Uterine fibroids

I think I would be asking for a second opinion, which is what I did.

I was told hysterectomy was my only choice 18 months ago, and I sought a second opinion, my situation

was different, I was told mine was 50% projected into muscle and wall of uterus (sum mucousal), and 50% inside, it turns out after myomectomy, it is 90% in my uterus.

The consultant has probably scared you with his comments too, Esmya did give me short term relief, I

dont believe it is a long term solution, due to mine being now 7x7x5 post op so it is large. What have

you got too loose.

I am currently waiting for the arterial embolisation, if this is not successful I will be looking at a

hysterectomy, I know though personally I have tried everything possible before this option.

I felt the need to comment as I am at home 5 days after having a laprcopic hystorectomy ( tubes removed but kept ovaries). Oct 2013 fibroids were found after ultrasound ( flooding took me to gp) and the MRI scan showed multi (more than 2 gets that description) intramural fibroids. I was booked in to have artery embolisation the following week. I took myself off to an excellent gyne consultant and said " do I have a choice and is embolisation right for me". After a lengthy chat we decided the most sensible option would be a hystorectomy. My research backed up by her expertise led to that decision. I felt embolisation was just delaying the inevitable and without actually sayings so I think she agreed.

I started a 3 month course of esmya to shrink the fibroid ready for keyhole surgery. I negioated with the gp surgery to share the cost as they are v expensive.

10 period free weeks later I went to see if the fibroids had shrunk and for me they had but not much. Now 10x10x8cm. I was assured that they would manage keyhole.

After 3 hour surgery on sat am I was told it had all gone well and my entire uterus was fibroidal and was starting to compromise other organs so a necessary op. I have come home with catheter as I had an adhesion between bladder and uterus so needs extra time to heal. Not uncommon.

I am feeling surprisingly well and pain free on just paracetamol.

I am writing all this as from what you say about this 'enveloping' and the fact the consult had not even heard of the term I'm wondering if they actually mean your uterus is fibroidal.

As Val said a second opinion is a good idea and remember its your body and it deserves the best treatment whatever that may be.

Best to you. Alex

Thanks for your advice and sharing your stories.

I researched very carefully when choosing the consultant (luckily I have private healthcare through work) and due to his experience and other reviews I chose him but definitely understand what you mean about a second opinion. He was very much convinced that it would have to be a hysterectomy due to the enveloping of the whole uterus. He did say however that after 3 months on esmya the decision would be based on the findings. He mentioned that he may even want me to carry on with esmya after the 3 months and up to 6 months depending on how it worked for me. This also is a bit of a worry as haven't found anybody else that has been on these tablets for more than 3 months.

I definitely have a problem with my bowel and bladder and what feels like a constant gurgling upper stomach which makes me feel quite sickly so am sure it is compressing my organs but hopefully fingers crossed I will get sorted out soon!

Started esmya today as first day of very painful period so hoping it works. Just a quick question - is it still ok to take paracetamol and ibroprofen for the painful cramps whilst taking esmya. There's nothing to say you can't but just wondered if anyone else did.

Good luck to you both

I did take paracetamol while taking Esmya as nothing to indicate otherwise. Im sure you know that Esmya is a relatively new drug and has not been licensed for more than 3 months but many docs are allowing patients to stay on it for 6. My consultant did say to me when she prescribed them that the effects of Esmya make embolisation difficult as they shrink the arteries too but I had made up my mind by then so not an issue.

I had a lot of upper digestive niggles beforehand but now apart from post op wind pain they seem to have vanished.

I used the women's health department of my healthcare company for advice too, they were very good as they work with people like us daily. Check out your policy for a Helpline No.

Knowing you are in good hands makes all the difference if you go for the op.

Ask anything if you think I can help.

Sleep well!

Thanks for info, I might just check out the women's health number. I think speaking to people like yourself though really helps more than anything and makes you realise that you're not alone.

Thank you!