URGENT - MR Guided focused ultrasound fibroid treatment

[HappyCapybara]

Has anyone had this to reduce the size of their fibroids?

I have an app this week to discuss treatment options. I do not want a coil fitted and this treatment has been offered as an alternative.

Any info would be welcome. I think its performed at St Mary's Hospital, Paddington. I have no experience of St Mary's and would be interested in opinions + would like to know how painful it was, how effective the treatment was.

TIA

[oldpedant]

How big are your fibroids? Would keyhole surgery to remove them completely be an option? I had this procedure a year ago. I was back to normal within three weeks and only had to spend one night in hospital.

The only non-surgical option I was aware of at the time was hormone therapy to shrink them, which induces temporary menopause as far as I understand, so if there's a new non-surgical treatment, that's wonderful and very interesting.

Sorry for replying when I haven't actually had this treatment, but I didn't want your post to go unanswered, and am always keen to converse with fellow fibroid sufferers.

[HappyCapybara]

old thank you for your Post.

My fibroids are many but the largest are around 9cm by 6cm so not enormous but significant I guess.

I was told about the surgical option and was advised that I'd have to take HRT for a few months beforehand to shrink them and then once they were smaller, have an op to remove them.

I was advised that the recovery time would be quite long and I'd require 6 weeks off work so I'm glad to read that you were back to normal in half that amount of time.

I'm grateful for your info as any experiences are helping me to make up my mind about what to do.

[oldpedant]

It sounds like the fibroids are too big to be removed through keyhole surgery. A more invasive myomectomy op is the only option when they get that big.

I had two myomectomies before I had the keyhole surgery. (Unfortunately, my fibroids are stubborn buggers and tend to grow back). Those surgeries also weren't at all bad; three nights in hospital, and I was completely fine before the six weeks was up and went back to work in three weeks. They do tell you to take six weeks off work, but I think they have to err on the side of caution. If you're otherwise fit and well and your job doesn't involve manual labour you can be back much faster.

I wanted to avoid the HRT route because I'm not young (early 40s now, it all started for me in my mid-thirties) and was trying to conceive at the time. If you are younger, or have completed your family, you have no worries about that.

I do empathise, fibroids are awful, but not talked about that much because they're not life-threatening. But you'll feel much better once you've made the decision to take a specific course of action that will help you.

[HappyCapybara]

Yes, I think you're right re the size of my fibroids ie the options available are limited.

The hospital seem to be really pushing the Mirena Coil. I simply don't feel happy having one. Two different 'consultants' advised me that not only was it the only option (this was completely untrue) but that there were definitely no side effects associated with it! Amazing!!

I may end up having an op' but having only just started a new job, I am a little uneasy about taking 3 weeks + off. I guess that's one of the reasons I was considering the MR ultrasound treatment.

I agree with you, fibroids are not talked about enough. I'm in so much pain and have had so many related issues (as I'm sure you have) but really didn't know that much about them until the last couple of years.

[oldpedant]

Hmmm, the Mirena coil as the only option sounds dodgy in the extreme to me too...

I think with fibroids it's key to find a consultant who has a real interest in the issue and takes it seriously. Which is difficult, precisely because fibroids aren't talked about enough and few doctors specialise in them.

And I hear you on the new job issue, taking time off is never easy, even when you're well established.

I found a website called geekwithfibroids (I can't do links, just google that and you'll find it) to be very helpful when I was trying to decide on my best option. There's lots of helpful and sensible discussion, and I imagine someone there will have had the ultrasound treatment you're thinking about.

I'm so sorry you're in pain, I know it can feel almost unbearable. All I can do is send you good thoughts, and I really am. x

[HappyCapybara]

Thank you, I appreciate your kind words. It's lovely to be able to learn from/chat to someone else who really appreciates what it's like.

I will have a look at the website, I haven't come across it before I don't think.

Thanks again,
x

[ItchyTits]

Hi Happy

I've had loads of uterine surgery, and had fibroids for years causing incredibly painful periods. After finding an expert in keyhole surgery I felt far more confident about going under the knife. As it turned out, I had other problems too (one of the 'fibroids' was an adenoymyoma) and had to be opened up, resulting in a 5 hour surgical procedure! However, this story has a happy ending as I ended up getting pregnant - twice - following this operation, and my periods were immediately less painful.

So, if you are thinking of a surgical route, I would find a surgeon you feel you can trust. As my DP loves to say, a lesser doctor might have just snipped out the lot! (Then again, he was waiting for 5 hours with no updates and was terrified I'd wake up without a womb).

Remember that you are (still) entitled to have surgery on the NHS at a hospital of your choice.

All the best with your decision. (I would happily recommend my doctor)

[HappyCapybara]

Itchy thank you so much for posting.

A 5hr op sounds awful but I'm pleased it all worked out well in the end.

I'm glad you reinforced the point regarding using a hospital of my choice. Whilst I am aware of that, I had forgotten and whilst I don't normally get flustered when seeing Consultants it is easy to feel as if you're being bombarded with info and forget your basic rights.

I'm hoping that when I do see the Consultant things will be a bit clearer ie to date no one has actually been able to advise me whether or not one of the options/solutions is better than another based on my specific circs ie size of fibroids/location etc.

Fingers crossed it'll all become clearer .

Bless you for your input and I am pleased things worked out for you/your family.

[GlitterKitty]

Happy- can I ask you for an update on this?

[Rubyroo12]

I have had Mr guided focussed ultrasound treatment for fibroids at st marys in London. The treatment took approx 4 hours. It was painful at times - felt like bad period pains, also my stomach got quite hot. I did feel feverish afterwards and quite sore from lying still in an MRI scanner. I do feel this option was better than the options offered to me?

[rosieposy88]

Hello! Has anyone had this done and was it successful?
I have on 10 cm intramural fibroid that is giving me problems with my bladder and bowels. I really want it gone but not at the risk of losing my womb. However, natural methods don't seem to be working. Any advice/ personal stories would be really appreciated.
Rx

[funkylady211]

Hi - I too would like to know if there any updates. I am currently waiting for my treatment options and am interested in the MR Guided focused ultrasound fibroid treatment, however it is not being performed at any hospitals near me. I am happy to travel to have it done if this is possible on the NHS.

Any updates would be great :) esp. in connection with St.Marys or any other hospitals where MRgFUS is performed.