fibroids and magnetic resonance focussed ultra sound

Body: 

well this is my first ever internet forum write - so hello.

I have a large fibroid - I've had ulta sound examination, and an MRI and also a hysteroscopy.

My Gyno - lovely lady, was a bit miffed as to why I would not want a hysterectomy, and has also declared that I am dangerously close to vaginal prolapse. However, she has recommended me to the Royal Women's Hospital Melbourne to consult about their treatment of fibroids with magnetic resonance focussed ultra sound - MRFUS. I may or may not be eligible.

MR guided Focused Ultrasound Surgery is a non-invasive, outpatient procedure which uses high doses of focused ultrasound waves (HIFU) to destroy uterine fibroids, without affecting any of the other tissues around the fibroid. The procedure is conducted in a magnetic resonance imaging (MRI) scanner which helps the physician "see" inside the body to pinpoint, guide, and continuously monitor the treatment. The focused ultrasound energy is directed at a small volume of the fibroid, raising its temperature high enough to cause thermal ablation (killing of the cells) without impacting other tissues. Pulses of energy are repeated until the entire volume is treated.

Does anyone have any opinions or experience with this? Love to hear from you 61yearoldwholewoman

Hi and welcome, 61,

I have no experience or knowledge of this. I don’t even know how successful it is for kidney stones, for which the technology was developed. My instincts tell me it would be harder to break up a fibroid embedded in muscle fiber than a stone, which can then be passed with the flow of urine. How is the broken-up fibroid re-absorbed? This technology has been around for a long time now, why is it only now being applied to fibroids?

There is a lot of evidence that fibroids result from an inflammatory process. Would it make more sense to adopt a strict anti-inflammatory diet before submitting to such radical treatment? It all sounds well and good that only the fibroid is touched by bombardment of extremely high energy, but I’m not so sure.

I had a large fibroid too (not that big, I realized after the fact), the insisted-upon removal of which was the start of a world of problems. Be careful, my dear.

Christine

Hi 61

If this is a new procedure for fibroids I would be waiting a while until there is an established success rate or otherwise. If you have this treatment you could very well be a guinea pig. Don't know about you, but I would rather leave the guinea pigging to others. As the old rat said to the young rat, "See that blue block of wax over there. It looks like a really yummy baby rat lolly. Would you like to try it?" Said the king to his food taster, who was writhing around on the floor in death throes, "Oh no! There goes another very good food taster. I wouldn't have lit him eat that dish if I knew it was poisoned!" No, I am not suggesting that your gyn would knowingly put your health at risk, but it is always the young rats that die when a new type of bait is laid ... and kings never do their own food tasting.

It sounds like you have a very good relationship with your gyno and that she is very concerned about you and your health. However, what she has said sounds very much to me like the normal fear trip that many gynos use as a matter of course. Yes, there are a lot of different procedures that they can do, and they will fix the problem, but often create other problems along the way. I think you know this, and this is why you are cautious.

Many of us still have all our own unaltered organs because we have enough faith in our own bodies to disregard fear-inducing doctors' advice about 'having surgery/repairs as soon as possible'. We are living proof that doctors are pessimistic beasts, always telling us that the worst will happen, and happen quickly. Regarding POP, I think that is a lie. Other conditions do call for treatment as a matter of urgency. I will listen to doctors about these, but the sky has not fallen, and neither have my pelvic organs, once I learned how to control them.

Once we build up a trusting relationship with a health professional it can kind of blind us to the possibility that some of the things they recommend may not be as good for us as they seem.

I suggest that you follow Christine's suggestions about diet, and also get your body organised into Wholewoman posture, and learn how your body's natural design can improve the discomfort you are feeling from POP symptoms.

Is the fibroid growing or shrinking? How long have you known about it?

Search these forums with the search box, for other topics about fibroids. We have a lot of members who have them, or who have had them.

Louise

Hi 61yearoldwoman and welcome to forum posting

Have you discussed with any of your care providers, or simply investigated on your own, what may be the cause of this fibroid in the first place? that may be a reasonable place to start which would lead to ways of treating / preventing rather than removing organs or ablating them.
Another thing that comes to mind is that perhaps it would be worth your while to explore the info and opinions of non-obgyns (which you are doing, obviously, or you wouldn't be here!) Endocrinologists may have a totally different angle on what to do with fibroids as they are not at all concerned with hysterectomies and the like.
I wonder, what is the actual rate of 'vaginal prolapse' due to fibroids?
60yearoldwoman, what is your experience of carrying this fibroid? Do you experience any prolapse, discomfort, etc?

I didn't even know I had a fibroid till about 2 years ago, an occasional spot of slight bleeding - due to heavy lifting - medicos said that this is not the cause of any bleeding, but on each occasion I have had it I know I have been lifting something far too heavy - it may be due to trauma of the thinning prolapsing vagina wall. Then I realised that the pelvic heaviness I felt was probably this large fibroid.
All the tests are showing up clear, including Pap, Ultra Sound, MRI, Colonoscopy and Hysteroscopy with associated tests there. So I am still curious - no bleeding, but aches and discomfort in pelvic region, especially early mornings. I'm thinking it might be a full colon pressing on things?
The causes? well I think its a loveless marriage that I stayed in for far too long, being a bit overweight till recently, too much sitting at sewing machine, computer and in a car (200km from city meant long drives). I've investigated TCM - a fibroid is identified as 'phlem' - no chi, would move with regular (2-3 times per week) acupuncture, massage, specific exercises and herbs. I'm in the country and haven't got access to this. I have to wait till end of March before I can see the MRFUS specialist in Melbourne, so will keep investigating. Yoga helps, I'm also swimming 1 km two or three times a week - hoping that helps.
don't know this word "non-obgyns" but I do appreciate your suggestions - have you heard of Endocrinologists dealing with fibroids?
Also I'm keen to hear from anyone who has had experience with Magnetic Resinence Focussed Ultrasound removal of fibroids.

... so all the scans are clear, and your gyno doesn't seem to have seen a 'picture' of this fibroid. Is that correct?

Are you are thinking what I am thinking, that you don't have a fibroid at all? That you actually have rectocele?

Or have I misunderstood something?

With POP you can go to three different gynos on three different occasions and come away with a different diagnosis. Examination is most often lying down, when a POP will only make its presence known with the Valsaver Manoeuvre, ie bearing down. A standing exam is the only thing that will demonstrate what is causing your particular POP symptoms. There are self-examination directions in Christine's book, Saving the Whole woman.

What do *you* think it is? You live in this body of yours 24/7. Have faith in your own judgement.

Dr Christiane Northrup is sure that there are family things involved with fibroids, so your story about your loveless marriage stands up. See if you can get a copy of her book, Women's Bodies Womens Wisdom, from your local library. If your library doesn't have it they should be able to get it on interlibrary loan if it is somewhere in a public library in Victoria. Check your State Library website and find out if another library has it, then you can just ask your local library to order it for you. In WA we cannot request books online from other libraries in the State Library system, but the Library Officer can do it for us.

BTW, don't you go blaming yourself for all the things you 'did wrong'. We do things for complex reasons. Now you are moving on. Good on ya.

Louise

Thank you Louise, I am hoping that this conversation is helpful to other women too, I didn't realise how common the fibroid occurrence is. Yes I am truly moving on - moving from this small town up north, to where my daughter lives. Not blaming myself for how things panned out, but for staying there too long, and coming out of it with a constant financial burden, despite now the farm is to be sold for a pretty sum afterall. Well the new wife will enjoy it I guess!
About the fibroid - the Gyno has seen the scans of the fibroid - twice now - different gynos. And I can feel it physically - I'm sure it is fibroid. But what does concern me is that they can't see behind it to the left ovary. I have an app. with a physio within a week, I'm hoping that Christine's books will arrive before then. Like the idea of an Osteopath too - might have a different approach. The pain I am experiencing is more accute now than it was a few months ago. At that time, I suggested to the Gyno, that it was only slight, for fear of being psyched into the big H. But I have been doing a fair bit of lifting, and scrubbing, and shoving - trying to get my place ready for sale.

Still haven't heard from anyone who has had the Magnetic Imaging focussed Ultrasound to kill the fibroid tissue??
What is POP ?

Dear 61,

Today was the first day since long before the holidays that I’ve been able to spend all day working on my new project - A Women’s Yoga.

For years I’ve been calling for a women’s yoga, but it was only in the last few months that I “got” that I was the one who would develop it. I am overweight, sometimes unhappy, and deeply injured in many ways. How could *I* possibly deliver such a gift? The answer finally came that the yoga I will develop will be for real-life women like me who have suffered and survived the slings and arrows (and knives) of the world.

Once I understood that, the yoga has been creating itself. There is deep truth locked inside the female body and it is different from male reality.

One can’t help but wonder about a connection between your (justifiable) anger and a disruption at the two lower energy centers of the body - the earth chakra, associated with survival and stability, and the sacral chakra, related to intimacy and relationship. A post-menopausal fibroid that is increasing in pain and intensity is unusual. The mind-body continuum is seamless, with physical symptoms often resulting from emotional causes. I have come to understand that just sitting and “breathing” anger and trauma in-and-out-in-and-out may be the most viable solution to their dissolving.

The fibroid is part of you. When you use words like “destroy” and “kill”, you are talking about your own self. The beauty of the human body is that it is in constant flux. When things are always changing, opportunity arises. I love Udo Erasmus’s line in our First Aid for Prolapse for Elders dvd, “Health can be defined as having your heart aligned with life, and your body aligned with nature”.

I hope you can find a good herbalist in your area to help you gain the support of local plant allies.

♥ Christine

Pelvic organ prolapse. Sorry for the jargon. I always try to give its full name once to newbies before abbreviating it. Looks like I failed dismally for you.

:-)

Hello to every one Interested in the Treatment at the royal womans melbourne Vic Australia. My name is Miss K and last year 2010 in Feb I went and had this done they got 87% of the fibroids I had 3 of them. I have had appointments after this at the royal womans melbourne as follow ups they said a lot has gone and I have my last scan this Feb and Ill see how much more as gone, I was told I would have to have a hysterectomy and I didnt want this as I have not had kids. now I have the all clear to try, every thing is safe and no complications. Im so happy I did this as one of the fibroids was so big it was pressing on my blader and I had to keep going to the Toilet all the time and I was in a lot of pain. estrogen feeds them and thats how they grow so a lot of woman have them. I was well looked after and so happy with the staff and my life is so much better now 1 year later it is now the 28th Jan 2011. and I will go back in Feb for the last scan. most of it has gone any way so Im not to worried. so good luck for all woman wanting to do this I would go for it as its going to cost 7,000 in the next year or 2 when the triel is over so we are so so lucky to have this opportunity now. not every one is eligible as it really is on how big and what type of fibroid you have so the first MRI will tell them if you can have it then you will get a letter in the mail if you Qualify for it. GOOD LUCK LOVE Miss K

Thank you miss K, for the info on your treatment.

TO THE ADMINISTRATOR OF THIS SITE - Miss K somehow got my email, and sent me information personally - how does this happen,

I thought the anonymity of the forum was secure in this site?

Hi 61,

The box next to your Personal Contact Form is checked. This allows other members of the forums to email you. If you do not wish to be contacted, please go into your account profile and uncheck the box.

Christine

Don't reply to the message. When someone messages you from wholewoman they do not see your email address or anything else about you. It's only after you reply that they 'know' your address. Does that make sense? When you contact someone from this site you simply hit a button that says contact- and type your message- wholewoman delivers the message. When you respond, your email address will be visible to the person who you send the message to. If you want your email address to remain private- simply login to wholewoman and click on the person you would like to contact back- and send a message through WW. That way you can remain anonymous and stay open to receiving personal emails..

Hi MissK

Thanks for solving this mystery for us MissK. It sounds like it has been wonderful for you. Here's hoping there will be no unexpected downsides to it. Looking forward to reading the report on the trial.

I would imagine that women would be able to find the report on the trial and more about the procedure by going to the Royal Women's Hospital, Melbourne website, even if it takes 12 months or so to appear. Now you have told us your story women in other parts of the world will be able to alert their gynos to the procedure, and hopefully save a lot of women from being talked into hysterectomy.

Louise

As I had Treatment at the royal womans last year in 2010 feb my fibroids have gone, I also am Pregnant 4 months and it is now July 2011, Pregnancy makes fibroids grow and I have 3 very small new ones but they say it wont effect the baby, I will have a c- section as I have a new fibroid on the cervix, but this is truly all because I had the MRg Fus treatment at the Melbourne royal womans hospital as I couldnt get pregnant as the fibroids were to big and pushing dints in the uterus, that ended up going back in to shape, They say My fibroids will stop growing soon but I would have the treatment again if it means not having a hysterectomy, as I was told I would need one in 2009, and then this new triel came avalible I have been so so lucky and to get pregnant is just awsome Im 37 years old and just hope if other woman have the same problem as me they will have this treatment, It is the Paulean gandel immaging level one the royal womans you will need a Doc referal to get an appointment, I called up the royal womans to find out what my Doc should write and thats how it all started hope this is helpfull to other woman, sorry about spelling not to good at it. LOve Miss K xxoo with out this treatment I would still being going to the toliet every 2 mins and feeling pain and I wouldnt have got pregnant, it is so worth it and Im so so happy I did it , it is a bit painfull but better than having a hysterectomy ,