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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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  • christine65130
    christine65130 asa93843

    Posted

    Hi, I have the same problems as most of you, several large fibroids which have been causing pain, pressure and heavy bleeding. I am 59 but have never experienced menopause as the fibroids bleed continuously. 

    I have taken Esmya for 2 3 monthly periods, and each time they have reduced the fibroids and stopped the bleeding completely. The reduction was by about a 3rd. I suffer no real side effects on Esmya, other than menopausal ones such as flushes, but this is welcome. 

    I was hoping that by taking it, menopause would kick in and the fibroids would not grow again, but each time they grow back in about 3 months. Don't really know what to do now, was hoping to avoid a hysterectomy, which my gynecologist thinks is inevitable.

    • caz73369
      caz73369 christine65130

      Posted

      Hi Christine. So sorry to hear about your difficulties with fibroids. It must be so frustrating for you as well, knowing that menopause can't be far off! Has your gynaecologist suggested other options e.g. myomectomy, uterine artery embolisation or hysteroscopic resection? I'm about to start ESMYA to shrink my fibroid pre-surgery and the latter 2 are what I'm considering as I want to avoid a hysterectomy too. Myomectomy isn't an option for me apparently because of fibroid position. Hope this helps.
  • christine65130
    christine65130 asa93843

    Posted

    Hi Caz, no I have several large fibroids embedded in the uterine wall, my uterus at worst was the size of a 4 month pregnancy. I had an MRI which showed so much bleeding in the uterus that it was thought it could be endometrial cancer, but a biopsy ruled that out. A full hysterectomy was considered the only option. I live in Spain and have seen 2 Gynaes  privately, both of whom don't see any problem in 'removing something I don't need any more'. I am worried about the op though, as the size of the uterus means it will be a large midline incision and involve a prolonged recovery time. Seems unnecessary but if the fibroids don't stop growing I guess I will have to have it. I always thought they would stop growing at menopause......
    • fibroidy
      fibroidy christine65130

      Posted

      i am very simiar to you, large fibs embedded in uterus, 5 month in size. had 2 courses of Esmya and once off them seem to be back to same size as b4. i've had myomectomy, that did not work and was also told hysterectomy would be the only option. im in my 30s with no kids, so would be a major decison. was hoping to stick it out till menopause and hope they shrink then, how old r u Christine?
    • fibroidy
      fibroidy

      Posted

      just saw your post above, its so hard dealing with them isn;t it.
    • christine65130
      christine65130 fibroidy

      Posted

      Must be really tough at your age, menopause could be a long way away, When I was first diagnosed I was 50, and thought it would all be over in a couple of years, but was told after an ultrasound that my ovaries were still producing eggs, so I was not near menopause. And here I am 9 years later in the same situation. An added stress here in Spain is the language problem, and, because my condition existed before I took out medical insurance, I would have to pay the full cost of the operation.
    • fibroidy
      fibroidy christine65130

      Posted

      wow, thats a long time, i am 3 yrs in since diagnosis and not really any nearer to a resolution. Can only imagine how hard it is with the language barrier.
    • suicra
      suicra fibroidy

      Posted

      Hi fibroidy.. so to sum it up, you wont recommend esmya? Im 34 and hv 5cm i think subserosal fibroid. I dont know if myomectomy is best for me as i still want to get pregnant. With esmya got worried with all mentioned side effects like more gain weight, shrink a bit but re grow again. Just weird effects.. what can u advise?thanks
    • fibroidy
      fibroidy suicra

      Posted

      I did like Esmya as for me I did not have bad side effects. When I took it my periods stopped and I felt like the fibs shrunk, but not having a scan for a few months so just guessing from the feel of them that they have shrunk slightly. You can not get pregnaut while on Esmya. If you want to get preganut soon , you could take esmya to shrink the fibs , then try to conceive.
  • nik21657
    nik21657 asa93843

    Posted

    Hi I am coming to the end of my 3 month treatment. The rest from heavy periods was welcome as pads, tampons and flooding , changing products every hour was expensive and inconvenient. I have 14 days left of my 1st 3 month treatment and had a light bleed this morning -is that normal ? I want to know if it has shrunk and I am scared of the returning periods before next course. I have suffered hot flushes at night and fatigue, weight gain and dizziness. I hope it's worth it to shrink my 9 X 9 fibroid.
    • christine65130
      christine65130 nik21657

      Posted

      I think you can have small bleeds at any time, after 2 months on Esmya my bleeding stopped completely, but as I am past having normal periods maybe that just meant the fibroids were not growing. I'm now 20 days into my 3rd course, still getting a bit of discharge but nothing more. I didn't bleed after my first course for about 3 months, how long a break will you have between courses? 
    • nik21657
      nik21657 christine65130

      Posted

      Hi Christine I was told 2 months, so I'm thinking a period will appear at sometime when I stop. Then another 3 months on. When I went to the hospital for a blood transfusion( 5.6 ) I was prescribed them there by a consultant. I have heard nothing since. Hopefully I will be measured in the 2 months off them, but I feel I have fell off the radar. Do you feel tired on them? If you suffered any side effects on the first 3 months did the re occur the second time you started taking them?
    • christine65130
      christine65130 nik21657

      Posted

      Difficult to say, I think the heaviness with the large womb makes me feel tired anyway. Nothing I would complain about. I have hot flushes, mostly at night, but during the first course it was day and night. So I would say it's much the same each time. To be honest I was so happy when the bleeding stopped and the shrinking started, I didn't notice the side effects!
    • nik21657
      nik21657 christine65130

      Posted

      I agree the bleeding stopping is the best thing. I think it must have shrunk because I don't feel full all the time. I have put on a few pounds but that's to do with not exercising as much I think. The night hot flushes I don't mind, a bit of a shock at first. At least I'll be prepared for the second round.
  • karen57944
    karen57944 asa93843

    Posted

    Hi all after a year of severe heavy clotting bleeding and constant pain I finally went to see Gp. After multiple scans ect I was diagnosed with a huge 13cm x12cm fibroid and ovarian cyst.After several admissions to hospital I was given prostap injury, which has reduced the bleeding, but I am still in pain. I went to see the gynaecologist on Monday and have no option but to have TAH, I am in full agreement with this decision

    I am starting Esmya purely to shrink the fibroid ready for surgery.

    Reading all the comments I will be happy just for a break from the constant bleeding, surgery should be in 3_4 weeks time.

    • christine65130
      christine65130 karen57944

      Posted

      Hi Karen, hope the Esmya relieves your symptoms, although I do find it takes 3-4 weeks to take effect.
    • karen57944
      karen57944 christine65130

      Posted

      Now that concerns me as I was told by the consultant that if the fibroid hasn't shrunk enough I will have to have a mid line incision, maybe I should consider waiting a while longer for surgery.

      Thanks for the reply gives me food for thought

    • christine65130
      christine65130 karen57944

      Posted

      The first time I took it, I went back for an ultrasound 4 weeks into the course, and there was no discernible shrinking, although my womb felt softer and the bleeding had become more like a discharge. After the next 6 weeks the shrinking was obvious even to the touch, maybe 30% smaller. 
    • suicra
      suicra christine65130

      Posted

      Hello all. I will be starting on Esmya soon. Im just waiting for my prescription to arrive. I have read all your testimonies and thank you for that. At least it gave me an idea what minor or extremes effects this drug on me. I believe our reacts differently. Hoping mine goes well.. will keep you updated how it goes. Praying this drug will really shrink my fibroid until its gone. Thanks to all. Lets continue sharing our experiences here..
    • nik21657
      nik21657 suicra

      Posted

      I was reluctant. I never take tablets but, to be honest they stopped my periods which was a welcome relief. I stop next Wednesday for a 2 month break and hope to have my fibroid measured again then. I had hot flushes tiredness, sensitive gums and stomach aches. I had dizziness for the first couple of weeks but the side effects improved over the months. Good luck with your experience.
    • christine65130
      christine65130 nik21657

      Posted

      Oh I'd forgotten about the dizziness. I had that too but like you only for the first couple of weeks, more feeling lightheaded than really dizzy. I don't like taking drugs long term either, but as Esmya acts only to modulate the progesterone receptor, I feel it's unlikely to have any other detrimental effects. The side effects are due to the imbalance of hormones, and definitely diminish in the 2nd and 3rd course.
    • suicra
      suicra nik21657

      Posted

      Me too nik. Because i have mild gastritis so scared of taking more tabs. Update ye all a few weeks.. will be starting tomorrw.. thank you
    • maria34738
      maria34738 karen57944

      Posted

      Hi Karen

      I have just read your post, sounds like we are in the same boat! I have been diagnosed with a 12 cm complex ovarian cyst and have numerous fibroids as big as 7cm. I've had a severe pain in August, but took until Xmas for a clearer idea of what's going on. I have had MRI and CT scans which were clear but really scary ! 

      I have taken Esmya for just under a month and waiting to see if bleeding has stopped, I've sensed a dip in my libido which is a bit of a mare as in a new relationship.

      i have decided on full abdominal hysterectomy with ovaries also removed, i have just been given 10th May , so will be on Esmya right up to surgery which hopefully shoukd mean the fibrids will be reduced enough for them to use by old caesarian scar rather than a vertical incision.

      Have you got a date yet? And did the bleeding stop for you? How old are you ? I.'m 53 

      hope all goes well for you

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