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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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  • kizzy21
    kizzy21 asa93843

    Posted

    Hiya

    My understanding of Esmya is that it's a pre opp drug to shrink fibroids that are to big to opperate on. But are used to shrink smaller fibroids by gyno has a first resort to help relieve painful symptoms. 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. After many year's of suffering with fibroids and given Esmya to try it didn,t agree with me. So decided on a hysterectomy which after 6mths post opp I feel so much better. I had a total hysterectomy has I had multiple fibroids and polyps on my ovaries. I hope you go on ok with your decision to take Esmya or to try another solution. ☺

  • Pumpkin1975
    Pumpkin1975 asa93843

    Posted

    I was given esmya to shrink fibroids as I didn't want a hysterectomy, although I have completed my family. I was on it for 3 months, didn't have any side effects and the fibroids shrank by about a quarter. My main symptoms were pain rather than bleeding and I didn't notice any difference after the esmya. I then opted for an embolisation, which was not a pleasant experience and I wish I had just gone for a hysterectomy and had done with it! From what I understand the esmya is just a temporary solution and the fibroids will likely grow back when you stop taking it. Good luck x
    • patricia27802
      patricia27802 Pumpkin1975

      Posted

      Hi Pumpkin really sorry to hear that your UFE failed. I had one 7 months ago and it's improved my periods drastically. My Radiologist said that UFE kills the Fibroid and it can't grow back. However new ones can form while you still have your Uterus. I suppose that it all depends on how bad the symptoms get. There is also Myomectomy which I'm opting for Hysterectomy should be a last resort I think. Glad you are doing well best of luck to you.

    • aine12831
      aine12831 Pumpkin1975

      Posted

      UFE failed for me too. I have two fibroids one of which is 15cm. I have just been put on Esmya to shrink the fibroids. I'm heartened that yours shrunk by 1/4. The next step for me is probably a hysterectomy. I'm 40.

  • SHED35
    SHED35 asa93843

    Posted

    Hi

    I was prescribed Esyma last September due very heavy periods and took it for 3 months and had 2 month off as you cannot take it consectively after this.

    I had a ultrascan in November and the fibroid had shrink. I only had one period in the 'break' and it was not as heavy as I used to be.  My consultant was happy with how it was going but did not think the fibroid has shrunk sufficiently stop heavy bleeding. So I was prescribed another 3 months which will take me to February.  My consultant is going for a non-invasive approach and there has been no talk of operations thank god!!

    When I first started taken Esyma, it left  me tired and with headaches at the beginning.  This got better, as the headaches becasme sporadic and I got use to tiredness. Someday I just felt it more than other days.

    When you come off the Esyma for 2 months, I did have a surge in energy and obviously the tiredness came back when I went back on Esyma.

    I hope this helps.

     

    • barbara91702
      barbara91702 SHED35

      Posted

      I have been told that Esmya has now been approved for long term use, hopefully meaning for some people surgery can be avoided! I have just started using Esmya and have found that I have finally stopped bleeding (thank goodness) and am in no pain....if I can avoid surgery by realigning this drug I certainly will consider it! I will welcome your experience as I am still in the very early stages of trying this. I wish you all well and hope whatever route you take you finally end up pain free!
  • fibroidy
    fibroidy asa93843

    Posted

    Hi , I have taken 2 courses of Esmya, a year apart. first time was as pre op to shrink them before a myomectomy and seconds time just to give me a break from bleeding. in answer to your questions

    1. after the 3 months , my period returned to being heavy. While on it my periiods stopped and then came back one month after i had my last pill

    2.it shrink mineby about a third, thnk they were 11cm and they went down to 8cm

    3. I had no bad effects from it

    4.as far as i know you can only take it for 3 months with a break between courses

    5. for me personally i feel like the fibroid grew back to the size i started with once  off the esmya.

    6. i would recommend as it gave me a break from bleeding so i could have a normal life for 3 months.but i do not feel its a permenant fix

  • lesley1605
    lesley1605 asa93843

    Posted

    Hi I have one fibroid about 12x13x11. I have incredibly heavy periods to the extent am wearing 3 long pads and the most absorbent tampon I can find. At the heaviest a changing every hour. Have experienced flooding and literally can't leave the house for a few days. They last about 9 days.

    I first took esmya over a year ago for 3 months. The fibroid shrunk slightly, but the bleeding stopped. 6 weeks after stopping periods came back as heavy as ever. I was prescribed it again after 3 months and period stopped for duration. Normally you are only allowed to have 2 lots of treatment, but I have just finished my 3rd round. My fibroid has actually increased marginally in size during treatment, but I will find out next week just how much. I suffered no significant side effects had hot flushes but this may be just my age 46. I would recommend the treatment, but it isn't a long term cure. Hope this helps

  • caz73369
    caz73369 asa93843

    Posted

    Hi.  I'm in a very similar position to you and thought I would share my experience.  I am following this discussion with a lot of interest.  I have a 7cm submucosal/subserosal fibroid which causes me very heavy bleeding, so much so that just before xmas I had 2 emergency admissions to A&E over a week with haemorrhaging, total blood loss of about 30%. Fairly traumatic!  Now on norethisterone and tranexamic acid and consultant wants to start me on ESMYA in 2 mths time - slow wean off the norethisterone to prevent another haemorrhage and coil has been inserted to help with that. He was involved with the original trials of ESMYA and has had good outcomes but I too also hear from other women who it hasn't worked on and that worries me!  He's expecting a 20% shrinkage after 3 mths and then another 3 mth dose before surgery, likely hysteroscopic resection +/- endometrial ablation. He did say there was a chance I could stay on the ESMYA but I really don't like the sound of that.  I'm 47yrs old, fit and healthy (or at least I was!!) and have 2 young children.  I don't plan on having more children but i really don't want to have a hysterectomy - not only because it's major surgery with associated risks but there are possible long term effects of hysterectomy and there is some thinking that it actually produces hormones (not only the ovaries) which are beneficial into later life.  I feel like I don't have a lot of options at the moment as i'm terrified of haemorrhaging again and feel dependent on hormones to control that.  if the ESMYA doesn't work for me, I think I may have to reconsider hysterectomy. A myomectomy is out of the question apparently because of the position of the fibroid and the high risk of severe blood loss during the surgery - it would likely turn into an emergency hysterectomy!!  I can keep you posted with how I get on with the ESMYA.  Are you due to start it soon?  Or are you just looking at options at the moment.

    Wishing you all the best and a fibroid free future.

    thank you!  

    • asa93843
      asa93843 caz73369

      Posted

      Hi Caz! Wow, your thoughts sounds just like mine!! I can manage and go on for a little more time like this but I know I need treatment soon. I would wish for the fibroid to magically disappear without having any hormones or surgery but I know I need to take Esmya soon.

      The past months I've begun to feel a fullness and pressure and it really bothers me. It's like a constant reminder that it's something there.

      I too are fit and healthy, doing yoga and eating organic.

      I'm just wondering why one should be on Esmya, risking having side effects and then once off them the fibroid will stop growing again? I just don't see the point to take them if the results are not lasting.

      I share your thoughts on hysterectomy. I don't want to end up there. It's so frustrating not having more option, don't you think?

      Let's stay in touch ok?

      All the best to you!

    • patricia27802
      patricia27802 caz73369

      Posted

      Hi Caz I was interested to read your post. I would choose a different Gynocolgist as 7cm a Myomectomy can be done. I think they are refusing due to your age as they only want to do them on women who want a child or more children. So I would ask the Gynoclogist if Esyma is used to shrink the Fibroid prior to surgery and it works then surely the Fibroid would then be the right size for Myomectomy.

      Also I would not bother with Endo Abaltion as I had that and my periods went from heavy to flooding after initially working for 3 months. This meant that I gained 2 stone as well. Also with my stomach getting bigger I now have an tummy hernia. Up to you if you want to risk it. I would even say that the procedure increased the Fibroid size.

      I am going to see my GP next week to get Esyma and when I see Gynoclogy I am requesting a Myomectomy keyhole. As my Fibroid is now smaller I wil then be 50. Anyway good luck with whatever you decide to do.

    • vicky18214
      vicky18214 caz73369

      Posted

      Just wanted to know how you got on with Esmya and did you have hysterectomy?

      Have been on Esmys with 2 cycles but my fibroid has enlarged but the nlood loss has lead me to have transfussion totally scared

    • annette21382
      annette21382 vicky18214

      Posted

      Hi Vicky

      I too was very scared, but under circumstances this is normal, especially to loose blood that requires a transfusion but the main thing is that you are ok.

      In regards to Esyma I am still on my first month and first course so far so good as no side effects at all but still early days. My consultant wont check the size until after my second course so I will report back then.

      My advice to you would be to ask if the blood loss was as a direct result of taking Esyma. It may be Esyma just didnt work for you and if this is the case then your fibroids would have continued to grow.

      See what other options are available. This will depend on how many you have, their location and size. Dont be pressured into anything you dont want. I was originally advised a Full abdominal hysterectomy was my only option and only when i persisted I was then advised about Esyma. Sadly a consultant advised me some hospitals will make decisions purely based on cost and not you, so dont do anything your not totally comfortable with and ask for a second opinion if unsure.

      Good luck and let me know how you get on XX

    • kamal18403
      kamal18403 vicky18214

      Posted

      You can ask for an iron infusion, it is safe (as long as you are not allergic) instead of going for something as dramatic as blood transfusion.

      Hope this helps.

      Thanks

    • vicky18214
      vicky18214 kamal18403

      Posted

      I was not advised of this. I have lost so much blood even after the transfussion. I had a look online and they say if you change your diet and ways of eating you can shrink your fibroids naturally, without having a hysterectomy? Hope anyone who has tried this method to please reply. As im so weak i dread surgery as it will make me even worse but at the same time doctors are insisting on operation full hysterectomy.
    • rosemary97383
      rosemary97383 caz73369

      Posted

      Hi i have just removed my coil which was not fitted properly in the last 3yrs.

      The fibriods is about 8cm cerazette pill did not work for me been in and out of hospital.

      I am now on trannexamic acid and norethisterone.

      But as it my first time of hearing about esmya i would speak to my gp about it.

      Xx

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