Heavy bleeding week 5 of ESMYA. Is this normal?

Hi there,

I came to find this forum just because of what you describe :-( 

I have 2 fibroids, but one big submucosal one is the one causing me heavy bleeding. I tried progesterone pills (didn´t work), tranexamic acid (did work and then didn´t anymore) and now I´m 2.5 months into my first round of Esmya. first period I didn´t get, second I got, but was better than pre-esmya and now, 7 days after my period, sudden bleeding!! Totally out of the blue while having an after lunch walk at work. 

I see that your post is a few months old ... how did things work out for you afterwards?

Hiya

I'm new to the forum but since I'm having issues with my fibroids, I thought it be good to talk to other women who understand what I'm going through. I just turned 30, I was diagnosed with fibroids 2 years ago. They have grown to 6cm. Symptoms are 14 day periods, extreme flooding, horrendous clots (At one point I thought I was having a miscarriage but didn't know I was pregnant, it was just clots) and the pain that comes with it, I have no words. Thats the physical side of it, the emotional mental side as you will all agree is too much. I haven't had any children yet but think I may have to soon in the next 2 years. I have a boyfriend however we've only been together a year he's moved in and seems very invested in the relationship but I don't want to scare him with baby talk.

Today, I have literally just been discharged from hospital after a hysteroscopy and an attempt to remove a fibroid. They couldn't in the end because they found that actually the fibroid is sitting in the muscular wall of the uterus. The consultant advised I try Embsay or a myomectomy. He also advise I shrink them with emysa....have kids and then opt for the myomectomy.

Anyway as you all know this is all so stressful and scary, I don't really know anybody going through this, so thought it be nice to chat to women that know, any advice welcomed. Wish you all the best.

Hi there, you sound like you're in the same boat as me - I've two fibroids and one of them is deeper within the myometrium and the other is more superficial and looks like it can be removed. Ive tried all sorts with no real effect - co-codamol, mefanamic acid, trainexamic acid ,,,the lot. I've had two hysteroscopy attempts to try to at least debulk these but seems that the deep one which is large and very vascular, comes back almost fully again as the womb pushes more of the deeper layers to the surface again - back to square one as they say with symptoms-  which can be awful - two super tampons and a maxi pad and still flooding which I have learned to cope with. Unpleasant in work though. However it was the pain which I couldn't cope with. I usually ended up in the bath two three times a day, or if in work lying on the toilet floor in tears until it passed. I have been on Esmya for around two months now and this is in preparation for surgery this Friday under general anaesthetic instead of being awake.. I do feel Esmya has worked but I have had two periods since it - however instead of a whole week they seem to last a few days only. The pain intensity has been the same but again, less frequency. I still have clots as before but certainly things have lessened.

Im interested to hear about your Doctors plan - I.e that they have held back on the myomectomy. - wondering is that because of risk to damage to the womb in a young pt who is still to have children. My Doctor is going ahead and it's a bit of a worry. Overall however I don't think they can remove the deeper one without causing lots of scar tissue which means less healthy surface area left behind to allow for healthy implantation - I'm 35 now and need to think about children ASAP. I feel this year has delayed everything for me while waiting on referrals etc. Nice to know there are people going through the same thing.

Hi Rebecca

Sorry to hear that they have come back. Oh yeah I am totally at where you are right now, the super plus tampons and maxi pad, even had to go as far as to get tena lady pants, because of the leaking. And feeling your cervix widen to pass a monstrous blood clots and rushing to the toilets because you're worried it will slip down your leg. I have to say it takes a strong woman to go through this, you are not alone my love. How are you doing and feeling after your surgery? I hope all went well and that you are recovering OK.

Yes so my surgeon explained to me (while coming around from the anaethesia) that his options for me was esmya or myomectomy and he advised I start with the esmya, 4 courses and then think about having kids after that and then do the myomectomy. But I have a feeling he said that because maybe his team are not competent enough to do a successful myomectomy, or maybe that's my personal feeling, I really didn't feel "looked after" due to a number of reasons by this team and i am looking to get referred. He was also very against a laporoscopic myomectomy because he said the process may lead to "bits of your fibroids sticking to other organs and creating masses there".....I just found it super strange that he was very anti myomectomy, thought it was very suspicious. I felt like saying well isn't this what you are trained to do?! Don't be worried maybe your consultant with his experience is confident that this surgery is the best route for you and is confident he can remove them with minimal damage. I can't say the same for mine.

I wish you all the best, thanks a lot for sharing, hope your surgeon got all those fibroids out safely and that you are on the mend. And I totally get you with the thinking about children, there's a lot of pressure but I think we need to think about looking after ourselves first , which believe me I get it, it's hard not worrying about it

Queeni x

i want to also know you were taking esmya and other one same time.

Hi jay!!!

Glad to help you out with whatever i can share from my personal experience.

According to my ob/gym ESMYA does not stop bleeding.

It helps shrink the fibroid which in turn helps stop bleeding.

I was anyways suffering from heavy bleeding for a long time.

So decided to abort treatment half way through consulted another ob/gym who could do my surgery...as ESMYA wasn't helping my situation 100%.

As I mentioned in my post above that I was also on Primolut-N which helped the bleeding stop. But once I stop Primolut-N I have break through bleeding.

Also according to the gynae I have consulted ESMYA may or may not work for all. She says you have to try.

But I guess each person's situation is unique..so you have to take a call on what suits you best.

Hope you feel better soon....

And may be have two or three opinions and speak to some family member who could guide you also to come to a conclusion as to what treatment suits you the best.

Regards,

Positive gurl

No worries glad to help.

Are you having a submucosal fibroid?

Resection can be done only for a submucosal fibroid and usually thats the one that causes heavy bleeding and passing of huge clots.

Do share your experience with me as well so atleast we can all refer to these posts ...helps us women a lot to clear our head ,as such situations can be complicating ...especially when we need to decide what treatments work best!!

Cheers

Hope you feel better soon.