Fibroid HELL advised to try EMYSA, any advice welcomed

Women's health
1

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.

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Hi Queenie16,

Firstly, I'm sorry to read that you are going through this too, but you are certainly not alone.

When you are first diagnosed with a fibroid(s), it feels like the clock is ticking and you are being forced into big decisions. Take a step back and breathe. It all gets a little overwhelming and for me, it certainly got me down so much that I felt I'd never see the end of the horrendous bleeding.

I'd suggest trying the Esmya, it has certainly helped me. It takes a while to get into your system, maybe 4 weeks or so. The side effects for these first weeks are rotten, but persevere and you should see a difference in the bleeding. If it wasn't for the ladies on here I probably wouldn't have kept going with it, but my bleeding is now much improved and I feel that I'm in a better position to make decisions now. Before I was so desperate to stop the bleeding I'd have done anything, and I wanted it done yesterday.

Fibroids don't burst or rupture, and you can live with them for a long time. So try to manage your symptoms first so that you have a clear head for the bigger, scarier decisions that need to be made down the line.

Secondly - do your research. There's not a lot out there, but go to see your gynae/consultant armed with as much information as you can. Don't take their recommendation as your only option. Ask about treatment options, challenge what is suggested. At your age myomectomy carries risks, especially if you want to keep your uterus intact and have a family later on. Weigh up all of your options.

And finally: talk about it. Rant, ask questions, cry. Whatever you have to do. All of us here are in the same boat and know how you're feeling right now. So never be afraid to speak up 😊

It does get better!

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Hi i have sufferd same pain bleeding bloating for 4y now i tryed emysa saddly did nothing fir me my fybroid in inside the wall of my uterus and is size of a grapfruit. I have had my children and are all grown up i am booked in for a hystorectmy. 19th dec its the only way they can get rid of this as its feeding off a artery in my uterus to tell you the truth i cant wait to get rid of this devil has made my life hell goid luck with esmya hopw it does the trick for you

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Hey 2011

Thank you so much for your encouraging words, that is exactly what I needed to hear coming out of hospital yesterday.

It's just a lot isn't it! These terrible growths just suck the physical and mental life out of you! But yes, I agree, we need to allow ourselves to have sad days but then try and pick ourselves up afterwards, stay positive and be proactive. I wish you all the best too lovely xx

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Hi, I have been living with fibroids for over 10 years, I know how hellish the bleeding and pain can be. I found that Esmya was the only thing that worked for me, it does take time and you'll need to take it for at least a couple of months before you see a difference. It should stop the bleeding and start to shrink the fibroid. However you will get menopausal symptoms and some people have headaches, tiredness, dizziness. I am 59 so that was not a problem for me. Also this is not a permanent solution as the fibroids grow back when you stop taking it, and you can't take it continually. At least though it may give you a break from the bleeding and give you time to reassess the situation, as to whether you want surgery. 

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Hey there, 

I'm 30 yrs old with a 11cm fibroid. Only discovered it in October (deep down i knew something wrong wrong for a while). 

I'm seeing my gyno on Thursday and will start Esmya as soon as it lands in Australia this week hopefully. 

I feel you. I really do. I don't have a BF atm, and anytime someone asks me if I have a partner and whether I want kids, my heart breaks a little. 

Feel free to send me a PM if you want. This is a scary journey we're going through especially because we're so young to be dealing with these ba5tards. 

Just been reading about people's experiences with Esmya re side effects. Didn't realise it came with so many. Was hoping it'd be relatively easy. That being said I think it's our best option to try it first. It appears to be pretty successfu in shrinking them to make surgery easier. I thhhink (dont qutote me) that Esmya has a better success rate with the fibroid is 6cm or smaller so that's a good start for you! 

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Hey Jess

I know right! A complete nightmare, it affects so much of your everyday life and your mood...I've noticed I've become a lot grumpier and moody, I'm not the same and thats heartbreaking as you understand too. But I'm glad I'm chatting to women who are going through this too, because now I don't feel so crazy.

Men or no men in our lives, I'm slowly understanding that we need to look after OURSELVES first. That's the most important thing, I'm in a relationship (right now)you'd think I'd be happy, but I'm not enjoying it as I should be and have become more crabby and impatient.

I know it's easy to say don't worry about the long term getting married/having kids (hell I worry!), but I truly believe "it ain't over till its over" keep fighting for whatever you want. And that starts with getting our "happy" back (my new year resolution)

Oh definitely, same to you, any time you want to chat, PM me.

Just like you i want to start ESMYA, I'm just waiting for my follow up appointment to get my prescription.

I hope your Thursday appointment is helpful and informative

Queeni x

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Hi Queenie16,

Another thirty-something here with similar struggles! This is actually my second round with fibroids as I had a myomectomy 6-7 years ago. Life was good until about 3 years ago when I noticed my periods were becoming a lot heavier. I went to the NHS suspecting the fibroids had returned but the doctors weren't very helpful and said they couldn't do anything anyway unless the fibroids were life threatening.

The heavy bleeding continued and fastforward to this past summer when I ended up in the emergency room severely anaemic and in need of a blood transfusion.

Anyway, I saw a specialist OB/GYN who prescribed Esmya. I ended the 3-month course about a month ago and thankfully, I didn't experience any side-effects, which was one of my biggest fears. The list is scary!!! So just keep in mind that everyone reacts differently and try not to let it make you anxious. (I know it's easier said than done.)

Esyma didn't stop my bleeding completely but gradually reduced the heaviness over 3 months. By the 3rd month I didn't have any clots or extreme flooding like before. It's definitely worth a try as many women report good results.

Unfortunately for me, my fibroids didn't shrink as much as the dr had hoped so I'm going to start on a stronger drug called Zoladex. The side effects also look pretty scary (like painful menopause) but I have to remind myself that it was the same with Esmya and I was fine. Fingers crossed.

Since I've never had children and would like to someday, the dr wants to manage my symptoms for as long as possible before doing any type of myomectomy just before I start planning to conceive. I'm not keen to go through the surgery again so happy with that approach. However it was also the most depressing conversation ever given that I'm not even dating anyone at the moment. 

Anyway, excuse the long post. Just to say that you're not alone in this. As 2011 said, arm yourself with as much information as you can and don't be afraid to challenge the dr. I had to ditch my first consultant because she never presented options - only prescriptions - and she was terrible at explaining how they could affect me.  Ask lots of questions.

Another thing I've found helpful is focusing on ensuring my lifestyle is healthy and contributing to my wellness. I've revised my diet and nutrition and excluded or minimised foods that can feed fibroids. I'm also getting back into a consistent exercise routine. Anything to keep my mind off these monsters! 

Anyway, hang in there, queeni16! Wish you the best as well!!!

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Hi queeni... I am 27 and just discovered a fibroid right above my uterus.. my gyno tells me that it is a fairly large one and I have an appointment with her next month to discuss further options. I'm really glad I found this forum, I was starting to feel very scared and alone because my doctor said that I was way too young to have fibroids. I would prefer not to have surgery but I fear that leaving it alone might cause further problems. My friend has suggested a holistic doctor but I am not sure what I should do. Have you considered acupuncture or anything to shrink the fibroid? I hope all goes well for you and good luck!

 

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Hi Geezy

I know the NHS is under a lot of pressure these past years but I absolutely hate this attitude SOME doctors have where they just wave you off, like it's nothing to worry about. Long term anaemia is not the one! Aside from the constant bleeding, the hair loss due to anaemia, the days off work, the leaking in public, the anxiety and depression, fibroid linked anaemia affects the entire body, what about all our other organs that are being starved of oxygen???!! To all my fibroid sisters, don't let anyone of these medical professionals try to shod you off!

Thanks for sharing your experience about ESMYA, I definitely want to get on it as quickly as I can, I'm waiting for my follow up appointment. I wish you the best of luck while you take the Zoladex, hope it works well for you x

Re longterm plans marriage and or/children, I know how you feel because that's how I felt a year ago, and to be honest right now at times (only been in my current relationship for a year)but I beg you please don't feel discouraged, you don't know what happiness is waiting for you around the corner, that's what I tell myself, whether my current relationship is successful or not, I will do what it takes to get "my happy".

Thanks a lot Geezy

Queeni x

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Hi Herlin7

I'm so sorry that you are also going through this and that you've felt alone, it's quite an isolating feeling dealing with fibroids especially if you don't have a mates that's going through this. You've joined the right forum, the women here are super supportive as you can see and I only joined a week ago!

Yes I completely agree, I'm trying my best to avoid surgery too. My options given to me by the hysteroscopy surgeon ESMYA/Myomectomy . I tried the no soya, all organic, reduce red meat, milk thistle to detoxify the liver (the liver metabolises eostrogen) and vitex for 3 month, however my bleeding did not improve, it got worse but this could be due to a number of reasons, ie stress, I wasnt treating my anaemia back then as well.

I've heard good things about the castor oil packs on YouTube, that's another avenue, but I believe (don't quote me) you either go fully holistic or take medication, you can't mix both?? Anybody please correct me if i am wrong...

Hope all goes well for you too

Queeni x

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Just thought I'd update you because it seems we're both on the same track.

My fibroid has grown in the past 2 months. It's now about 12cm average an my uterus is 20 weeks Life is getting a little harder to. More pain, more often. Boo.

I'm starting Esmy early Jan. Just waiting to come back from a holiday because I don't want to go thru the first month while on holiday. We'll do a scan like 2.5-3months in and If the treatment doesn't work, then unfortunately we'll be going in for surgery asap afterwards. We both agree that we can't wait any longer. I sense that's exactly what your treatment plan will be too.

Unfortunately it's not covered by our system so i'll be paying full price Boo for Aussies, but maybe in the future it will be.