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Esmya Tablets Fibroid Treatment

Posted , 151 users are following.

melanie3
melanie3

Hello I'm 44 and have recently been diagnosed with a 11cm Fibroid, my Gyno has put me on Esmya to try and shrink the fibroid, I just wondered if any one could me advice or their review as its fairly new treatment and can't find anyone who has tried it.

Thank you

9 likes, 605 replies

605 Replies

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  • chez43
    chez43

    Posted

    Hi Ladies,

    I was diagnosed with a 8cm Fibroid recently and prescribed Esmya. I've been taking it for 4 days now and have been having some horrible side effects which include; heart palpitations, chest pain, difficulty breathing, and water retention in my legs, nausea and today vomiting. Needless to say I have stopped taking the medication, I've contacted my consultant and am awaiting his advise.

    Have any of you ladies experienced these side effects? Maybe Esmya isn't for me...?

    • leila48285
      leila48285 chez43

      Posted

      Hi there,i'm sorry that Esmya didn't work for you,it didn't work for me either,i went back and forth A&E and Gp  many times with similar and worse symptoms,since May Im house bound with severe lower back pain,waves of burning pain all over and treated for FIBROMYALAGIA possibly triggered by the hormonal fluctuaction.The consultant at the Royal London Hospital did nothing to help,they denied the adverse reaction.I'm planing to make a complain and take it from there.I had a succsesful myomectomy in 2011,unfortunately the fibroid grow back and not only while on ESMYA an ovarian cyst appear which i have never had suffer with before. I hope things work out for you the way you wish!!!!

       

  • mandy79780
    mandy79780

    Posted

    Hi chez43

    I am on day 11 taking esmya I had an awful start on them bleeding heavily and I am back on iron tablets.

    I have had a few palpatations I have had them on and off for years though so I can't say they are just esmya related.

    I have felt nauseous since I've been taking them but I haven't been sick at all.

    I hope someone else can help you with your other symptoms it sounds like you need to ask the doctor and see if you need another form of medication. They have told me others are available if this doesn't suit me.

    Mandy x

  • chez43
    chez43

    Posted

    Hi Mandy,

    Thank you for your reply.

    My symptoms became progressively worse and unfortunately I ended up in A&E yesterday.

    They think I have had an adverse reaction to Esmya and needless to say I have stopped taking it.

    I'm waiting until I feel a bit better and then my consultant is going to look into other drugs that will shrink it.

    I really hope Esmya works for you as it has for lots of others. It's just not right for me unfortunately.

    It's pretty rotten being a woman sometimes! I'm definitely putting in a request to come back as a man next time round! ;o)

    Good luck!

    Chez x

  • mandy79780
    mandy79780

    Posted

    Hi Chez

    That isn't good ending up I'm A&E I'm sure they will come up with the right thing for you.

    My bleeding is very light now but it doesn't seem to want to stop completely. I haven't felt sick lately just tired and aching. Can't wait to get this energy back everyone keeps telling me I will get.

    I've unknowingly had problems from fibroids for about 12 years it's only the last 2 when they've done ultrasounds that they said I had fibroids. I was hoping to get through without an op but I need sorting out. Are they just trying to deal with your fibroids for now or are they shrinking it so you can have them removed?

    Not sure I would want to come back as a man either! Ha!

    Mandy x

  • Fraggle2013
    Fraggle2013 melanie3

    Posted

    Hey everyone,

    I am in my late 30's and was diagnosed with a 9cm Fribroid which was preventing pegnancy. So I was put on Esmya and have just finished the first 3 month course and after a scan found that my fribroid has shrunk to 6cm so big success. My dr said that Esmya has been licences for a second term so I am starting a new course again before a decision is made on whether I need surgery. My question is I have not started my second phase as I am waiting for my period to start, but it has not. It has now been 6 weeks since coming off and still no period - have any of you experienced this?

  • auroraborrealis
    auroraborrealis melanie3

    Posted

    Hi everyone!

    I found this forum when I searched for information about fibroids and treatment options. There is very little information about both fibroids and Esmya on norwegian sites so I was happy to find this forum. I'm a 36 year old woman from Norway. his is my story: In 2011 I had a CAT-scan when a specialist at the hospital thought she could feel a lump under my right rib. When the results came back they couldn't see any lump under my rib, but they found a 9 cm intramural fibroid on the back of my uterus. I had never heard about fibroids before and started to read about treatment options. I got an appointment with a gynachologist and she gave me two options; hysterectomy or just wait and see. At that time my fibroid hadn't given me any problems so I decided to just wait and see. Hysterectomy was not an option for me.

    The fibroid didn't seem to grow over the next 6 months, but more than a year later I had a new appointment with a gyno (a new person this time) and she found out that the fibroid now had grown. I got a MR scan and it showed that my fibroid now was 16x10x10 cm. The gyno still recommended hysterctomy but also mentioned myomectomy. I told her that I wanted to try UAE. She wasn't very enthusiastic about that option but agreed that it was my body and my choice. In april 2013 I got my UAE.

    The result of my UAE was not too bad. A year after my fibroid has stopped growing and is now about 14x9x10 cm. I know it's not a very good result but I'm just happy it has stopped growing. I still need to do something so now my gyno has put me om Esmya. I have a lot of aching in muscles and joints, feel a little extra tired and have a little more discharge than normal. I hope this will work, but if it doesn't, my next step will be myomectomy.

    I wish you all good luck in getting rid of your fibroids!

    • arkana
      arkana auroraborrealis

      Posted

      Hi Aurorborrealis - have you considered Acessa treatment? It is a relatively new treatment, approved in the US bythe FDA in nov 2012 already but not yet available in Europe (except one center in Germany where it is used as part of research). It involves laparoscopic heating/burning of the fibroid. You can google it (acessa fibroid) and find lots of information. I have a fibroid about the same size, have first tried HIFU (MR guided, nonivasive ablation - did nothing), then UAE (seemed to work but started growing after 5 months), Esmya (i had two rounds of 3 months each; shrinkage about 10%, but then starts to regrow as expected), and last Febr i had Acessa in the US. Although this involves anesthesia, there is no 'cutting' and i was out of hospital the same day, and walking around the day after. Shrinkage (absorption of dead cells) is expected to start 3-4 months after treatment, but i already feel so much better as the fibroid is much softer now than before. In my country the gyn had no other option than hysterectomy (with the risk of injuring my bladder and long recovery) so i was so happy i stumbled upon acessa as it is my last chance to avoid hysterectomy. The only downside was that my insurance did not want to cover, so that is something you need to find out if acessa is an option for you too. If you want more info, let me know.
    • Cookiesson
      Cookiesson arkana

      Posted

      Hej Arkana!

      Reading about your experience with Acessa and also reading up on it afterwards, really got my hopes up there!

      For a little while…

      But… It doesn’t seem like this has an FDA approval if you want to maintain your fertility.

      Or I HAVE to maintain my fertility… since I haven’t had children yet. And I really want to… but my fibroids are keeping me from having any… I need to get rid of them!!

      But… since I have my biggest one in the back of my uterus, in mural too…

      But… does anyone know if the Acessa method only lacks an FDA approval because its relatively new, or because it actually hurts/damages/destroys the fertility?

    • auroraborrealis
      auroraborrealis arkana

      Posted

      Thanks for the info, arkana! I have never heard about Acessa before but it sounds promising. If Esmya doesn't work for me I definitely will check it out. Since the Acessa treatment isn't available in Europe yet, no hospitals in Norway offers that treatment either. Hopefully they will soon. The good thing about healthcare here is that we don't need health insurance. All citizens are eligible for treatment free of charge in the public hospital system.

      I didn't know that regrowth is expected after you stop taking Esmya. The studies on Esmya I've read about on the internet claims that reduction in fibroid size in most cases lasts at least 6 months after women stop taking the pill. I will continue taking Esmya and schedule a Ultrasound scan to see if it has had any effect on the fibroid. I'm not very optimistic since my fibroid is a large intramural monster, but I try to stay positive and hope for the best.

    • arkana
      arkana Cookiesson

      Posted

      Hi Cookiesson, it does have FDA approval (google 'Acessa FDA' provides the info) but you are right it does not guarantee fertility or no side-effects for having children. There have been reports of women becoming pregnant after acessa i believe, so if you want to know it is probably best to contact Halt Medical (they produce the Acessa system) or contact a dr who has experience with it. Ofcourse if you want to be sure, you'll need to await clinical trials. I hope you will be able to shrink them one way or another and have kids!

       

    • arkana
      arkana auroraborrealis

      Posted

      Hi Auroraborrealis - that's so great re the Norway helth care system!

      I think the Esmya studies do indeed show the effect is long lasting. My gyn says it lasts longer than the luprin injections but he expects regrowth. Not sure whether that is based on hard evidence though.  In my case there seemed to be regrowth after about three months (i was unsure as i did not have an MRI and my fibroid grows and shrinks with the menstrual cycle, strangely - does anyone else have that?). I think the long-term esmya study was just published, showing it is safe to use multiple times (i.e. more than one round of 3 months) which is good as it will stop the growth at least temprary and maybe longer. I felt great on Esmya (better than without it, had no side effects at all), but it did not do enough for me, my fibroid is ±10x12x17 cm. 

    • Helen1302
      Helen1302 arkana

      Posted

      Hi Arkana,

      Could you let me know the name of the clinic and doctor your saw as I am in the similar predicament and would like to try this treatment to avoid a hysterectomy. 

      Thanks

      Hema

    • arkana
      arkana Helen1302

      Posted

      Hi Hema1302 - i have just sent you a pm with this information

       

    • Needle
      Needle arkana

      Posted

      Hi arkana,

      It sounds like you and I have gone through very similar treatments, except the UAE bit. I'm very interested in the Accessa. Could you PM me and tell me where you got this done and the cost?

      Thanks in advance

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