Second round of esmya experiences

Posted , 4 users are following.

Hi ladies,

I am wondering if anyone would be so kind to share your experience of the second round on Esmya (or Fibristal), please? I am especially interested to hear from those who were bleeding during the first course and/or had a sudden episodes of flooding with large clots.

I have 15days left of my first three months round and I have been bleeding since the 2nd of January, constantly. I had numerous episodes of flooding too, controlled bt Tranexamic acid, sometimes taken for days in one go ( I have low platelets, my blood doesn't clot so this makes the bleeding worse). I wonder if the second round was better for anyone in similar situation as me?

So sorry for the long post, feeling low atm, just wish I could go back to no bleeding between cycles... thank you x

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11 Replies

  • Posted

    Hello

    I am having Esmya for past 7 months.

    I have been given an appointment for my pre assessment on 15/03, don’t know my surgery date yet though. And this is my second surgery as they could not complete previous one in 1 go. 

    Bless you. I know the feeling and completely understand what you are going through.

    My bleeding stoped after 2 months of taking Esmya. I am totally fine and haven’t been bleeding neither been getting my periods for past 5 months or so. Am loving the feeling of not bleeding or getting periods however I know it’s not nice and healthy.

    I don’t want to scare you but I have read an article couple of weeks ago that Esmya is not good for our liver. I am going to post the link underneath. I will suggest you to speak to your consultant or gp first.

    https://www.gov.uk/government/news/esmya-no-new-treatment-courses-prescribed-until-further-notice

    Praying for all ladies including myself for our speedy recovery.

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    • Posted

      Hi, thank you for sharing. I wish my bleeding stopped. It just doesn't feel right down there, I feel a lot of pressure and heaviness in my womb.

      I am aware of the esmya review. I had my blood test done last week and gp confirmed that my liver is absolutely fine. But I have a lot of side effects, muscular/joint pain, the flooding, tiredness (this will be due anemia too). How big was your fibroid and what surgery did you have, please? And what type of fibroid? Thank you smile

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    • Posted

      Hello

      Am glad you were already aware of the liver issues which I wasn’t and still haven’t gone for the test either sad

      Weakness and all is due to anaemic issues. I had same issues and use to go for transfusion every other month.

      My fibroid is around my uterus and I don’t have children and it was 5cm big also bcos of this issue I cannot conceive unfortunately and I am 39 already sad

      The surgery I went though was Myomectomy.

      I hope we all feel better soon x

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    • Posted

      Hi Mas,

      I am shocked they didn't contact you! But when I spoke to my gp, I felt I knew more about it than him... I do my research plus I am on a fb group too where we all share important info like this.

      I hope you will have success with your second surgery! So sorry to here that you are unable to conceive...will the surgery help with that at all? (You don't have to answer if you don't want to, I know how sensitive these things are ??). I wish you all the luck anyway, never stop believing! I know it's a cliche but what else do we have left than a belief that one day, we all will be well again? Thank you so much for replying and keep strong x

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    • Posted

      Thank you for this info - I told a liver specialist last summer I thought my enlarged liver cyst was more to do with being on Esmya than he thought. You just know the dates & times I've had a number of scans for various things. I've had right sided pain only a few months after finishing the first lot & no medic had any idea. I did have an MRI on the enlarged cyst last year & one would have thought any other liver issues would have be discussed then. However I will be writing to my liver consultant about it, I will also be contacting my gp & getting my liver levels checked. However I would like to get in touch with the investigating commission about what has happened to me. As although I knew I had cysts I was told they were small, wouldn't be a problem & not to worry about them. I believe being on this drug has effected one very negatively, made it  grow to a very large apple size & typically in a dangerous place pressing on the IVC. I believe Esmya didn't help me any more than transenamic acid would have, as there was no size reduction, but did help with bleeding, but the side effect could result in really complex liver surgery.

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  • Posted

    Can I just say, I have had 4 courses of 3 months each of Esmya & I now have a huge cyst in my liver in a really dangerous place, pressing on the IVC (main artery supplying blood to lower half of the body) - I did not have this problem before taking the drug. (And yes I had images of my liver pre Esmya) It was initially licensed only for 3 months but when I was on my first course, it became licensed for up to 6 months use, then after I came off Zoladex it seemed that it was licensed for 12 months so I was given another 6 months of it!

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    • Posted

      I am so sorry to hear about your health problems! It's exactly what I am afraid off, you go to doctors with one thing, they give you meds they don't know and you leave with another thing at the end.... Thank you for sharing! I am seeing a different gp on Monday, a female one. Hopefully she will understand my issues and struggles. I am now 90% sure I want to stop taking Esmya as I feel it's not helped, really. The bleeding is leaving me anemic with low blood platelets so I can't even have a surgery at the moment! God forbid I would need a rush operation.....would probably bleed to death. I am only 33yrs old, no children, so much more I want to do in life than dealing with this every day sad What are the docs going to do to help you? Are you off the esmya now then?? Hope you will get through this soon! x

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  • Posted

    Hi Marie,

    Yes I'm off Esmya, thank goodness, I had 4 lots of it. I started in August 14 & ended around last September 17 with gaps & Zoladex in between, however. I do have liver symptoms which is a bit worrying. I have had right sided pain since June 15 that no-one has accredited to anything yet it is persistent, I am so very tired & my skin colour has a more yellow tinge to it than it used to & I have noticed that for well over a year. I have made an appointment to see my GP next week to speak about testing my liver enzyme level. As I was aware I did have a few small simple liver cysts but my dr said not to worry about them at all, so I simply didn't. Now one of them is the size of an apple fluid filled & pressing on the IVC, & grown to this size since I have been on Esmya. Funny when I went to see a liver consultant I said actually do you think the rapid & massive increase in size could be to do with the Esmya, as I was keen to find out why I had this right sided pain. Even though information online seems to say you can get right sided pain with simple liver cysts, he didn't seem to think so, now that all this has come out he might well! So I would say that for people with liver cysts that there is a probability that Esmya could increase their size. Typically the one that has increased would be in the most dangerous place it could be! Sod's law! I will be writing to the investigation to advise them what has happened to me whilst on this drug it may help them. What I cannot understand is WHY patients haven't been contacted by their GP's or consultants who have been on Esmya & recently finished, or who have presented with new liver issues whilst on the drug! I'm a bit disappointed in that, as I feel that should have been done, not only to help protect us, but others, who may have to think twice about a drug treatment.

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    • Posted

      And thank you Mas for putting the link on here, very much appreciated indeed. try to get in with your GP & just get checked out you are ok. x

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    • Posted

      Hi Heather,

      Thank you so much for your reply! I am so sorry to hear about your cyst sad  Upon reading your comment I have decided to stop taking the pill. I had enough of being a guinea pig!! The doc told me that the esmya takes a long time to work so I can't see results after the 3 months course. Well, so far, I just had all the side effects- sore head, extreme tiredness, muscular pain, hot flushes...and the bleeding. I think the meds just not working for me. If it did, I would not bleed this much. I am sure my uterine lining got thicker and that's the cause of the constant bleeding. Really don't need yet another problem! I will get rid off all meds and see what happens. I have been on contraception for 17 years so this might well contributed negatively to my hormone imbalance. I want to see what my body's natural state is. I will seek second opinion, even if I have to go private. It will be a long road but I feel it's a right decision. Good luck with treating your health- I wish you all the best! Many thanks for your comment again smile x

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  • Posted

    Hi Marie, Have you liver levels checked with your gp & look into alternatives. The uterine lining can thicken as a side effect of Esmya, but it usually returns to normal on stopping after a few months. However you can also ask for an outpatient hysteroscopy, to check the cells of the lining. By the time you see your gynie & get in for the procedure the effects of Esmya will be much reduced if there at all. Good luck.

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