Esmya followed by UAE for multiple fibroids

I am a 51 year old woman, no children, and have suffered a multitude of gynaecological problems all my life, however, my periods are still regular and no sign of menopause yet.  Three weeks ago I was prescribed with Esmya, following a very heavy bleeding episode, for which the consultant talked about hysterectomy and endometrial ablation.  An ultrasound scan showed a minimum of 8 fibroids between 2 and 6cm, together with an unspecified number of smaller ones.  I then spent a week investigating my options.  This week I went to see a well-known Interventional Radiologist.  The results of an MRI scan show between 30-40 fibroids and adenomyosis.  He has booked me for UAE in September.  I have had myomectomies and endometriosis, there are many adhesions, and a hysterectomy could be risky.  He has told me to do the 3 months of Esmya, which should make my life more comfortable until then.    Does anybody here have experience with Esmya followed by UAE?  Help and advice much appreciated.   I will also be reporting how I get on with it.   

I am trying to reply on my phone, but the website polyps are crap. I have had both and not without problems but much better than hysterectomy. Will write more later.

Thank you very much for your reply, and very much look forward to hearing further smile

Hi, just curious - has your consultant discussed gnrh with you? I wonder as that is what I am having which seem to have the same effect, but itis injections

Hi Sandy67, I have had Zoladex and got bad side effects, although I must admit this was many years ago.  I wasn't keen in having the Zoladex again, that is why the Consultant prescribed me with Esmya as an alternative.  I had never heard of Esmya but trial results sound encouraging.  

Hi, thank you. What sde effects did you have? I have been given no info on this just told to turn up in two weeks to start injections. I dont even know what zoladex is butI am guessing this may be what I am given then? No one has actually discussed this with me, doc just said it very matter of fact like after my laparoscopy and I was still not quite there after the anaesthetic. Gosh who would choose to be a woman eh?! I just dont know what to do! I just wanna get on wth my life but pain keeps stopping me in my tracks and I am so so tired I never want to get out of bed. I am taking antidepressants too as I get very down and just hide from everything in my bed. Kids are getting down now too cos I am just doing nothing and just cant shake it off, mixture of pain and depression

Oh dear, poor you sad  I got very bad hot flashes, and anxiety attacks, but that was many years ago, and things may have changed.  The doctor said at the time, it was like experimenting the menopause (I was 29 at the time).  Sometimes doctors are not very considered or sympathetic with our symptoms.  Have you tried to get a second opinion or speak to your GP?

No, havent spoken to ayone else - sick of the sight of docs now tbh but I guess I will just try these and see how it goes.

thanks for replies and good luck with yours! Xx

Lots of good luck to you too xx

I had Esmya last year for 6 months (2 3 month courses separated by a month).  Pre-Esmya, my fibroids and uterus were the equivalent of a 6 month pregnancy.  During the first 3 months of Esmya they reduced by about 25%.  There was no change in the 2nd 3 months.  I had very little menstrual bleeding during the 6 months on Esmya, so caught up on my iron levels, which was good.  I felt very tired during the treatment.  Had UAE in April of this year.  Had 2 weeks off work.  Recovered well and have had a few heavy periods since.  The fibroids have definitely reduced in size (but seem to fluctuate a bit).  From my reading, the reduction should continue over the next year.  A lot of my symptoms have improved eg urinary frequency and constipation. 

I am so glad to read your comments. That is all very positive, despite perhaps having to go through a difficult patch.  But I am sure that we are all used to that.  It already sounds like a major improvement, and it is very encouraging to hear that.  Thanks a lot for that.  

Hi Peruvian Lily, how long was between your last Esmya treatment and UAE?  I am asking because I am supposed to finish the first 3 months just the day before the operation is scheduled.

I'm also starting to get a bit anxious about the UAE now, having read some horrid stories in this forum, about post-op pain.  Was your pain manageable? 

I stopped Esmya at the end of October and had UAE in April. The fibroids grew in the interim so the way you are doing it is better.

The UAE itself did not hurt at all. I had some oral liquid oramorph pre-procedure and 10mg intravenously during the procedure. In recovery the cramping started and I had a further oral oramorph. By then I was on a patient controlled pump and you can give yourself 1 mg every 5 minutes if needed. I probably did for the first 4 hours. After that if I felt a twinge I gave myself some straight away. The pump came down next morning and I went home. For the following week at home I had paracetamol, iibuprofen and Tramadol. I took paracetamol an ibuprofen regularly for a week. Tramadol, I was given enough to take 2 3 times a day for 5 days. I just needed 1 three times a day for the first 4 days, but probably could have survived without. It was definitely not the worst pain I have ever had and was much easier than I thought it would be. Also important to make sure you are not constipated.

Again, that sounds encouraging.  Can I ask what type and size, and number of fibroids did  you have?  

 

1 mucosal, 4 cm in max diameter, 1 subserosal 5 cm in max diameter, 3 intramural ( together about 15 cm in max diameter). Uterus was 24 weeks before Esmya, went down to about 18 after Esmya and went back to about 20 to 22 before UAE.

Biggest intramural was 10 cm prior to Esmya.

And you will have a scan soon, and I hope with good results.  Please keep me posted. My ones are 1 submucosal 1cm, some other subsesoral and mostly intramural, largest 5 cm, and a lot of small ones. The report says between 30 and 40, and it was weird to see the pictures.  The IR is quite confident that UAE is a good option for multiple fibroids.  

You mentioned you were in a clinical trial, is that the Femme?  i was looking at trials, but this is now closed.  You should get much better follow ups if you are.

I don't think it was called Femme. Followup is nurse calling me every now and again to ask quality of life questions.

Ah ok.  I feel as I I have read the internet.  Maybe I will just relax a bit, and see how things go.  It is not a fast process.  But your posts have helped me a lot to feel more confident about it, so thanks again.