Esmya

Thx you cookiesson for replying I could not have children of my own so can see where studies have put me in the category of may suffer with fibroids, I'm leaning towards Esmya. I'm 50 next year so hopefully this fibroid n any other fibroids will cease to grow. My hormone blood level was 64% when tested when asked Gp just said your menopausal. Does it mean when reached 100% it's the end of it or will get worse?

Thank you Fibroidy for replying I am thinking more towards Esmya but I'm bit concerned my uterus has dipped down to has it is quiet painfull n sore or weather it's the fibroid making my uterus painful be sore. I go to see my gyno this week. I was hoping to have my mind made up before I go. Glad to hear it is worked for you and hope all is going ok.

thanks Kizzy, I am recovering from a myomectomy and have to go for a scan as some fibs were left behind ;(

It really hope te esmya works for you also , as a surgery is not an easy ride.

Hi Fibroidy, I have been diagnosed with multiple fibriods, one being the size of a grapefruit. At my first consultation, it was suggested that I have a hysteroectomy, I said no, as Im ony 41 and have no kids, so they fitted the mirena coil, to try and shrink them, but that didnt work, only my symptons of bloating worse, plus I experienced otehr side effects too. I had a follow on apt with my gynae on Friday - again he recommended a hysteroremy which I said no to, and he suggested Esmya, to take it for 3 months than take a break and taKe it again - Im not having surgery - I know you have taken Esmya, and you didnt suffer side effects but do you know anything about long term use of the drug? I cant seem to find much information on it and not a lot either on the side effects - any advice?

Hi Dee, as far as i know in the uk, esmya is only licensed to take for 3 months at a time and you can only do it twice, so its not really a drug to be used for the long term.  I think at 41 you must say no to hysterectomy and push to get Esmya at least to take for 3 months, though the size of the fib will only shrink to plum size at most.

Drugs effect everyone in different ways, but not come across anyone having any horrible side effects. 

Hi Fibroiody, thanks for your reply....Yes as far as i know its only licensed to take twice, but my gynae said he thinks thats a con and that you could possible take it for longer....I think I'll give it a go anyway and then if they shrink, try and keep them that size with diet & herbal treatments.... have your fibriods stablised after syrgery or are you still battling with them?

hi, i would say its not a con, its the trials the drugs have to go through are extensive and at the moment are only considered safe for the time limit they are licensed for, with more clinical trials in the future it may be found safe to take for longer.

As for me, my fibs started at 8cm a few years back, went on a anti ostrogenic diet for over a year but they grew to 11cm, then went on Esmya for 3 months and they went back down to 8cm. Now i had a myomectomy 2 weeks ago, so at home recovering, they took some out, but there was some they left behind, so going back for an mri. So at the moment, will go back on diet changes and wait for my next periods to see how they are. My main problem the fibs were causing were the heavy bleeding and passing massive clots which resulting in bad anemia which led to a blood transfusion.

I hope you get somewhere with the consultant and you at least can give the Esmya a go, before any surgery, i would say a hysterectomy is a bit drastic. The myomectomy recovery so far is ok.

Where would i find information on the anti ostogenic diet? I hope your recovery isnt too long and that it all works out for you..... Sometimes being a woman is just so unfair...... xx

So true, my next life i am going to be cat lol

I am in the process of putting some info together on diet changes, when i have it i will pm you or post a link here

 

Hi arkana

omg that sounds really bad and must have been terrifying.

My first fibroid bk in 2012 was size of cricket ball n because my body felt terrible it got detected.

I thought embolisation was the prayer I was looking four and like you wanted to save my womb. Three years on nearly I have one sitting on the front wall n again feeling not good. I'm hoping when I turn 50 next year nature will take its course n put a stop to any more growths. I'm glad your well again n no more growths.

Hi Arkana!

Thank you for telling your experience. May I ask you your age? 

I have been defending my uterus for 3 years, (I have 2 almost 10 cms fibroids and several smaller) but lately i have been cornered, 2 weeks ago I had my first blood transfusion, and started my second round of esmya (not very succesful first time in shrinking them) so I have only 2 options at this point: embolazation and partial hysterectomy, i am only 34 years young hehehe....did you contemplate the embolazation?

Thank you in advance for your time.  

Hello.

I feel you.

I'm 37 years old and haven't had any children yet and have had problems with fibroids since my first operation in 2011.

In 2012 I was told I had a really big one and after that things has just escalated. 

I've gone through 2 rounds of Esmya - 6 month - didn't help one bit... Turned out that I have another genetic than the ones that Esmya helps. 

I've tried pretty much everything else there is under the last 3 years.

So I hear you.

I do not think that hysterectomy should be the very last option, for every women. Especially not for someone as young as you!

I had an embolization/UFE done on Nov 11th 2014. 

It helped me with the size, like 50 %. The size of the whole uterus and the fibroids. BUT... since I'm truly determined to have children within 2 years, it's tricky with UFE... which I knew before the operation… Which was the reason that I hesitated so…

But my doc thought that UFE was my best shot, since she thought my fibroids were too big to be able to operate with regular myomectomy. 

But now I've learned that that was wrong.

If a doc say they cannot do a successful myomectomy on you, referring to the size and amounts of you fibroids, it's only because these doctors aren't good enough.

After I have gone through the UFE I have found 3 docs in the US that could have operated with myomectomy on me without any problem.

But... I just didn't know... 

So... one needs to do ones homework... cause the docs won’t tell you the truth... or they don’t know any better.

If you can find a truly good doc, that person will be able to operate on you and you won’t be needing a hysterectomy.

So where do you live?

I know of some really good ones in the US. 

I myself live in Sweden, and I had a really hard time finding a really good doc in the whole of Sweden... so... 

Hi there!

thank you so much for replying!

I am currently living in Canada, and this hard time began in june 2013 ( I knew I had 2 big fibroids since 2008 and had a long menstruation, but not very heavy actually, just heavy flow the first 2 days, but then just spotting until day 9 or 10).

In 2013 I was able to have health insurance and I had a GYN that is when the situation went bad. The GYN gave me Lupron injections to control the bleeding, it never happend, actually I did not stop bleeding for 10 months, not even 1 day! The 2 big  fibroids were almost 9 cms, Lupron shrunk them like 1 or 2 cms, but having Lupron was a nightmare, I went to the hospital several times due to heavy bleeding, my anemia was dangerous. Then I refused to have more Lupron, I was off medications for 3 months , with long periods, I believe my hormones went mad with all those chemicals I had, but In march one day I started bleeding heavily and 2 hours after I past out on the kitchen floor, so to the emergencies again. The GYN put in  Minera coil, and if I was living a nightmare before, this was HELL!! It stopped the bleding but I was extremely bloated and in pain for a month, then the menstration came and i practically delivery the minera coil while experiencing the worst pain I have felt, yes i believe I was having labor pain, they gave codeine, it barely gave me some relieve. Then I was off medications again aprox 3 or 4 months, I felt better but bleeding heavily. I decided to change GYN, finaly In september last year I had one and I started esmya, (here is called Fibristal). I did not stop the blleeding until 2 months after, so I had like 2 dry weeks. I finished the first round first week in december and on 24 i had one of the worse hemorrage! I think I was lucky i did not died. I had the 2 months off and started again this month, and also had a blood transfusion. I do not want to have children, it never was my dream or desire.....

Hi  undecided - i am 43. I already have three kids so becoming pregnant again was not an issue for me. I had embolization, but although it was a technical success, it did not prevent the fibroid from growing. Have you looked into Acessa? (try google it). I think it can help many women. Unfortunately also this did not work for me, but mine was fast-growing, had many veins and outside of the uterus (and large, when i had the embolization it was 8 cm, Acessa 15 cm, and when they took it out the size of a basketball..). Embolization can definately work, you will be in pain for a couple of hours (but opt for a morphine pump or an epidural and you should be fine), and need to rest for about 1-2 weeks, but you will be up and running. Acessa is also quit doable, but you need to have full anesthesia, so will need a couple of days to recover from that. Hope this helps, feel free to aks any questions!