Hi ladies!
I went to a gyno last week to discuss treatment for my 5x7 intramural fibroid which causes me heavy bleeding and sometimes a pressure towards my tailbone.
I was curious about having a embolization but my gyno thought that Esmya would be better for me to start with.
I have so many questions that the gyno couldn't answer (!) so I hope that you who have been on Esmya would like to share your experiences and can help me answer some of them. I am mostly scared of side effects, if it will affect my work, libido etc.
The questions I have for you are the following:
After finishing 3 months on Esmya, how was the bleeding? Was it much lighter after that?
How much did your fibroid/fibroids shrink?
What side effects did you have? Were they transient?
Has anyone been on them for longer than 3 months? If so, did the fibroid continue to shrink?
Will the fibroid stay small and bleeding continue to be less after I finish Esmya? Is it worth taking?
Is it safe? Would you recommend it?
I might add that I'm just turning 40, have to kids and want to avoid having a hysterectomy.
Looking forward to hear about your experiences.
Thank you!
Hiya
My understanding of Esmya is that it's a pre opp drug to shrink fibroids that are to big to opperate on. But are used to shrink smaller fibroids by gyno has a first resort to help relieve painful symptoms. You can have a opp just to remove the fibroids if that option has been given by your consultant. Which will help save your uterus. There is no guarantee that after taking Esmya the fibroids will not grow back after time. After many year's of suffering with fibroids and given Esmya to try it didn,t agree with me. So decided on a hysterectomy which after 6mths post opp I feel so much better. I had a total hysterectomy has I had multiple fibroids and polyps on my ovaries. I hope you go on ok with your decision to take Esmya or to try another solution. ☺
I was given esmya to shrink fibroids as I didn't want a hysterectomy, although I have completed my family. I was on it for 3 months, didn't have any side effects and the fibroids shrank by about a quarter. My main symptoms were pain rather than bleeding and I didn't notice any difference after the esmya. I then opted for an embolisation, which was not a pleasant experience and I wish I had just gone for a hysterectomy and had done with it! From what I understand the esmya is just a temporary solution and the fibroids will likely grow back when you stop taking it. Good luck x
Hi
I was prescribed Esyma last September due very heavy periods and took it for 3 months and had 2 month off as you cannot take it consectively after this.
I had a ultrascan in November and the fibroid had shrink. I only had one period in the 'break' and it was not as heavy as I used to be. My consultant was happy with how it was going but did not think the fibroid has shrunk sufficiently stop heavy bleeding. So I was prescribed another 3 months which will take me to February. My consultant is going for a non-invasive approach and there has been no talk of operations thank god!!
When I first started taken Esyma, it left me tired and with headaches at the beginning. This got better, as the headaches becasme sporadic and I got use to tiredness. Someday I just felt it more than other days.
When you come off the Esyma for 2 months, I did have a surge in energy and obviously the tiredness came back when I went back on Esyma.
I hope this helps.
Hi , I have taken 2 courses of Esmya, a year apart. first time was as pre op to shrink them before a myomectomy and seconds time just to give me a break from bleeding. in answer to your questions
1. after the 3 months , my period returned to being heavy. While on it my periiods stopped and then came back one month after i had my last pill
2.it shrink mineby about a third, thnk they were 11cm and they went down to 8cm
3. I had no bad effects from it
4.as far as i know you can only take it for 3 months with a break between courses
5. for me personally i feel like the fibroid grew back to the size i started with once off the esmya.
6. i would recommend as it gave me a break from bleeding so i could have a normal life for 3 months.but i do not feel its a permenant fix
Hi I have one fibroid about 12x13x11. I have incredibly heavy periods to the extent am wearing 3 long pads and the most absorbent tampon I can find. At the heaviest a changing every hour. Have experienced flooding and literally can't leave the house for a few days. They last about 9 days.
I first took esmya over a year ago for 3 months. The fibroid shrunk slightly, but the bleeding stopped. 6 weeks after stopping periods came back as heavy as ever. I was prescribed it again after 3 months and period stopped for duration. Normally you are only allowed to have 2 lots of treatment, but I have just finished my 3rd round. My fibroid has actually increased marginally in size during treatment, but I will find out next week just how much. I suffered no significant side effects had hot flushes but this may be just my age 46. I would recommend the treatment, but it isn't a long term cure. Hope this helps
Hi. I'm in a very similar position to you and thought I would share my experience. I am following this discussion with a lot of interest. I have a 7cm submucosal/subserosal fibroid which causes me very heavy bleeding, so much so that just before xmas I had 2 emergency admissions to A&E over a week with haemorrhaging, total blood loss of about 30%. Fairly traumatic! Now on norethisterone and tranexamic acid and consultant wants to start me on ESMYA in 2 mths time - slow wean off the norethisterone to prevent another haemorrhage and coil has been inserted to help with that. He was involved with the original trials of ESMYA and has had good outcomes but I too also hear from other women who it hasn't worked on and that worries me! He's expecting a 20% shrinkage after 3 mths and then another 3 mth dose before surgery, likely hysteroscopic resection +/- endometrial ablation. He did say there was a chance I could stay on the ESMYA but I really don't like the sound of that. I'm 47yrs old, fit and healthy (or at least I was!!) and have 2 young children. I don't plan on having more children but i really don't want to have a hysterectomy - not only because it's major surgery with associated risks but there are possible long term effects of hysterectomy and there is some thinking that it actually produces hormones (not only the ovaries) which are beneficial into later life. I feel like I don't have a lot of options at the moment as i'm terrified of haemorrhaging again and feel dependent on hormones to control that. if the ESMYA doesn't work for me, I think I may have to reconsider hysterectomy. A myomectomy is out of the question apparently because of the position of the fibroid and the high risk of severe blood loss during the surgery - it would likely turn into an emergency hysterectomy!! I can keep you posted with how I get on with the ESMYA. Are you due to start it soon? Or are you just looking at options at the moment.
Wishing you all the best and a fibroid free future.
thank you!
Hi Caz! Wow, your thoughts sounds just like mine!! I can manage and go on for a little more time like this but I know I need treatment soon. I would wish for the fibroid to magically disappear without having any hormones or surgery but I know I need to take Esmya soon.
The past months I've begun to feel a fullness and pressure and it really bothers me. It's like a constant reminder that it's something there.
I too are fit and healthy, doing yoga and eating organic.
I'm just wondering why one should be on Esmya, risking having side effects and then once off them the fibroid will stop growing again? I just don't see the point to take them if the results are not lasting.
I share your thoughts on hysterectomy. I don't want to end up there. It's so frustrating not having more option, don't you think?
Let's stay in touch ok?
All the best to you!
Hi, I have the same problems as most of you, several large fibroids which have been causing pain, pressure and heavy bleeding. I am 59 but have never experienced menopause as the fibroids bleed continuously.
I have taken Esmya for 2 3 monthly periods, and each time they have reduced the fibroids and stopped the bleeding completely. The reduction was by about a 3rd. I suffer no real side effects on Esmya, other than menopausal ones such as flushes, but this is welcome.
I was hoping that by taking it, menopause would kick in and the fibroids would not grow again, but each time they grow back in about 3 months. Don't really know what to do now, was hoping to avoid a hysterectomy, which my gynecologist thinks is inevitable.
Hi Christine. So sorry to hear about your difficulties with fibroids. It must be so frustrating for you as well, knowing that menopause can't be far off! Has your gynaecologist suggested other options e.g. myomectomy, uterine artery embolisation or hysteroscopic resection? I'm about to start ESMYA to shrink my fibroid pre-surgery and the latter 2 are what I'm considering as I want to avoid a hysterectomy too. Myomectomy isn't an option for me apparently because of fibroid position. Hope this helps.
Hi Caz, no I have several large fibroids embedded in the uterine wall, my uterus at worst was the size of a 4 month pregnancy. I had an MRI which showed so much bleeding in the uterus that it was thought it could be endometrial cancer, but a biopsy ruled that out. A full hysterectomy was considered the only option. I live in Spain and have seen 2 Gynaes privately, both of whom don't see any problem in 'removing something I don't need any more'. I am worried about the op though, as the size of the uterus means it will be a large midline incision and involve a prolonged recovery time. Seems unnecessary but if the fibroids don't stop growing I guess I will have to have it. I always thought they would stop growing at menopause......
i am very simiar to you, large fibs embedded in uterus, 5 month in size. had 2 courses of Esmya and once off them seem to be back to same size as b4. i've had myomectomy, that did not work and was also told hysterectomy would be the only option. im in my 30s with no kids, so would be a major decison. was hoping to stick it out till menopause and hope they shrink then, how old r u Christine?
just saw your post above, its so hard dealing with them isn;t it.
Must be really tough at your age, menopause could be a long way away, When I was first diagnosed I was 50, and thought it would all be over in a couple of years, but was told after an ultrasound that my ovaries were still producing eggs, so I was not near menopause. And here I am 9 years later in the same situation. An added stress here in Spain is the language problem, and, because my condition existed before I took out medical insurance, I would have to pay the full cost of the operation.
wow, thats a long time, i am 3 yrs in since diagnosis and not really any nearer to a resolution. Can only imagine how hard it is with the language barrier.
Hi fibroidy.. so to sum it up, you wont recommend esmya? Im 34 and hv 5cm i think subserosal fibroid. I dont know if myomectomy is best for me as i still want to get pregnant. With esmya got worried with all mentioned side effects like more gain weight, shrink a bit but re grow again. Just weird effects.. what can u advise?thanks
I did like Esmya as for me I did not have bad side effects. When I took it my periods stopped and I felt like the fibs shrunk, but not having a scan for a few months so just guessing from the feel of them that they have shrunk slightly. You can not get pregnaut while on Esmya. If you want to get preganut soon , you could take esmya to shrink the fibs , then try to conceive.
Hi I am coming to the end of my 3 month treatment. The rest from heavy periods was welcome as pads, tampons and flooding , changing products every hour was expensive and inconvenient. I have 14 days left of my 1st 3 month treatment and had a light bleed this morning -is that normal ? I want to know if it has shrunk and I am scared of the returning periods before next course. I have suffered hot flushes at night and fatigue, weight gain and dizziness. I hope it's worth it to shrink my 9 X 9 fibroid.
I think you can have small bleeds at any time, after 2 months on Esmya my bleeding stopped completely, but as I am past having normal periods maybe that just meant the fibroids were not growing. I'm now 20 days into my 3rd course, still getting a bit of discharge but nothing more. I didn't bleed after my first course for about 3 months, how long a break will you have between courses?
Hi all after a year of severe heavy clotting bleeding and constant pain I finally went to see Gp. After multiple scans ect I was diagnosed with a huge 13cm x12cm fibroid and ovarian cyst.After several admissions to hospital I was given prostap injury, which has reduced the bleeding, but I am still in pain. I went to see the gynaecologist on Monday and have no option but to have TAH, I am in full agreement with this decision
I am starting Esmya purely to shrink the fibroid ready for surgery.
Reading all the comments I will be happy just for a break from the constant bleeding, surgery should be in 3_4 weeks time.