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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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  • marie61198
    marie61198 asa93843

    Posted

    Hi Ladies!

    I have now been taking Esmya for a second month, unfortunately I have been bleeding since 2nd January. Mostly lightly but had a few sudden flooding, last one sent me to hospital where I got iron transfusion. Today, I passed a bigger blood clot, no prior bleeding, it just slipped out when I went to pee. I am worried that the Esmya is not helping to shrink the fibroids and is only making the uterus lining thicker and therefore making me bleed heavier? The last flooding was much heavier than the periods I had before starting Esmya... I am just so worried that I'm doing more harm than good. Doctors keep insisting I continue to take it and that it takes time to work. Any of you lovely ladies with similar problems, please? Many thanks!

    • rosemary97383
      rosemary97383 marie61198

      Posted

      So sorry to hear this, could this be that your fibriods has started shrinking i dont understand why you have to wait hense your body isn't use to it.

      Esmya might not work for anyone would you consider surgery eventually this whole treatment has scared me out.

      I am on 21 days of norithestone but i will be switching back to cerrazette till i see my gyenocology.

    • belinda79961
      belinda79961 marie61198

      Posted

      Hi ladies,

      I am new to this site and have just read this thread from the beginning. Thank you all for sharing your experiences.

      Marie I am sorry for what you are experiencing! I really hope it improves for you.

      I am 45 and have a 13x12x11cm fibroid, with anaemia for years, regular iron infusions and out of control periods. Gyneys have said that TAH is unavoidable, its not if, but when. I have just started Esmya 12 days ago and have found over the last week i am increasingly bloated, to the point of being painful, and have terrible (lower, middle and upper) back pain. I am also experiencing a lot of pain around the sternum and lower ribs. Has anyone else experienced anything like this? Also, i am keen to hear if anyone has had a significant reduction in fibroid size. The official literature i have read says average reduction after 4 x 3 monthly cycles is over 50%, but most ladies on this site that have experienced fibroid shrinkage seem to be anywhere from very little to a maximum of 30%. Love to hear from anyone that has had significant reduction in large fibroid. And love to hear from anyone with advice/encouragement in general! It can be a tough road hey ladies?! Look forward to hearing from you!

    • barbara91702
      barbara91702 belinda79961

      Posted

      Hi Belinda, I did 4 cycles of Esmya, I did feel better while on it and was glad I tried it but it did not shrink my fibroids unfortunately! I felt very simular symptoms to you and in the end I did opt for the TAH, I desperately wanted to get my life back! It turns out I also had loads of adhesions so Esmya did not stand a chance really!I am now six months down the line and feel amazing, after years of feeling so awful I am so grateful, it is a l ok ng road but there are success stories I promise!!

      I wish you the best of luck on this journey and hope you are feeling better very soon.

      Take care xx

  • sylvia70514
    sylvia70514 asa93843

    Posted

    Hi Asa 

    Just read through your message 

    Was on esmya for 2 cycles

    My periods went very light and that was very exciting 

    Had just one time a terrible headache and had to throw up

    Unfortunately the pills couldn't shrink my fibs was very disappointed 

    Had a surgery about 2 months ago

    Feeling much better now

    Wishing you all the best and hope the pills works for you 

    Best regards xx

    • annette21382
      annette21382 sylvia70514

      Posted

      Hi Ladies I have just received a letter from my hospital advising me to book an appointment for a blood test. Apparently there has been 1 UK and 4 worldwide cases of liver damage with women who have taken Esmya and they are stopping any further prescriptions until further notice. Apparently my partner read approximately 700,000 women worldwide have taken Esmya so 5 is a tiny amount but non the less they are being cautious. I only got my letter yesterday so will let you all know how I get on. Have 2 weeks of tablets of my first course left so will ask if I should continue taking them. If you’ve not had a letter but are currently taking Eysma speak to your doctor but my letter says if you have already stopped taking it for 2 or more weeks you need do nothing. My advice if in doubt get checked out speak to your doctor.  Good luck ladies and please post your findings on this new development xxx 
    • vicky18214
      vicky18214 annette21382

      Posted

      Oh gosh, i am currently on the 5th course of Esmya. After 4th course and doing ultrasound my fibroud had enlarged, the only reason they have started me on it again, is my periods are so heavy that i had to have a blood transfussion and had collapsed at home. As i am too weak they dont think at this point a hysterectomy is a good decision. It stops my bleeding plus point but i do have stomache pains not knowing if it's the Esmya or my fibroid causing this.

    • annette21382
      annette21382 vicky18214

      Posted

      Hi Vicky  please don’t panic as I said the numbers at present are low. Call your consultant or GP and ask for advice.  I’ve spoken with mine today and they advised it’s ok to finish my course but if I want to stop that’s ok too. I have booked my first liver function blood test for next week and have been told I will have another once I finish my course. They said they can’t advise at this stage if and when any further Esmya prescriptions will be given. I live inBirmingham UK so it will be telling to  see if advice differs depending on where you live.  Let me know what your doctors say Vicky good luck and god bless xx
    • vicky18214
      vicky18214 annette21382

      Posted

      I live in London. Am in tge middle of moving house so will have to wait couple weeks to ring ratger than consultant ill ptob ring my GP first. Fingers crossed..
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