Withdrawal of Esmya and the whole liver issue - thoughts?

Posted , 7 users are following.

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I've just found out that Esmya has been withdrawn since February 2018 by happening to stumble across this news on the internet.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 😮

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  • Posted

    I took it for 2 years 3 months on 2 months off. Have now had a liver function test and i am waiting for results. I didnt realise at the time it was so new it had not that this could happen. I was not planning on being a guinea pig. My fibroid did shrink but will grow back. Feel like i wasted my time trying to not have surgery when now i will need it and could have damaged my liver .
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    • Posted

      Hi nik21657

      Yes guinea pig is a correct description isn't it 😶. Please let me know how you get on and I'll do the same. Fingers crossed it is nothing to worry about!

      Xx

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    • Posted

      Hi my liver function results came back raised so they are testing again in 4 weeks. So cross we were never warned. Hope everyone else waiting for results has a good outcome.

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  • Posted

    Hi Sophie 

    I have been taking Esmya for just under a year owing to uterine fibroids and only discovered about the withdrawl of Esmya when I joined this forum a few weeks ago. 

    Infact i had just under gone an ultrasound and transvaginal procedure as was told that I would need to see the Gynaecologist asap.  I already had my appointment booked for the following Friday.  

    Not good news I now have to go for a pre op assessment this week and now classed as a Category One patient meaning they need me in for a hysteroscopy to remove what was described by Gynaecologist as an abnormal thickness to the lining of my womb.  Infact it’s 4.5cm thick.  

    There’s is also what she described as a darkness behind this the size of a satsuma and unsure as to what it is...  could it be a fibroid tumour cyst polyp?  She does not know herself until further examination by hysteroscopy. 

    I have felt very low unwell for atleast 6 months now and back an forth complaining of pain in kidneys god knows how many times to my local gp practice..  never once did they ask about Esmya.   They just chucked Trimethoprim at me thinking I had a UTI even though my urine samples turned out negative no infection.  

    I have still never received an official letter from the NHS regarding the ESMYA being withdrawn and the Gynaecologist is looking into this as to why my doctor has signed off prescriptions for this and the local chemist has issued these. 

    I will keep you all posted 

    regards 

    Morven xx 

     

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    • Posted

      Hi Morgen

      Gosh that is awful. Why are they not informing Esmya ladies of this withdrawal?

      The Esmya, I guess, caused the thickness you're experiencing? I know after just three months of it the period after was horrendous. It really does make you wonder what the benefits of it are anyway doesn't it?

      Good luck with the hysteroscopy. Keep us posted.

      Sophie xx

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  • Posted

    Hi , have you thought of having an MRI instead to see what is inside , rather than hysteroscopy. It may be more money but it should clarify more . hysteroscopy is ok if the MRI had shown there is a submucosal fibroid to be removed If under a certain size and then have it removed that way.
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    • Posted

      Hi the reason for hysteroscopy is so they can remove this thick lining and I presume whatever else is there. 

      I will I’ll be sure to ask about MRI at my pre op appointment though see what they say 

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  • Posted

    Hi Sophie,

    I'm really interested to read your post. I too have liver cysts. After an ultra sound (on the fibroid) a number of years ago, my GP said, "harmless liver cysts nothing to worry about, fairly common". So I did worry for a little while & then out it to the back of my mind. Fast forward August 2014 prescribed Esmya, which between then & August 2017 I'd taken 4 courses of so 12 months (along with 6 months of Zoladex Implants somewhere in between) After reading the "info" I did flag up to my then gynie re liver cysts & was told, don't worry it'd be fine. However after an MRI to see what shrinkage had occurred, early last year, it was noted on my MRI that one of my liver cysts had grown very large (apple size) & was pressing on my IVC (Main artery supplying blood to bottom half of body) So I was referred to a local Liver Surgeon, who said immediately de-roof it. I told the reporting IR (friend) & he disagreed & asked me to seek a second opinion at a specialist hepto centre, I did & they disagreed with him, saying de-roofing a liver cyst pressing on the IVC is a very dangerous way of dealing with it & "if " if needed treatment that their advice would be to aspirate it through the stomach. I went for a special liver scan 6 months later with dye contrast (still on Esmya - as was being told it was ok) surgeon said simple liver cyst & it hadn't grown any bigger in the 6 months & he could discharge. I asked for a repeat scan, he agreed to one within 1 year. Now my fibroid still 13cm, I have just seen a keyhole surgeon happy to have a go to get it out keyhole until I told him about the liver cyst! To which he said it would be catastrophic if it was damaged during laprascopic surgery! He consented me for a keyhole hysterectomy but I'm more worried than ever about it & maybe I should be having open surgery & I would have preferred myomectomy but he like others said more risky again for me with the size & position of my fibroid! I'm so confused!

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    • Posted

      Hi Heather

      It's a minefield isn't it and you have to be so on the ball that you're being treated correctly.

      My fibroid is 10 cm but I have other not far behind. I've had my family (20 and 17) so I'm done with my troublesome uterus. A hysterectomy is the last resort I appreciate but I'd rather have that and know that they'll never return. I'm 46, my menopause could be a good ten years away.

      At the moment though my liver is causing me more concern although I feel ok. Have you had tests on your liver see how it is?

      Good luck with it all

      Sophie

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  • Posted

    I took my last eysma tablet 2 years ago. I've never had any problems to indicate liver issues. I had taken 2 x 3 monthly courses with a 2 month gap. End of 2015 - beginning 2016. Should I be concerned about my liver now or assume ok. I suppose not everyone will be affected hopefully ?

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  • Posted

    Hi Sophie,

    Yes they came back saying satisfactory, my GP advised a repeat though. I'm thinking maybe laprascopic isn't good with a liver cyst. Another complication to think about, whereas with open they are a bit further away from the liver!

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  • Posted

    My doctor gave me two variants for solving my problem. First variant is a surgery. The second one is

    hormonal therapy. I thought that hormones would be less harmful for my health. The doctor gave me the scheme of treatment and warned that Esmya was an expensive drug. 

    Ok, I bought tablets for the first month and waited  for my periods. Also my doctor recommended me to do some test for my liver. So I search in the Net about sides effects of Esmya. OMG! It was a real shock for me and now I don't know what to do.  Should I consult doctor again before starting the course? Should I start it and see my doctor after one month? (I still hope, that I wouldn't have side effects) Should I take them or better throw them away?  I am 29 and in the future I hope to have babies sad

    P.S. Sorry for my mistakes, English is not my first language. 

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