No invasive methods or vaginal hysterectomy for fibroids

[Jorgina]

Hello everybody! I am waiting for a open surgery to remove a top intramural 11cm fibroid. I still hope to find a no invasive method or a surgery throughout the vagina. Does anyone here could treat a fibroid in this way? Maybe having a treatment to shrink it before getting your uterus removed? Please let me know.

[wobblybee Administrator Pioneer]

🤔 Is this what you were hoping for..

MRI-guided focused ultrasound (FUS) is a noninvasive treatment option for uterine fibroids that destroys fibroids while preserving the normal uterus. Focused high-frequency, high-energy sound waves are used to target the proteins in fibroids, until they are destroyed.

brighamandwomens.org › ...

[Jorgina in reply to wobblybee]

Have you got it done to you?

[wobblybee Administrator Pioneer in reply to Jorgina]

🙂 No, I haven’t actually had this particular procedure.

[Jorgina in reply to wobblybee]

Did you had any non invasive treatment for any fibroid? Ou maybe you do this procedure to others people? I am just looking for information because I find that the hospital I was being treated neglected me.

[Allimacca]

I had uterine fibroid embolisation carried out 2 weeks ago. This is done by going in through the femoral artery and depositing little grains (each about the size of a grain of sand) to block off the blood supply to the fibroid. This effectively kills it and over the course of the next 9 months (ish) they will shrink to little balls of scar tissue. It wasn’t totally non-invasive but was done under sedation rather than general anaesthetic and I had a small incision in my groin (the crease at the top of my leg) which has now fully healed up. Recovery has been ok, I’ve had some pain but that’s treatable with paracetamol etc.

Are you in the UK? I don’t know how widely available the procedure is on the NHS as my consultant mentioned there are currently only 3 doctors trained/qualified to do it, although more are being trained. If that’s true that might explain why it’s not being spoken about/offered as a means of treatment.

[Jorgina in reply to Allimacca]

Tks for the explanation. St. Mary's hospital London didn't offer it is a possibility. But you can find this treatment in NHS website. I mean, I find really weird that they just don't say the treatments are not available there but still exists because I would have done it privately. My fibroid was 5cm and now is 11... I'd love to know where you did it. I am about to get a second opinion in another Northwick hospital.

[Allimacca in reply to Jorgina]

I’m lucky enough to have private insurance and had mine done at the London Clinic - can’t praise them enough for the treatment and care I received.

Ask your doctor about it and if it’s a possibility for you. The largest of my fibroids is/was 11cm and my doctor wasn’t concerned about it being too large.

[Jorgina in reply to Allimacca]

Wow!!! Could I ask what kind of fibroid was it? I have a top right intramural. I did a MRI on St Mary's hospital via NHS and they said it has the possibility of being shrinking (cus the scanner showed white areas). When I questioned if embolization was available privately on UK my consultant got almost offended...

[Allimacca in reply to Jorgina]

My big one is an exophytic subserosal fibroid. My understanding of the embolisation procedure is if they can identify the blood supply then there shouldn’t be much of a problem putting the grains in to cut off it’s supply. The chap who’s carried it out is an interventional radiologist rather than a surgeon, whether that’s the reason your consultant was funny about it or not who knows!

At the beginning of this the doctors said they were reluctant to go down a surgical route because mine are very vascular and cutting them out would potentially have created problems with internal scar tissue etc for me.

[SraB in reply to Allimacca]

Hi, I'm trying to get a referral for embolisation (instead of hysterectomy) for my fibroids/ enlarged uterus. How are you now? Did it worked?

[Jorgina in reply to SraB]

Nope, I'm stil in the waiting list for an ultrasound...

[Jorgina in reply to Allimacca]

Ps. By the time I went there my consultant mentioned only a open surgery was possible and the pill offer a possibility to keep it stable... I feel that I was being neglected, that they should had gave me more information.

[Weaver281]

Look up Sonata treatment, there are a few hospitals in England with this non surgical treatment. It’s done transvaginally and using radio frequency to kill off the fibroids. I’m waiting to see if I can have it done at Addenbrookes in Cambridge. I have multiple fibroids in my uterus, largest is 9 x 9 x 7cm. Here’s a link to the website - sonatatreatment.com/uk/trea...

[SraB in reply to Weaver281]

I also applied for Sonata here in The Netherlands 🇳🇱 but it is on trial stage so not much hope.. did you get it?

[Weaver281 in reply to SraB]

Hi there, unfortunately my fibroids are too large for the Sonata treatment. I did read that it works best on fibroids less than 5cm and I have at least 3 fibroids which are much larger than that, and some of them are subserosal and I think that could make a difference. I am having an MRI scan in a weeks time and I’ve already discussed a hysterectomy with my gynae consultant, which is what I would like now. She’s fully supporting me on this which is good, so just got to wait to find out when I can have it. I wish you luck with your Sonata request x

[SraB in reply to Weaver281]

Ok. Thanks. So I can be mentally prepared for a no, mine are big as well. I have a bit of hope for embolisation, but I still need the referral and the appointment for MRI to check . After that only hysterectomy remains as option, abdominal gyn said. Yours as well? When it comes to that for me i will ask to keep cervix (no cancer in family) and ovaries i think.

[Weaver281 in reply to SraB]

It may be a no for you too, but at least then you’ll know what your options are. I didn’t want to do the UAE as I feel it may just be a short term fix and they’ll grow back again, I’d like a permanent solution. Yes I’d like to keep cervix and ovaries too. My ovaries are fine, I,m 41 so a while off menopause and don’t want to have to start HRT if I can keep producing my own hormones. I can’t wait for the op, I have severe iron deficiency anaemia because of prolonged heavy bleeds lasting weeks and the pain is really awful at times too. Even with iron tablets, I keep needing blood transfusions which is not sustainable and it’s really affecting my life negatively. Can’t wait to have a hysterectomy so I can get my life back again.

[SraB in reply to Weaver281]

I am 41 as well! I had severe anemia also, last check was just above the limit.. so ok. My motivation to delay hysterectomy if possible is that a have a condition in the colon , which makes it weak , I actually had colon bleeding 10 days because of iron pills, but now we know so its under control. The big surgery has extra risks in that.

[Jorgina in reply to Weaver281]

I don't mind if isn't permanent. I have a skin condition that produces hipertrofic scars all over my body. If I get surgery, I wil hv to get treatment for it too...

[Jorgina in reply to Weaver281]

Sounds good but mine is 11 cm already...