Esmya prescribed today

Women's health
1

Hi

My consultant has prescribed Esmya today and I had to give the prescription to my GP so waiting to see if she agrees it tomorrow.  In fact I am sure she will but has anyone had issues with their GP not agreeing?

Also I noticed that most of the women in this forum are taking Esmya in preparation for a hysterectomy.  Is there anyone esle like me who does not want a hysterectomy and is just taking Esmya to shrink fibroids only?  Well I am sure my GP will agree to process the prescription.  I will find out tomorrow.  Fingers crossed

2

Hi there!

I took Esmya for 3 months ahead of my hysterectomy.  Unfortunately it only shrunk my fibroid 1cm to 11cm and i still had to have an abdominal cut.

My gynaecologist said  that Esmya can only be used to shrink fibroid ahead of hysterectomy, as once you stop taking Esmya it just start to grow again. 

Hope you get your prescription ok and all goes well for you.

X

3

Hi I took Esmya for 3 months prior to having an open myomectomy. It shrunk my 15cm fibroid by 2cm. Was told couldn't be on it long term as creates menopausal symptoms? 

4

Hi Acquia, good luck with the Esmya I'm sure GP will prescribe for you. I have been on it 14 days and feel really tired but not too bad in terms of other symptoms. It is being used as a pre - operation medication to shrink fibroids and give better choice of which operation with less blood loss. If near menopause I think some Dr 's are hoping it will be licensed for long term use in near future to keep people going to menopause. When treatment stops they will grow back after 6 months or so. At present only 2 courses of 3 months allowed with break of 1 month in between.

5

Hi Acquia, good luck with Esmya, I can't imagine why your GP wouldn't allow it as it's your gynaecologist consultant that's the expert.  My consultant had to write the initial prescription and wrote a letter to my GP updating on my situation and then my GP wrote my next prescription.... easy peasy!

I hope you have the success I've had.  I'm in week 10 and at about week 7 my fibroids shrank an obvious amount and now I can't feel them at all, which is saying something believe me. They stretched my womb up to my belly button and could be clearly felt, like a ridge or a step (size womb 20 weeks/10 fibroids), now my abdomen is soft and squidgy and I've joined the gym and swimming twice per week as 1) I've got energy, 2) not in pain, 3) feeling well and want to get fitter and healthier.

I had my check up 2 weeks ago and I almost cried with triumph when my consultant said I may not 'need' my womb removed and if esmya helps my poorly ovary (endometriosis and enlarged) then I may not have a hysterectomy at all. (Aalthough not licensed for endometriosis esmya is potentially going to help with that too - my consultant is an endo expert, that's his field and this is what he hopes for us ladies). 

Right from the start I was adamant, no hysterectomy! however, over time (2 years) I came round to accepting this could be the best thing, sick of being sick.  This change of heart happened in about 3rd week of esmya - I guess an acceptance thing.  At the least esmya will make any operation easier (whether that's unsticking an ovary, removing it, and/or removing my womb too) by shrinking the fibroids.  So once coming round to acceptance and now this significant change I may not need to have a big op, or if I do it would be keyhole .....  

I asked for another 3 months prescription and he said no, wait, let my 3 month course finish (2 weeks to go), another scan and then review.  Save another 3 month if I need it later.  I'm sure he said the effects so far are long lasting (although it's a new drug for the UK but he's the expert so if that's what he knows, fair enough) and as you will know fibroids can grow back - but at least now I know what to look at for if that does ever happen.

I've had no side effects or if I have they'e been nothing, compared to the pain I used to have, the improvements have been life-changing. No exhaustion and constant tiredness - makes a diffence to me as I'm a therapist, working all times of day/evening and lifting a couch and things about, single, running my own business all on my own smile  So yes, life-changing!

I'm a positive person and right from the start have stuck to what I know is true for me despite family, friends advice saying otherwise.  I've had to get strong and speak my mind, being assertive with GP and consultant.  I've asked awkward questions because it's my body and I have to understand everything so I can make the right decisions.  My consultant has changed his tune with me, very positive and upbeat now and said that he is here for advice, he provides the tools whatever route I choose, it's my body and only I can make such major decisions - I couldn't ask for more than that.

This has turned into a bit of an essay!  This journey has been a long and deep one and has made me find my courage, wisdom and belief of what is best for me.  This journey isn't over yet, I don't know which way it'll go, but Esmya has been brilliant for me and from what I read it varies from woman to woman make anything from no reduction to complete disappearance and no operation required at all - which is where I hope I'm heading and my consultant is hopeful of that too.

I want to find out from woman that have taken Esmya, not had a hysterectomy, what has been their long-term experience.

So, here's hoping you have great success Acquia - I'd love to hear how you get on.

smile

PS.  My consultant confirmed that the shrinkage I felt from the top/outside where I can feel by pushing into my tummy would be the same all the way round ... I wondered if they'd have just disappeared from one side.

6

Hello Acquia,

I had several large fibroids and I was very upset when the doctor suggested hysterectomy. The side effects are severe and lifelong (and humiliating to a woman) and it is very obvious  that doctors avoid discussing them. I changed doctor.

I was on a 3 months course with Esmya last summer. The fibroids shrunk 10-15% but regrowth quite fast and became even larger, very much due to neglience of my doctor, so I chose a new doctor again.

In April I started a new course, this time for 5 months. The fibroids shrunk by 50%. Now I have to be off Esmya for two months even if they would start to grow again. I will not hesistate to take them again. Esmya is fantastic - effective and no side effect for me. The other way around, I felt better than I felt for a very long time. Good luck to you! 

7

Hi Acquia 

This time last year I was in your position and my GP said no to funding Esmya as it was a private prescription (not sure how it is if NHS prescribed)   

I offered to share the cost and they agreed to that with me paying for 1 month and the surgery paying for 2. It was a 3 month course prior to Hystorectomy. The drug was not licensed for more than 3 month course. My fibroid shrank by a small amount 5% only but consultant still happy to perform laparoscopic Hystorectomy. Had this done in Feb this year. Best thing for my circumstances and was back at work/driving etc after 4 weeks, skiing at 8 weeks. Just saying in case this is a worry of yours.  

8

Hi KK

I'm glad your results from esmya were good. Mine were not so good only shrinking my 12cm fibroid by 1 cm. So I am now 3 weeks post abdominal hysto and feeling good.

I don't necessarily agree with you that hysterectomy side effects are humiliating. Bleeding so heavy that it goes though your clothes, being doubled over in in pain etc are far more humiliating in my opinion.

I think when we've been taking esmya for a while and had little or no periods, its really easy to forget just how rubbish the symptoms can be.

I did lots of research before committing myself to hysterectomy and don't regret my choice at all. I'm lucky enough to have two lovely boys and as far as I'm concerned my uterus has done its job. For me it was time to move and and start feeling well again.

9

Hello,

It is great that you are pleased with your operation. Everyone should make their own choice.

My choice will be to avoid it. I was terrified when I read how the operation is carried through and about the lifelong and severe side effects, which will affect 50-80% (depending of which report you read) of the women, mostly after a few years. Numerous reports are available on internet.

Side effects may not be a promise, but I am not prepared to take the risk looking at the mentioned numbers. The side effects seem quite logical even to someone without a medical exam.

There may be cases when it cannot be avoided since you would otherwise spend all your time in a hospital with heavy bleeding. Still, in many cases there are alternatives and I stick to them. To me it is important to keep my female body intact in all aspects even though I will not have more children. My doctor told me that many older women have said to her that they are so happy that they persisted.

Also, do not listen to just one doctor. Doctors have different agendas and surgeons prefer surgery. Doctors should listen to the patient. Such social skills should be a prerequisite for a medical degree, but it is not the case unfortunately.

10

how do you guys get your diagnosis.

i'm so frustrated after 3 years in bad pain.

i'm 66 and live in spain.

i've had so many tests in all departments and still the specialists tell me fibroids are normal ,ignoring my pain.

we are all led to believe that eostrogen makes em grow and shrink but why at my age have they reared up.

cos thats the only thing showing up on test results.oh and an irregular ligament.

i always want to pi but not much comes.

my poo is like pencil thin and i make sure i go otherwise my stomach is like 6 months pregers.

sex is soo painful and my partner is 10 years younger than me so i'm getting worried.

on 20th of this month i see my 7th gynno.

its not easy using a translator and i come out of  appointments a bag of nerves.

i can speak the lingo but can never understand whats coming back as they speak rapido.

it seems to me everything down there is squished together so whether its a bit of a prolapse of something or a heavy calcified fibroid i dont know.

i've been researching so much but my ideas fall on deaf ears.

i took myself for a MRI and the written result said fibroids.

the 'state gynnos'' arent given the time or inclination to read the CD that came with this report.

so i looked at this CD on one laptop and compared it to a normal female pelvis on another laptop.

i was horrified at my image .

i am a bit of a socialist and fear private health doctors as have had bad experiences of them taking my money and not coming up with anything.

if everyone is yawning now i dont blame you.

i've become a bit of a pain in the a....

so i can pray my next appointment is fruitful or smash my piggy bank and flash the cash and say''take all my lady parts away'' i dont need the hassle.

what do ya gals think?

11

Diagnosis was easy part. Symptoms and ultrasound scan. MRI should be more helpful than ultrasound. Sounds like lots of pressure symptoms re: bowels, bladder. Can't you get to see consultant in England? The myth that fibroids shrink after menopause is not strictly true, they may stop growing but they will not go away. Agree with your sentiments get the bits causing problem out and get on with life. Makes no difference if lady bits or not solve the problem. Good Luck.

12

i agree with everything you said.but sometimes its difficult for younger women with small children to challenge these doctors as they think their word is gospel and cant see any alternative.

i had my menopause at age 42 and was bleeding heavily and in much pain.

i was given an hysterectomy appointment for 4 months later but by then i was ok. so no hysterectomy for me.

however i was going through the usual menopausal symptoms and although i'd read that i couldnt takeHRT cos i had fibroids and they would grow, i saw a tv chat programme talking about synthetic HRT that didnt make fibroids grow.

i took them for 12 years and they were wonderful.

made me randy also.

then 5 years ago  i got pain and bloating and had a polyps removed from my cervix i think.

post op the surgeon told me, no more HRT.

i was gutted but stupidly stopped them instantainiously.

i got menopause x 2

now i am 66 and have pelvic pain and digestive symptoms for some time.

tests results show fibroids only.

havent had diagnosis after 3 years suffering.

for the past week i have been doing pelvic floor exercises and feel so much better.

to everyone suffering from 'womens' problems' give it a go.

maybe you can keep hold of your lady parts if you get relief.nothing to lose!

 

13

Hi KK

I'll be finishing my esmya course in 2 weeks time and am wondering what you meant by your dr's negligence that your fibroids regrew fast and were larger too?  It sounds like there's something your dr either did or didn't do that made it happen.

I'm asking in case the same were to happen to me.

How are you now as you've stopped your 5 month course?

Thanks smile

14

Hello Victoria,

My doctor did not cause the regrowth, but she certainly contributed to the fact that the regrowth went so far since she did not bother to send me for a thorough ultra scan until I more or less forced her to after six months. I could have been put on my second Esmya course much sooner. Now - with my new doctor - I will be checked after two months off Esmya. 

After 5 months on Esmya I could hardly feel or see any of my fibroids. Great feeling! One month has passed since then and I just had my first period after finishing the treatment. It was very light. There seem to be some small regrowth and if so there will be a third course of Esmya for me. I hope that they will finally give in and stay small.