Absolute misery!

South africa... my gynea won't prescribe it. I'm using cannabis oil in hopes that it at least shrinks it.

Are there side effects to ulipristal acetate?

Hi Melanie, Sorry you're in such pain and discomfort, not to mention the stress. I have had multiple fibroids for about 9 years now and was waiiting for menopause to kick in but it never has. The fibroids just grow, and I bleed.

However taking Esmya (ulipristal acetate) has really helped ease the symptoms and shrink the fibroids somewhat. The problem is it is not suitable for long term use, usually for 3 months before surgery. Yes it has side effects, maybe headaches, dizziness to start, possible weight gain, and menopause like symptoms such as hot flushes. When you stop taking it the fibroids grow back again quite quickly.

I started taking it then opted out of surgery ( was only offered total hysterectomy, vertical cut as my womb is so large, and maybe complications due to blood loss). 

I am now in my 3rd course but don't know where to go from here, possibly investigate UFE, which is being discussed a lot here.

I have tried shrinking it naturally. However cutting out meat, sugar and dairy isn't that easy. I feel terrible emotionally and physically. I have wanted kids for so long and now this monster is destroying me and I don't know what to do. They say money can't buy happiness. But if I had money I would get UFE and my life would change for the better. I just feel like crying all the time.

Hi Christine, are you in the UK? Because here the licence for esmya has been extended now. It is no longer just for pre-operative. They can be used for longer term intermittent use. This is only since 2015 so may not have filtered through everywhere. My gynae approved my second course of treatment on it and I can take again I believe after a 2 month gap or maybe even after a longer gap. I am going to see if I get any results after the second set of treatment before deciding. I may even try some complimentary therapy next myself.  Best wishes

 

Hi, no I'm in Spain. I have been able to obtain Esmya here on my original prescription ( the private ones are not dated here, you just use the same one over and over, I do it for blood pressure tabs too), and am on my 3rd course, but I have to pay for them and they are really expensive (£150 pm), so it doesn't seem a good long term option! My gynae only wants me to go for surgery now as she believes it's the best option, so I haven't been back to see her for months.

Hi Melanie, there can be side effects but these are generally very mild. Of course everyone is different. They are generally headaches and a bit of dizziness when first start. Also some tiredness. I can not vouch for everyone of course. For me I would say the side effects are worth it if there is going to be some reduction in the size of the fibroids and hence a reduction in symptoms. I take the tablet late at night as it sort of makes you tired and then you can go to bed and just wake up OK in the morning and carry on with your day.      I am a few weeks into my second course of treatment with it. I took for 3 months and had a gap of two months and now thought would give it another go. I dont know if mine have reduced in size as have many smaller ones (plus one of 5.5cm subserosal). It stops your periods whilst on them so that is a good thing if you suffer heavy ones and are prone to anaemia as a result. I am looking for a reduction in pelvic pain. Not yet achieved for me. It may be because when fibroids are breaking down that can cause discomfort as well so I just have to be patient and give it time and hope. Hope is a good thing we all must have that.      

Thank you shell69386.

yes I know what you mean, I thought about the dieting option but it's so severe and the people who say they have managed to shrink them through diet also rely heavily on supplements which I can't easily get.

is Esmya an option for you though on your medical aid? I have medical insurance but it excludes pre- existing conditions, so fibroid treatment and even the hysterectomy I'd have to pay for myself.

 

Hey christine.i think best is just get an operation.

Taking esmya and then stopping will not be if any help.

It took me lots of guts to take the treatment and operation later and now i see the results

She said her insurance wouldn't pay for surgery

Yes that's right I would have to pay, but it's not just that, it's also the language barrier ( I speak some Spanish but not enough to be comfortable with medical conversation). And the fear of complications due to the large fibroids and having to have a vertical cut,  with a long time recovering. Oh and also the loss of sexual pleasure if I have a total hysterectomy.

Hi Christine.  I was told i needed a hysterectomy but i refused it(that was in the Caribbean).  Have had a second and third opinion and have just had an open myomectomy 5 weeks ago.  I had to have a vertical incision due to the size of my uterus.  Due to extensive blood loss he was only able to take out the 4 largest fibroids but after some very painful days when i tried to do too much i am doing well now i feel.  Your body tells you when you are doing too much so if you listen your pain quickly settles.  I am 46.  Cant wait to start driving again haha.

I wish you well in your recovery, let us know how it goes.