Being on Esmya, Side Effects and Coming Off

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Hi all, I am 37 and live in the UK, Ive just finished my 3 month course of Esmya for the 5 Fibroids I have.

Now I can tell you about all the side effects of which I suffered from the weight gain to the hot flushes, but its really the stage of finishing the course and wjhat happens next I would like advice if anyone has any??

It has now been 1 week and 5 days since i took my last tablet, and the first week I was ok but after that I have had very dull aches in the tops of my thighs and stabbing pains in my lower stomach, as you women will know when it gets to that time of the month majority of people have that stabbing pain which feels like it is going straight up the middle of your stomach, well this is just like it but more severe as to the point I double over, I was seen last night by the out of hours GP and he gave me some pain killers to manage the symptoms but thats all he could do, he had never heard of Esmya so couldnt advise me, just told me to contact my own GP who then would be able to get in touch with my consultant up at the hospital.

I just wondered has anyone else had this problem and was told it was a normal process as no-one has told me what happens after taking Esmya, only that my periods should start again within 4 weeks of stopping the medication?

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  • Posted

    Esmya can now be given for several courses, so if you have not had the expected shrinkage you can have a further course. The period after the course of Esmya was a heavy one in my case.
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  • Posted

    Hi Kirsty

    My experience was a little different to yours but I had one very large fibroid last year which I was prescribed 2 courses of Esmya for before surgery.

    I found I had worse cramping, pain and leg aches before the Esmya started as I was having such dreadful heavy, almost constant periods. The Esmya was a life saver in stopping my bleeding so my anaemia was lessened.

    I had my fibroid removed in July but had regrowth by September (a bunch of small ones now). I asked for Esmya again but was refused. I was offered Zolodex (I refused). I am currently waiting for a hysterectomy next month. Anything to get rid of the fibroids!

    Periods/women's health are not taken seriously enough in my opinion. My fitness and mental health has suffered alongside the womb issues.

    Good luck with your treatment.

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    • Posted

      Hi Jaspy,

      I too have always suffered with my periods ever since i started them i think, its was like a red hot poker being poked up and twisted, doubled me over so when the treatment of Esmya started and they stopped, it was such a relief, it was like a new lease of life for me, but a week and a couple of days since stopping them, my gosh i got the pain back, going to try again in April and ask the consultant to give me a hysterectomy, it spoils my life when im due, i even know when im ovalating, its like i can feel it expecially if its the right side.

      Im with you on the mental side of things cause i blame them not sorting my fibroids out earlier as to why ive never had my own children, dont get me wrong my step children are great and im becoming a nanny in May but still would of liked my own.

      I hope everything runs smoothly with your hysterectomy next month and wish you a speedy recovery x

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  • Posted

    Hello Kirsty, I have had had 2 courses of Esmya and didn't have any problems at all when stopping the tablets. There was just the gradual lessening of hot flushes. Being 59, I am well past 'normal' periods, but I began bleeding again from the fibroids about 3 months after the first course and very lightly 2 months after the second. After the second course it seems the fibroids have not shrunk as much as from the first. Hope you are finding some relief from your pain.
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    • Posted

      Hi Christine,

      Thank you for replying, at least with everyones comments it gives me a little insight into what can happen, i just wish my doctors would listen to me and let me have the hystorectomy.

      I have been given Tramadol and Naproxen to help with the pain and if it gets worse go back but thats all they can do until I see the consultant in April.

      Hope you get sorted out too hun xx

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  • Posted

    Going back to your pain. If bad enough that you were doubled over and still that bad you should contact your gynaecologist. Most hospitals now have an Emergency Gynae Unit and your GP could refer you there, if you cannot get to see your gynaecologist quickly. If all else fails, go to A and E.
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    • Posted

      hi hun, ive just come back from my GP, he has said to continue taking the tramadol and naproxen but if my symptoms get any worse then to go back, I see my gynae consultant in april as she changed it from feb for some reason, i just hope the pain relief work as myself can tolerate quite a bit of pain but this is intermitant sharp stabbing pain, so will see how i go, x
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  • Posted

    Hi Kirsty 

    Thank for saying about the weight gain while on Esmya.  My GP did agree with weight gain being a side effect as well as menopause making you gain weight. I have had dull aches in the top of my legs for a while now ( i was on Zoladex for 3 months before taking Esmya)  I have also had a lot of pain in the stomach on both sides of my tum.  Last week i started to 'spot' but apparently that is normal as hormones are all over the place ( but i have been on medication to stop all periods since October of last year).

    I had a op last December to remove my fibroids and to thin the lining of my womb but when the surgeon went in, there as a large fibroid blocking the way so they could not do anything. So back to see the consultant feb 25th so fingers crossed i will have a hystorectomy (i am 47 and had 3 kids) - the consultant says i am a prime candidate to have one.

    My GP told me the Esmrya tablet is a Gynae tablet that GPs dont prescribe out.

    I hope things all calm down for you and the pain stops and your periods light!

    x

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    • Posted

      ive put on a stone whilst taking Esmya couldnt believe it and the flushes well what can i say i was on fire most nights, I have had loads of gynae trouble over the years with blocked tubes, adhesions, infections, ive even been through IVF but still not been able to have children, they diagnosed my fibroids about 10 years ago and did nothing about them then once i started having pain again they did more investigation and found i had grown another one hence why they commenced me on Esmya, I have asked for a Hystorectomy but they wont give me one, think i have asked every year for the past 4 years as i do suffer every month, but even at nearly 38 and becoming a nanny from my step daughter they still wont do it,

      Fingers crossed the pain will ease soon and they will come around to the hystorectomy.

      Fingers crossed for you too hun, hope all goes well with you xx

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    • Posted

      Yes I have experienced the weight gain too but then a 4 month pregnancy stomach is hardly flattering! I found that Esmya seems removes the swollen tender feeling in my stomach ( I couldn't wear tight jeans), and breast tenderness, but instead I'm awake most of the night with the flushes.
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  • Posted

    I am amazed that few women know about and take the effort to investigate the outpatient procedure called UFE (Uterine Fibroid Embolization. It can go by a few related names too). This procedure IS NOT done by your OBGYN, and since they do not do it, they do not make money recommending it, so they often either do not tell you about it because it is not in their financial interests, or if it comes up they often downplay it.

    I have seen a few reports written by advanced female OBGYN's on the very good reasons to seriously consider this minimally invasive approach versus the other procedures which are much harsher on your body.

    The kind of medical professional you want to talk to for UFE is an IR, for Interventional Radiologist. This profession is the Navy Seal team in hospitals who get brought in when things go bad for patients. IR's do all kinds of wonderful minimally invasive procedures, including UFE, PAE (Prostate Artery Embolization), clot busting to stop aneurysms from happening, fistula elimination (often caused by chemo in cancer patients or patients with severely weakened immune systems), and men and women with severe back pain brought on by scoliosis and cracks in their spine.

    If you want to talk to an IR, I suggest you ask any good sized hospital who they recommend. You will find IR's in nearly al major hospitals. Many top IR's may also be independents with clinics nearby. 

    I am not a medical professional, but I take great interest in breakthroughs and have ended up knowing several IR's who have changed people's lives. If you want to find an IR in your area I am happy to try to help you locate a few. I get ZERO out of doing this. You can either reply to this post, or email me and I'll help.

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    • Posted

      Hi Bill,

      Thank you for your reply, I have just researched all about the above and can admit ive never heard of it before, but i will tell you this If my consultant wont do what i want them to do I will look into this further.

      so thank you Bill

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    • Posted

      Any major city in NA has top quality IR's who do this and many procedures regularly. Just ask how many of them they have done. I do not see a way to attach files to this web site, but if you search on UFE you should find plenty of information.

      The short story on how this works is:

      1) IR's are THE specialists at going non-invasively through veins and arteries to get to where the issue resides, in this case, fibroids.

      2) They inject a few fiber slivers to where the fibroid is attached, essentially cutting off all blood flow to the fibroid/s

      3) The fibroid shrivels up within days

      I cannot absolutely verify everything I describe above is totally accurate, but believe it is true or very close, based on extensive discussions with IR's, and reading articles on the procedure. Good luck!

      PS If anyone is out of Chicago or has easy access to it, 2 top IR's here are Dr Robert Vogelzang, and Dr Steven Smith. There are several others here, and these guys know many IR pros in other cities to reach out to. Good luck!

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  • Posted

    This note is for Christine from Spain. I am almost certain that top IR doctors can be found in major cities in Spain, because I believe at least one of them also pioneered a male prostate procedure called PAE (Prostate Artery Embolization) which may revolutionize how to better deal with enlarged prostates. The alternatives for male enlarged prostates are not very good.

    Just search for "Interventional Radiology Spain Fibroids" and see what comes up. Good luck! 

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