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Withdrawal of Esmya and the whole liver issue - thoughts?

Posted , 7 users are following.

sophie38439
sophie38439

Hello ladies

I've just found out that Esmya has been withdrawn since February 2018 by happening to stumble across this news on the internet. I did one course of it which didn't work anyway, in fact largest fibroid just grew even more. I'm on the waiting list for sub-total abdominal hysterectomy after seeing both NHS and private consultant for a second opinion.

Anyway, it appears we now have our livers to worry about as well - oh joy!

My first diagnosis scan for fibroids showed a liver cyst as well. But nobody told me about it until being seen privately beginning of February...by this time I'd just finished a three month course of Esmya in January ......

My question is.....after August's scan and subsequent follow up with NHS consultant to discuss findings, why wasn't my liver cyst even brought to my attention firstly, then to be advised I could try Esmya?! Either liver cysts aren't considered a liver problem (fair enough) or my scan wasn't read properly by the NHS consultant so Esmya was given as an option. It clearly states on the paper that comes with the pills under people that shouldn't take Esmya ...."people with liver problems".

I'm hoping my blood tests, that I'm insisting on having, come back clear! Had another scan in February to see Esmyas effects and I asked her to look at my liver which she did thoroughly. I'd like to hope I'd have been told if there was anything to worry about, so I feel I'm worrying about nothing, but am still annoyed with lack of information about all of this issue ....why has my doctor not asked to see me?

Love to hear your thoughts!

As if we don't have enough to contend with 😮

0 likes, 18 replies

18 Replies

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  • Guest
    Guest sophie38439

    Posted

    Morning Sophie 

    thought I would update you on my current health issues with Esmya....  I was rushed into A&E on Saturday night as I was bleeding so heavily.  I was unable to get off the toilet and anytime I did I left a trail of blood from ensuite to my bedroom...   I then decided I would try a bath to try calm myself relax was horrified to see the amount of clots and blood pouring from me.  

    Nothing was stopping this Supertampons & towels didn’t help in anyway still I was gushing..  I decided to ring NHS24 to which I was advised to get to AE right away.  My partner was offshore so my good friend rushed to my aid drove me the 20 miles to my local hospital.  

    I sat in A&E for 4 hours they were fantastic taking blood samples urine samples put me on a drip..  Told them all about the Esmya medication I had stopped taking after nearly a year.  

    I was released last night teatime so now home but that is that is a warning to others out there and the dangers of this drug..  

    Gynaecologist could not believe the blood I was loosing and size amount of clots this was all because of the thickness of lining of womb which was 4.5cm.  She gave me an internal examination it was so uncomfortable and I felt so disgusting embarrassed..   There was a lot of blood everywhere as I said to her jokingly it looks like there’s been a murder...  

    after a very painful injection of Decapeptyl and Tranexamic Acid tablets I was released now back home exhausted continuing my course of Tranexamic Acid tablets until Thursday. 

    Im back in next week for a Hysteroscopy with same consultant to have a look as apparently polyps fibroids tumour who knows.  

    My consultant refused to give me a hysterectomy back in 2008 I was 38 divorced no kids..  She then fitted Mirena coil which I had from 2008 -2017 until removal then Esmya was subscribed.  

    Bearing in mind I never really had a period bit spotting during Esmya but to endure what I’ve just been through I for sure woukd not wish that on anyone...  Nor do I want to have heavy periods either it’s ruined my life.. 

    few options on table now that the Gynaecologist has seen the damage that this medication has done.  One option is a hysterectomy or injections to bring on fastrack menopause. 

    Regards 

    Morven x 

    • sophie38439
      sophie38439 Guest

      Posted

      Hi Morven

      Oh my goodness you poor thing. Nobody should have to go through what you've been through, the pain and humiliation. Your body was just trying to get rid of the damage Esmya had done and you had to suffer it all 😣😣

      Did Esmyaya even shrink your fibroids? Will you still be going ahead with the Hysteroscopy now or is there no point?

      My decision to go with the recommended (two opinions, one paid for); abdominal hysterectomy is that I'm 46, could be 10 years away from menopause, might not be...who knows. My fibroid did not respond to Esmya, the big 10 cm one or the numerous others. The bulk of my uterus is too big to come out vaginally. I'm done with my kids. I dont want to muck about with one treatment after another with the chance it won't work or the fibroids even grow back. If there's nothing for them to grow in, they'll never return. No more discomfort, a free bladder, no more periods. Yes it's a long recovery period but weighing it all up it could all be over and done with quicker anyway. These are my thoughts and are by no means for everyone. Lots of factors to take into account, age, children, type of fibroids etc etc, it's a minefield.

  • victoria_70845
    victoria_70845 sophie38439

    Posted

    I am not sure if it’s related but while I was on esmya a small cyst on my left overy grew to nearly 7cm and my gynaecologist was quite concerned about it. I came off esmya after only a 3 month course in December and on my last scan it had reduced right back done to less than 1cm. 

    My fibriod also increased in size..... now waiting on op date.....

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