Esmya Tablets Fibroid Treatment

hi - mine is outside the uterus, not on a stick and it points forwards (i.e. i can feel it very well with my hands on my belly). Criteria are that there are no intestines in the way (i.e. at the front, you lie on your stomach and theHIFU comes from below), the location is in the front, there is not a lot of fat on the stomach and no scarring, and some other criteria. If you google 'vleesboom utrecht hifu' the first hit provides the information from the University Hospital where i did it. It now says the myoma can be max ±10 cm, but this is not too strict in my experience. They have funding to do this as research, so it did not go through my insurance and cost nothing - it is in Dutch so you might need google translate. Utrecht University is the only place in The Netherlands where they do this.

yes i have 3, am 41 - they did say though that there have been women that had healthy children after HIFU treatment, yet there are no long-term studies.

Thank you, thank you sooooooo much for all this information!!

Kim216- where do you live?

Also - when is your next period due? I would like to know how you are feeling and just how heavy your period is when it does come.....

So, ladies, let me ask about periods. I'm under the impression from my Doc and from the reading I've done on Fibristal that we are not supposed to get a regular period while on the treatment. I am almost a month on Fibristal, and I've continued to have weird, random bleeding - same as before I went on the Fibristal. I had lost a LOT of blood since the summer, so my doc had put me on progesterone to prevent more bleeding over the last 3 months, but it still seemed to happen.

I will bleed for a few hours each day, but it never lasts more than a 24 hour period. It goes away for a day or more, and then a few days later shows up again. I have to constantly wear a pad, because I have NO idea when it's coming or how heavy it will be.

I have not had many floods since I started Fibristal, just one, and that was early in the treatment.

But has anyone else continued to have random, irregular bleeding?

Hi Ladies... I have been following and adding to this forum for almost 2 months now....

I have yet to read one positive post about Esmya. Has anyone highly benefited from Esmya? Has your period flow decreased, has your fibroid (s) shrunk significantly? from what I am reading... everyone is pretty much the same.

I have so many unanswered questions...

Today I met with my OBGYN - he told me that I should wait 2 months after I finish the 90 days of Esmya (which is January 8th 2014) to see what my periods will be like. So, I see him in March to evaluate the situation.

I started acupuncture yesterday... I will be going once a week for the next 9 weeks. I will do what I can to get my life back. I want to quit living my life around my fibroids.

I am hoping for light at the end of this tunnel....

KirstinY - i am positive about Esmya - i had no side effects, three days of flooding while on it. The fibroid shrank 18% (which is 280cc in my case, and is comparable to the results of the large clinical study), my first period was very mild. I initially thought it was growing back very fast, but it is not. It is still large, but the shrinkage- even though not a lot - helped relief symptoms: no frequent toilet visits, i fit into my jeans again, and if it stays like this i would be fine. I do need to see how the second period goes and have another scan to see whether it grows again three months post-esmya, but i am def positive.

Hej Oddbit.

I’ve eaten Esmya for 26 days, and I’ve had bleedings every day since I started :'(

More so now the last week. I have heavy bleeding every day now… So much so that I now have to eat pills to help the blood to clot. But it just doesn’t seem to be working… And I'm having extreme swelling as well. My belly is bigger than ever and hurts.

Normally I didn't have any direct problems related to my fibroids, just that they are sooooo big I can’t have kids, so I want to get rid of them. So this situation I'm in now... is NO fun AT ALL... :'(

Since one doesn't have a period in the normal sense, the doctors say one aren't supposed to bleed. So I'm asking my doctors, why am I bleeding and what is it really. They dont know... So... they say to put up with it, or just stop eating the Esmyas...

Hi Cookiesson, in reply to your message a while back - there's been much discussion since

I live in England and done a quick google search on HIFU, thanks for the info much appreciated. There are some interesting discussions and information on this form of treatment. I'll do some more research and discuss it with my gp or consultant.

Also thanks for the confirmation about avoiding soya products.

Sorry to hear that you are having such a tough time with Esmya, I had approximately 3 weeks without any bleeding or spotting but still had to wear something as I was getting quite a lot of discharge. I have 2 weeks left. Its probably the fibroid bleeding and the chemical cocktail of hormones causing our bodies to react in such unpredictable ways.

It's all very unpleasant, we're all coping amazingly well considering and thanks for all the support ladies!

Hi Ladies!

Just an update, I'm now 5 weeks post opp from a hysteroscopy myoma resection of 2 large fibroids, this being the second part of the opp. Making the procedure 4 1/2 hours long. And just about to start my 3rd pack of esmya.

I can't say if the esmya has worked yet until my scan on 10th December but the side effects I've been having do not sound as bad as the rest of you. I'm having hot flushes, back ache and groin pain, spotting all the time which becomes heavier, the more active I am. I'm still having severe cramps, each time I'm so worried I'm going to flood or faint with the pain, but I think that is caused by remaning myomas and not the esmya.

The only real bleeding whilst taking the second pack of esmya was because of the operation. I also had a d&c before they cut any fibroids and at the end of the operation they used heat to burn the lining of my uterus, to reduce bleeding. This procedure is not advised to women who wish to have children, as it causes miscarrige.

The two myomas which were hopefully fully removed were submucosal on the top of my uterus and pedunculated on the left of my uterus. I have a few smaller ones left but hopefully the esmya is working on them.

Good luck and God bless x

Hi Oddbits

I had a similar experience to you but only when I was on Norethisterone but experienced the unpredictability of bleeding/clotting everyday for nearly 3 weeks I understand how unsettling this is. However this stopped when I had my first gynae appointment and she switched me to Esmya. It was horrendous for the first 10 days then settled down after that. with a mixture of heavy regular spotting throughout, the occasional flood and 3 weeks clear. However 3 weeks ago I had a v heavy random bleed with large clots for about 30 minutes then was fine again until last Friday when I passed the most enormous clot and bled quite heavily for around 30 minutes. I didn't pass out but felt quite dizzy. I have 2 weeks left on this medication and wont be given any more as I am due to have an operation mid January. So I am now already having anxiety attacks about what happens in between stopping the pills and my operation I've been told I# l'll probably have a period and from reading this forum likely to have withdrawal bleeding too! My only weapon will be tranexamic acid!! Presumably they wont operate if my blood levels are too low.

Hi ladies,

I am new here (unfortunately, I have to join the ''club''.

I have a pain since 7-8 months, on my pelvis left side, I went to GP, who sent me for an US. They saw a 5 cm fibroid , and a 5 cm ovarian cyst as well.

I went to see a gynaecologist, and he said, the 5 cm fibroid is VERY SMALL, and the cyst- is nothing to do with, try to take a contraception pill.

I have pain every day , and changes in my periods.

I am 32, no kids.

What should I do, can I see an other gynaecologist, but do I need a new referal from GP?

I fed up a bit now

Ella81, each woman is different. For me, i wished i would have known more earlier and addressed my fibroid situation sooner and had mine removed when it was smaller. It continued to grow and it's to a point now...13 cm x 13 cm, that it's still removable but only by a very talented surgeon and there is high risk of hysterectomy which makes me very sad. IT has grown by about 1cm per year. MIne also causes me significant bleeding, pressure, etc. etc. I would get a second opinion and have a chat about your options depending upon where your fibroid is and the side effects you are facing. maybe look for a dr. referral in your area with someone who has experinece and interest in Fibroids. Also, I just discovered the importance of Vitamin D (along with the rest of the diet stuff)...read up on it!

Hi Ella 81

I had an ovarian cyst on left ovary, and large fibroid. I am 45 and my family is complete. The cyst is

nothing to do with fibroid, mine has now been removed, honestly apart from hair and skin being drier, I

have had no side effects from its removal, however, I do appreciate what you are saying about a family,

but my other ovary is healthy. I was advised to have a hysterectomy this time last year, and was

emotionally all over the place, and was advised to have both ovaries removed, which would have forced me into an early menopause. My argument was why remove a healthy ovary, they said it is to reduce risk of ovarian cancer. Nobody in my family has this, so I refused, and sought a second opinion. I have had

esmya during the summer, and a myomectomy, periods are still long, but not as heavy. My consultant

now wants me to begin another course if my FBC is stable, which it is and I am back next week in

relation to this. Do not be frightened to challenge your GP or consultant, and take somebody with you,

so you can discuss afterwards things or questions you may have, because you do forget, and then

become annoyed for not remembering to ask. I did get sharp shooting pains when I had cyst, this does appear to have gone now, I just suffer with lower back ache, and I need to ask next time what the size of my fibroid is now, because I forgot to ask when I had scan.