this helps, let me know if you have any other questions.

      Barb x

    • annette21382
      annette21382 barbara91702

      Posted

      Hi Barbara,

      Thanks again your information is so helpful. I have decided to try Esyma as I feel I have nothing to loose and ultimately depending on how my symptoms go you have given me the courage to consider a TAH if necessary. Good luck with your recovery and much appreciation for the advice. Take care XX 

    • barbara91702
      barbara91702 annette21382

      Posted

      Hi, I would give Esmya a try as others have have excellent results and while I was on them they were a God send! Only thing I would say is take them at night as they can make you feel a bit dizzy at first, persevere as this does pass. And enjoy not having the dreaded monthly, so liberating! 😁 xx

      Good luck, I hope they help you.

      Barb xx

    • annette21382
      annette21382 barbara91702

      Posted

      Thank you again and yes I know several posts mentioned taking at night due to dizziness so have taken on board.  Just  one last thing Barbara, my consultant told me I would receive a course for 3 Months but they only gave me enough tablets for a month then told me I had to get the next 2 months from my GP, which means I could pay 3 times for one. course is this how it was for you? X
    • barbara91702
      barbara91702 annette21382

      Posted

      When you go to your gp ask for either the remaining 2 months.....or like me, I asked for 5 months (to cover the next three after the break) and my very nice go gave e them to me!! Just see how many they will give you!

      Good luck! xx

    • annette21382
      annette21382 barbara91702

      Posted

      Thank you Barbara you’ve been a great help, am gonna try I guess if you don’t ask you don’t get x
  • chris50782
    chris50782 asa93843

    Posted

    You can have a opp just to remove the fibroids if that option has been given by your consultant. Which will help save your uterus. There is no guarantee that after taking Esmya the fibroids will not grow back after time
    • annette21382
      annette21382 chris50782

      Posted

      Hi Chris, thank you but that is not an  option for me due to amount, size and location and I’m aware they can grow back once treatment ends but i want to try the least invasive option first x
  • diana80586
    diana80586 asa93843

    Posted

    Hello ladies and thank you Asa for starting this discussion, which I found while Googling everything I can find about this drug! It seems to me very little is known about it, even among the medical profession. I have multiple fibroids of various sizes and types, which have plagued me on and off for the past 10 years or more. Over the years, I have tried everything - I have been prescribed tranexamic acid and norethisterone, had two Mirena IUS inserted (the last one pushed out by a fibroid), a LLETZ procedure and two resections. I am now on the waiting list for laparoscopic hysterectomy but was prescribed Esmya by my consultant in the meantime to stop the copious bleeding (I have had two iron infusions in the past three months for severe anaemia) and to supposedly shrink the fibroids prior to surgery.

    However, that consultation was back in November and since then I have been doing more research, and discovered, as has been mentioned here, that Esmya has now been licensed for longer-term use, rather than simply a pre-operative treatment. I am also wondering if there are alternatives to total hysterectomy, such as uterine artery embolisation or laser treatment, which were not mentioned at my consultation. It may be that these are not suitable procedures for me and I end up opting for hysterectomy after all, but it would be good to discuss what options are available to me, and whether or not Esmya is viable for long-term use (I am 47 and reckon I have at least another 5-8 years before menopause kicks in).

    In the meantime, I am 2 weeks away from completing my first 3-month course of Esmya and the benefits are that I have not had a period since December - bliss! I have not experienced any hot flushes either - however, on the down side, I am very tired, have experienced some abdominal cramping and have the most appalling diarrhoea (though that could be down to a change in diet). I am hoping that the less welcome side effects subside over time.

    However, I am very nervous about what awaits me in the break, and what my first 'period' will be like. As I have been plunged into anaemia twice in the past three months just in one bleed, I am understandably wary. I saw my GP last week to get a repeat prescription and to request a re-referral back to the gynae, as I understand I should be having regular scans and biopsies while on this drug (how else can I know whether or not it's working?) and I asked him what I should expect, but he couldn't tell me. What are your experiences of the 'break' bleed? 

    Thank you all for sharing your experiences - it feels as though we are all navigating relatively uncharted territory here, and I'm grateful to have discovered this discussion.

    Sending healing and strength to you all xx  

    • annette21382
      annette21382 diana80586

      Posted

      Hi Diane, sorry I can’t add much as you are further ahead with Esyma than I am. I’m currently in my 2md month of my first course. I would ensure your consultant is advising you of all your options as I previously advised it can be a postcode lottery with some doctors putting cost before the patient. I have been taking iron tablets since before starting Esyma and wasn’t advised to stop and that helps me but I would always suggest speaking with your doctor before taking anything. Your symptoms are different to anything I have come accross so I would just make sure your doctor is aware.  In regards to checking progress my consultant agreed most women experienced shrinking after 2nd course so I will not be checked until after this time. Please report back once you have had your break to let us no how you get on. I too am nervous due to some posts I have read. Good luck hope all goes well x
    • diana80586
      diana80586 annette21382

      Posted

      Hi Annette, thank you for this. I will most certainly report back - and all the best for your journey too. Keep us posted x
    • nik21657
      nik21657 diana80586

      Posted

      Hi diana

      My break bleeds were 1st month light second month back to night pads in tge day with a very absorbant tampon changed every hour. I managed to be on esyma for 4 cycles. Now the consultant says must try something else. I dont want to im 48 and the esyma does work shrunk my large fibroid by a couple of cm and gave me precious relief for 3 months at a time . Hope this helps.

    • diana80586
      diana80586 nik21657

      Posted

      Hi Nik,

      It does, thank you - even though it's not exactly what I wanted to hear! Poor you - I guess there is no such thing here as a magic solution, and what works for one woman may not work for another. I really hope you find something that works for you - what has your consultant suggested? x

    • nik21657
      nik21657 diana80586

      Posted

      Hi diana not seeing the consultant until march, as scan was in december. I really dont want surgery, i was hoping it would disappear. I would happily stay on the esyma but its too expensive for the nhs. Im on mefenamic acid at the moment as that calms the bleeding down. Hope you are well x
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