Esmya Tablets Fibroid Treatment

Hi kk, my consultant told me that 3 months was the maximum time you can take Esmya for. I also took a 3 month course but unfortunately did not see fantastic results and as said above, now experiencing further problems so awaiting a full hysterectomy

I'm seeing the Consultant today and just started my third pack of Esmya. Hemorrhaging this weekend, SUCH a disappointment as although I have bled constantly through the last 106 days no flooding or hemorrhaging. So I imagine that the Esmya tablets simply havent worked or worked so little as to not make a difference.

Hi everyone,

I've just joined today (7/11/2013) i have just finished a 3 month course of Esmya in the hope that it as shrunk my fibroids of which i have several. On a scan i had before starting Esmya it was discovered i had a 20 week uterus. The worst of the side effects was very painful back ache and heavy tiredness. I have hospital appointment tomorrow and i so hope the Esmya as reduced them, i really do not want a hysterectomy xx

Hello.

I’ve been following this chat since March this year. Just before the Esmya was introduced here in Sweden.

And I think I want to share my story now, cause I think that I might have something that is of interest to others.

I’ve been having problems with fibroids for years. I’ve had 3 or 4small ones removed about 2 years ago.

That made my life a lot easier. Prior to the operation I had very heavy bleedings and pain. But with the operation the bleeding and the pain went away. I was just like in my 20s. I’m 37 years old now.

But, the operation just did away with the fibroids that I had INSIDE my uterus, the so called Pedunculated fibroids. Not the ones I have inside the walls – the Intramural fibroid or submucosal.

So unfortunately they kept on growing, and the biggest one is NOW about 10x8x5 cm and is in the back of my uterus and pressing the whole thing forward. So I kind of look pregnant. I now also have another 5 or 6 in the front of the uterus.

I’m not bothered by these in the same way as I was with the Pedunculated fibroids. I don’t bleed that much or have menstrual pain. BUT, I have to pee all the time and I look pregnant and the fibroids themselves are painful. Wearing trousers or other pressure against them is painful.

BUT… I REALLY REALLY want to have a baby and a family.

So I HAVE to do away with the bigger monster in order to even consider thinking about a baby.

So. Then Esmya seemed like a great idea! So I was prescribed Esmya in April, to start in May.

BUT… then I found out that this alternative method could help reduce fibroids.

Acupuncture. (I heard about this doctor in New York that does it very successfully.)

BUT I also found this lady in Sthlm that is said to work wonders.

So I went to her for 4 months.

No side effects. Just 2 hours of “rest” 5 days every month.

And I can say that the fibroids did NOT grow anything within that time. The big one actually decreased!!!! Like 0,5 cm or even 1 cm.

(I can say to all of you that have smaller fibroids, like 3-4 cm, that this lady actually can do away with them. Or acupuncture can do away with them. She has helped friends of mine. And others. Hundreds. Of course, it’s temporary. Not lifelong. But none of these other methods are either so…)

But… since mine is sooo big and since they are so many, it wasn’t enough. And I don’t have the time to do acupuncture for 4 years and see what happens. I need a quick fix…

So I just started with Esmya.

My 10th day today. And… I can say that Acupuncture wins any day of the week... In reference to side effects... I’ve just had the biggest hemorrhage I’ve ever had, and I had BIG ones for many years.

I’m going to choose to see this as an isolated incident and hope that this won’t be my everyday life from now on. And I’m going to believe that Esmya will decrease my fibroids more than acupuncture. So that I might be able to go back to acupuncture after Esmya and before a bigger operation, Laparoscopic surgery or Embolization.

I’m also taken up the diet that this other Swedish girl wrote about here recently.

I’m totally set on winning this f**king war against these monsters. So… that is my story. So far!

Cookiesson - I know EXACTLY what you're talking about.

I am currently on day 30 of Esmya - my second day I ended up in the emergency room due to blood loss and horrific pains.

I am so worried that I will hemorrhage after I stop taking all 90 Esmya pills. So I have looked into other options (minus the hysterectomy - I am only 32; no kids yet... .YET)

I have been doing TONNES of research on a procedure called "Acessa" (Global Fibroid Embolization) Currently, there are 2 Doctors in Canada who do this procedure - which treats fibroids; they DONT GROW back. One Dr is in Regina, Saskatchewan the other in Hamilton, Ontario.

I encourage you all to google this procedure. I know there is also a clinic in California, USA that does this procedure too.

Good luck to us all....

Thanks for the luck Kristin Y, I think we al need it!

Thanks for sharing your story cookiesson. I've never considered accupuncture, I think mine are too large to consider it now but if the esmya is working it couldn't hurt to try. I hemorrhaged on and off for the first 10 days after taking it. Luckily that was on the back of receiving a blood transfusion 2 weeks before otherwise I would have been back to A&E receiving more blood But after that it settled down and I had no bleeding. I have the odd spotting and a couple of random floods with large clots but otherwise fine. I've just started my 3rd and final packet today and seeing consultant next week following an MRI scan I received a couple of weeks ago.

Kristin Y - is Global Fibroid Embolization the same as Uterine Artery Embolization(UAE)? I was told that it would work on my smaller fibroids but not on the larger tennis ball sized one (the hemorrhaging maker at the top of my cervix) as it is highly likely to have its own blood supply Unfortunately a hysterectomy seems to be my only option - i just want to get my life back!

Good luck everyone!

Hi Sporty Chica.

I just took this blurb from the Acessa pamphlet I received:

"The Acessa procedure is a new minimally -invasive, same day (outpatient) therapy for fibroids. It uses a technology called radiofrequency ablation. Each Fibroid is destroyed by applying energy through a small needle array. The surrounding normal uterine tissue is not affected. The destroyed tissue may then be completed reabsorbed."

Hi Cookiesson,

where in Stockholm? Did it help with reducing bleeding and pain? I had two large fibroid removed 3weeks ago, one of them took two surgeries to be removed as it was in the uterus wall, I am on my second pack of Esmya, to shrink what is left of it. I'm also on the alkaline diet. But i'm still in alot of pain and bleeding, although it is lighter now.

Thanks

Hi Sarah03667 and KristinY amongst others

Thank you KristinY for sharing your experiences. I’ve already googled the Acessa procedure and also talked to people that treat cancer with similar procedures. They also say that this procedures work for smaller tumors. But, I’m still hoping that my fibroids will shrink a bit with Esmya, food and acupuncture. So maybe I could use the Acessa procedure in the future!

I think that it is important to not take the first doctors opinion and advice as the only way to go.

I’ve met soooo many doctors that seriously seems to know less than me! So don’t just listen to the doctor you happened to run in to.

Investigate. All over the world. Especially for us that haven’t had children. I’m just NOT letting ANYONE take my uterus. No way.

The acupuncture is of course an alternative method, and the Dr works from home. On Stora Essingen in Sthlm. Her name is Dr Nie. Google her. Not that much info, and all in Swedish too. But she does tones of different things. Some people might think she’s a quack. BUT, I KNOW what she has helped a lot of people. Tones of women has been able to have babies after seeing her. But she is alternative in the exact meaning of the word But I really like her

A fibroid is a type of muscles tumor and acupuncture works with muscles.

Acupuncture doesn’t in itself, take away the bleeding. Maybe pain. I don’t know. One can say that the acupuncture Dr Nie does, works exactly the same way as Esmya is supposed to do. But without side effects and without f**king with your system.

Hi everyone, it's been great to read other people's frustrations and experiences. Mine were diagnosed in 2010, I had been having the heaviest of periods for years and just thought it was normal! Then i found a lump and the 'things' were found.

I had mine embolised at the end of 2010 by Dr Paul Crowe who is one of the top radiologists in this field, I can recommend him and he does do NHS or private.

I thought that had done the trick, sadly not for me, even tho it has worked for many others, my periods were slightly better, nowhere near as much pain as before, and much less clotting, but the 'things within' just kept growing, I have many, inside and outside of the uterus, the biggest is subserosal at 12cm x 12cm and is so uncomfortable, it's difficult to sit up straight and pressure is constant on my bladder.

I really dont want a hysterectomy, I am scared to death of surgery, and I have had to fight to see a few different consultants for options.. I have really had to fight to get Esmya. I just wanted to give it a go.

So I was finally prescribed them and I have three weeks left, I have to say for me, and I really hate chemicals, it was a tough choice to take them. They are pretty horrid.

I have felt nausea, dizziness, really fuzzy headed, exhausted, unable to concentrate or think properly and quite confused most of the time. They also act as a great appetite suppressant, as I have not felt much like eating as I feel quite nauseaous., I have lost weight, only a few lbs, but it was weight that I had been trying to lose for months with exercise and diet and not succeeded, so I can only think its due to the mass in my tummy decreasing?? Or weight loss from eating less?

I also seem to be very dry vaginally and have got a case of Bacterial Vaginosis that I can only think is due to the pills. Will be seeing the docs about this next week, but dont really want antibiotics on top of the Esmya making me feel more rubbish!

On the positive, they have made me sleep well at night, even if I do wake up confused about what day it is in the morning... and I have had no period or bleeding whilst taking them.

My tummy does feel slightly less bloated, but I will book and pay for a scan in three weeks to see if anything has changed at all. ( I say pay for as the waiting list is anything upto 6 months, it really is ridiculous!)

Sadly my one fibroid is so large that they just want to whip out everything and not even consider a myomectomy, and I really dont want a huge scar so its taken me an age to find a surgeon willing to do it by keyhole If I decide to go through with it..

So I just don't know what to do.. am petrified of surgery, and with the tablets coming to an end, the thought of a period again is filling me with dread..

It is comforting to know that others are suffering too and I cannot believe that in this day and age, surgery is still the only option at the end of all of this.

Good luck to you all and I will let you know my scan results regarding the hopeful shrinkage of the thing that lives within!! x

I like your spirit and perserverence Tigrou and agree wholeheartedly, in this day and age hysterectomy should not be the only option. I too will be on the search for a surgeon in Canada that will and can perform keyhole. All i can say is thank god for the Internet because I am finding a real lack of assistance as well and forward thinking docs that can instill confidence in me.

I'm not sure when you take your esmya. I am now almost through pack 2 and was taking in the morning. I now switched to evening and i seem to be better functioning in the day. As well, even though I am bleeding less i am really trying to be on top of my iron consumption and i think this is also making a difference in terms of fogginess, fatigue and dizziness.

Best wishes, and hopefully the side effects subside for you. check out clinicaltrials.gov

Perhaps one of these will meet your needs. And from my investigation, the doctors involved in these seem to be top notch in their fields.

Tigrou1974 I too am worried about surgery. I am booked in next Tuesday done the research to see what happens but it doesnt make me feel any better. I have finished my 1 and only packet of esmya and wasnt given a repeat prescription. I couldnt tell whether or not it was working as I did still bleed at times.

Hi Catherine I just wanted to say I'm into my second week post op and I was really worried. I ended up having full total hysterectomy to remove 11 fibroids and I have to say yes first few days are pretty uncomfy and awkward but each day you get a little more mobile! I was very swollen but most have that has gone down I'm back in normal clothes and actually feel quite well! Listen to the advice be prepared to take things easy and a day at a time! I don't regret at all having the surgery and looking forward to putting it all behind me! You will be fine!

Thanks Heather 149

Greetings all! I am in Canada, and I'm on day 11 of Fibristal, which is our equivalent to Esmya in Europe. I'm taking it in hopes of shrinking my fibroids. I have three of them, and the most concerning one is 3cm, right in the centre of my uterus. The others are in the wall, and my doc does not think they were responsible for causing my horrific blood loss. The first 5 days with Fibristal was less than stellar. I started it at the end of a week of huge bleeding. I have not had a regular period since July - he has had me on progesterone, because I cannot afford to lose any more blood! Regardless of the hormone treatment, I had a huge bleed the week before starting Fibristal - and the doc cannot explain why I continued to bleed - BUT - Started Fibristal, and had a bit of bleeding for the first three days, but as of day 5, felt much better. Headaches and the mental fogginess were gone.

Ive started with some gentle yoga again, and I'd like to begin some weights. I'm staying away from jogging, as that seemed to just make me bleed.

I think I'd like to try swimming, because I need to do something for my cardio (and my sanity) I'm normally very fit, and I want to stay that way, and keep the weight off, because if this works, I'd like to try and get pregnant.

What kind of fitness routines have you all been able to continue with?