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Esmya Treatment complete - No change

Posted , 5 users are following.

jess48383
jess48383

Well I was hoping I could come on here and share good news about my experience with Esmya. 

Unfortunately I've just done my ultrasound after completing treatment and there's been no change. 

I have one massive one; 11cm x 11cm x 9cm (depending on which scan you refer to since the measurements were slightly different in 2 different ones over 2 month period). 

My measurements today at 10 cm x 12 cm x 7cm. 

I could be hopeful (and delusional) and say there's been a 2cm decrease in one measurement but the woman doing the scan said that it's basically the same and that measurements will always differ.

Initally my gyno and I were in agreement that if the meds didn't work I'd have to have an abdominal myomectomy. I'm only 30yo so we were obviously both hoping I wouldn't have to. 

Problem is, is because my life is cursed I just found out I have a herniated disc in my neck and will probably need surgery for that first. Which is a major surgery, probbaly a disc replacement. My neurosurgeon said that an anesthesiologist probably wouldn't agree to put my under for the myomectomy in my current condition. I was really hoping that I'd see some decrease in size today so at least there was progress and Id just go on another course of treatment with Esmya while I sorted out my neck. 

But no. No such luck. What do I do now? 

Has anyone had no success the first time but persevered with a second try with success? 

 

0 likes, 10 replies

10 Replies

  • patricia27802
    patricia27802 jess48383

    Posted

    Hi jess

    So sorry you didn't get the shrinkage. I have just finished my 1st course of Esyma and I'm post op UFE cos I'm 50 and they Gynocolgy said I have to agree to a Hysterectomy in advance if I want a Myomectomy. Did you have to agree to a Hysterectomy in advance? Anyway back to your question I have read of one lady getting shrinkage after 3 Esyma treatments so it's hard to know. Maybe ask the Hospital what the chances are. Good luck x

    • jess48383
      jess48383 patricia27802

      Posted

      HI Patricia, thanks for your reply. I won't be doing a hysterectomy, but rather, an open myomectomy to remove the fibroid. It's not something I'm locked to, it just seemed to be the best move if Emsya didn't work since it was growing rapidly. 

      Good to hear that there's at least a slight change multiple treatments may work (however small). Did your treatment work? It's a shame that hysterectomy's seemed to be pushed so heavily in certain countries.

  • rebecca45800
    rebecca45800 jess48383

    Posted

    Hello!

    I've had the exact same experience with esmya as you have had.

    I went on esmya last year with the hope that it would shrink my fibroid (which is the size of a grapefruit). I stayed on it for 6 months and then had an ultrasound.

    Esmya was brilliant in the fact that it stopped the horrendous periods and some of the pain went but I was so disappointed to find that it hadn't shrunk at all.

    I saw the Dr afterwards who also said the same about a possible slight change in measurement but they thought that was just the way they took the scan.

    Being 35 yo, they gave me a few options but agreed that an abdominal myomectomy would probably be the best. (Having it next Friday).

    I am so sorry to hear of the trouble you are in with your neck. Have they given you any idea when they can operate on that? I am on my 3rd round of esmya and although I have had a random period this time, it is still much better being on esmya than not until they can do a myomectomy.

    I asked the Dr if staying in esmya for longer would help to shrink it but she implied it wouldn't. I think they have to be careful with keeping people on esmya for a long time because it's a new drug, they are not sure of the long term effects.

    It's definitely worth talking through the options you have with esmya while you get your neck sorted.

    Sorry for my long ramble but hope it's helped a little. This forum is great for knowing you are not alone.

    All the best and look after yourself!

    • jess48383
      jess48383 rebecca45800

      Posted

      Definitely don't apologise for the ramble, I appreciate it. I think the research on Esmya is super limited and I think that the bigger the fibroid is, the less likely it is to work. Which is sucky for people like us. 

      It did stop my periods which was a godsend. Need to make sure I get some tranexamic acid quick smart haha.

      I was really surprised it hadn't shrunk at all; at times my stomach felt so much smaller. Yes at times the bump was still huge but it seemed to be less often. I also used to have times when I'd cramp so bad because (I assume) of the pressure of my uterus/fibroid against other organs. Even my lower back pain reduced. So all of things togeher I thought that for sure it had at least shrunk by a few cms. Did you have a similar experience in terms of relief/smaller bump? Seems strange. 

      I see my gyno tomorrow and I'm certain he'll recommend I go on Esmya again. Seems the smart thing/only thing to do in the circumstances. I guess I'm just trying to come to acceptance with it all. The idea of taking ineffective medication is hard to swallow. Although I guess it is good for both of us in that in will keep it from growing and at least your doctor was honest with you so you didn't get your hopes up.

      Good luck with the surgery. It's such daunting experience waiting for surgery. I hope it all goes well! Make sure you come on here and ramble/vent if you need to during your recovery! 

    • rebecca45800
      rebecca45800 jess48383

      Posted

      Thank you so much for your lovely reply.

      I am really nervous about having this operation but it has helped so much finding this forum and for everyone being so supportive and knowing you are not alone.

      I have exactly the same experience in terms of some mornings it doesn't even show a bump really and yet other times it has been so large. Also I used to feel a horrible tightness all down one side and pains in the top of my thigh but since being on esmya, that seems to have decreased.

      I'm not sure why it appears smaller or larger some days. I wonder if it moves around a bit? I was also the same as you as I thought because the bump has got smaller, the fibroid must have shrunk so I was hugely disappointed when they said it hadn't.

      I really hope your appointment goes well tomorrow. Keep in touch with what they say and I will certainly come on here to chat after.

      Take care and look after yourself!

  • Needle
    Needle jess48383

    Posted

    Sorry to hear no change.  My experience was the same as rebecca45800.  Same size fibroid as yours stopped the bleeding but virtually no change to size, i think just a softening.  I ended up having a myomectomy, for me was the best decision ever! You must find a very skilled surgeon though because at that size, there are plenty of risks.  My only regret is that i should have done it waaaay sooner!  There is also UFE, which i investigated but never tried.  I wish i would have known that a fibroid never stops growing, basiclly until menopause otherwise i would have had surgery years earlier. 
    • jess48383
      jess48383 Needle

      Posted

      Hi Cam, thanks for your response. Sorry to hear Esmya didn't work for you but happy that you finally had the surgery and are happy with your decision. I think the thing I'm scared most about with the surgery is how massive it is. I've had several other surgeries, but they were minimally invassive. A huge bikini cut is terrifying! Plus the long recovery road... all of course when I can actually have a surgery after sorting out my neck.  But like you, seems like every woman has been super happy with the result and the decision to go ahead. That definitely gives me comfort. I probably don't even realise how different I'll be without it! 

  • christine65130
    christine65130 jess48383

    Posted

    Hi, would they allow you to start another course of Esmya at the same time as having surgery on your neck? It may help at least in preventing further growth of the fibroid until you are ready to have further surgery. Wish you the best of luck with both x
    • jess48383
      jess48383 christine65130

      Posted

      Thanks Christine smile I think the gyno will suggest I stay on Esmya while I sort out my neck since it is likely to have stopped it growing more in the meantine. At a $1000 every 3 months, it's a very expensive medication to take expecting it not to be effective! But still better than nothing I guess!

    • christine65130
      christine65130 jess48383

      Posted

      Yes I know, I have to pay for mine here in Spain. Bit it has been worth it. I'm now waiting to see if my fibroids grow back once more. I think hysterectomy may be the only option for me in the end.

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