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5 months on Fibristal and no change

Posted , 19 users are following.

bee37138
bee37138

Hello ladies,

Am almost at the end of my second course (5 months to date) of fibristal treatment and my uterus' size remains the same. In fact, I even fear the fibroids might have grown during the treatment as I feel them more with certain movements. My belly also looks bigger - I think. 

While the side effects have been pretty mild (with the excerption of the occasional hot flash and nigh sweats), I feel like I have bloated since started this medication. I run 30km per week, strenght train 5x/wk and eat carbs once a day. Yet I cant seem to get ahead of the weight. Its very frustrating. 

I wouldn't have mined the weight if the fibroids were shrinking, but they obviously aren't. Have any of you ladies had luck with this drug? If so, how long did you have to take it to see results. I wasn't expectign quick fix, but I feel 5-6months is enough time for a medication to work, i.e. if it will at all. My gyno wants me to do another 3month course, but am hesitant. If there was no change for 5 months, what will 3 more months do?.....so frustrating!

0 likes, 26 replies

26 Replies

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  • lauren37721
    lauren37721 bee37138

    Edited

    Hello, I am obviously not a doctor but I was on it for 4 months and then had an MRI scan which showed they had only grown, I didn't really get any side effects while I was on it but the heavy bleeding continued throughout and I needed my second blood transfusion. I was a bit like you I could tell they had grown and my stomach was growing but I guess you won't know till you have a scan. If I were you though I'd be pushing for another option rather than another 3 months on it. I have ended up paying privately to see a doctor in Manchester called Andrew pickersgill and he has filled me with confidence. I will be having an open myomectomy soon. Not sure where you live but do your research and if you can find somebody reputable who also does private it's definitely worth doing and then going back on the NHS. It has worked for me 🙂

    • bee37138
      bee37138 lauren37721

      Posted

      Thanks for your response, Lauren,

      Am actually in Canada. I took the medication to help shrink the fibroids before ttc after a miscarriage which may/or may not have been caused by the fibroids. I think I'll just go ahead and try again and see what happens. I might be lucky this time. I'be been advised against surgery prioir to conception as it may cause scaring which could reduce fertility.

    • lauren37721
      lauren37721 bee37138

      Posted

      Keep us posted 🙂 Fingers crossed for you. Sorry to hear about your miscarriage, I am concerned about fertility too as I really want children but I've been told i am unlikely to conceive with the fibroids I have due to the size and location of them. They also told me if I conceived now I would be high risk and likely to miscarry. They steered me away from myomectomy for a long time and the surgeon who will do my operation said it's likely because it's complicated but he is very experienced. Hopefully all goes well and good luck to you whatever you decide x

  • barbara91702
    barbara91702 bee37138

    Posted

    Hi, I am also at the end of my second cycle, at my last appt with gyno he said my uterus seemed to be the same and because I had dreadful pain during the two month break he thought my only option was a hysterectomy (I am 51 so not trying to save my fertility), I have been given the next three months as am much better on them, but seems it is not a long term fix for me and as I want to get my life back! I just want these things out of me so have got my head round having a hysterectomy. I am grateful for Esmya as it gave me the break from the pesky fibroids and gave me the chance to make the difficult decision with a clear head. I have had mild symptoms from Esmya, tiredness, bloated tummy, few aches and pains , but all worth it, and yes it is possible I have put on three/four pounds!

    Good luck.

    Barb x

  • vicki66205
    vicki66205 bee37138

    Posted

    Hi there. I just read about your experience with fibristal. Did any changes happen at all for you ?. I've been taking it 3 months now. I'm in a lot of pain like cramps on one side. Oh it hurts. Doctor is talking about taking another 3 months. I'm starting to think just get a hysterectomy that should help the most.

  • monique98021
    monique98021 bee37138

    Posted

    Hi,

    I am from Canada, 46yo. and diagnosed with a large subserosal fibroid that does not affect my cycle, my problem is the size, causing frequent urination, pressure ect.. very uncomfortable. I just ended 3 months on fibristal and apart from stopping my period it had absolutely no effect on shrinking the fibroid, had an ultrasound that shows it actually grew. I am 135 pounds and look 5 months pregnant. My next option is embolization or hysterectomy. Has anyone had an embolization on a large fibroid advise? this thing is 128mm x 97mm x 124mm

    • Colleen70
      Colleen70 monique98021

      Posted

      HI

      I am also from Canada, and have multiple fibroids largest being 8.5 cm

      I am taking the fibristal as well. I have been on for 3 months off for 2 and now back on for 6 months it is starting to help with the constant pressure on my bladder but I have constant leg pain. Do you ever have lower back or leg pain?

      I'm going to request the embolization as I met a woman that had great results from it, she had a large fibroid.

      i hope you find some relief.

    • christine08033
      christine08033 monique98021

      Posted

      I'm also 46 and I was on Fibristal for a little over two months, I had between 25-30 hot flashes a day, headaches and the bleeding never actually stopped until a week before my hysterectomy. I'm not sure if they shrunk the fibroid but the first week I was on it, it felt like labour pains. I found it super painful, I had guessed it was the drug shrinking the fibroid.

      Its three days after my hysterectomy and I'm still having some hot flashes, I hope the drug wears off soon, they left my ovaries so I wouldn't go right into menopause

  • laura03805
    laura03805 bee37138

    Posted

    Hi ladies, I'm also in Canada with a 9 cm subserosal uterine fibroid. I was on Fibrastal for three months and it was great in terms of not having my period every three weeks. Good news is no negative symptoms, bad news is the fibroid is the same size. Not sure if I will bother doing another course of this medication. Lupron is the other option, but if you don't have a health plan, it's $1200. I'm considering the embolization. I've been told 9 cm is not too big to proceed with the surgery, and you don't have to be under a general anesthetic, you can stay awake and recovery is 1 week . Much less risky id this procedure is an option for you.

  • T774
    T774 bee37138

    Posted

    Has ANYONE actually have a fibroid size reduced from this treatment ?

    • kate55536
      kate55536 T774

      Posted

      Yes! I had 3 moderately sized (tennis ball) fibroids. I could feel them when I laid down and pushed on my abdomen. My uterus would enlarge before my period up to just below my navel. I had 2 courses of Esmya. I remember the cramping was very bad the first month or two. After the first course, my uterus was down to my mid abdomen, and I felt a huge reduction in size of fibroids. Periods were greatly reduced. Just finished my second course. Even lighter periods now. I felt great on Esmya. I wish I could just take it until menopause because I have horrible pms. I believe I am progesterone intolerant, horrible bloating. All that is back. At least my bleeding is better now and not as anemic.

  • Colleen70
    Colleen70 bee37138

    Posted

    my fibroid did not shrink at all. I had a hysterectomy as the fibroid was so large and they found I had endometriosis. My gyno said he feels the fibristal fed the endometriosis. I was so sick after being on it for 5 months.

  • courtnay15274
    courtnay15274 bee37138

    Posted

    Hi ladies,

    i have several large fibroids. i started on fibristol 3 months ago. just ended a couple of days ago. when i was on it my stomach was extremely large from bloating. as soon as i stopped taking the drug my stomach shrunk, but i have extreme stomach pain. im thinking it has something to do with the fact that the bloating went down so quickly. Anyone else experience this? im going back for testing next month to see if there is any change with the size.

  • saide94281
    saide94281 bee37138

    Edited

    hello everyone!

    I have started taking fabristal 15 days ago. I am not feeling well. I am feeling super tired, dizzy, i am having migraines . I am having hot flashes every night. Also I gained 4 pounds in 15 days. my belly is huge....

    has any one had suddenly weight gain?

    • kate55536
      kate55536 saide94281

      Posted

      You may want to check for hypothryroidism. There is a thyroid, progesterone connection. I actually lost weight on Esmya. I think because I didn't have the monthly water retention before my bleeding.

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