Patient Forum

READ ABOUT OTHERS

This page is intended for you to share
in other patient’s questions & answers,
and to read their healing stories, and testimonials
as well as the testimonials of health-care providers. 

• TESTIMONIALS
• QUESTIONS & ANSWERS
• PATIENT STORIES
  
  
• TO SHARE YOUR OWN INFORMATION OR ASK QUESTIONS CLICK HERE
  Please read through the appropriate chapters and their FAQ section,
  as well as the answers below, before you post your own question.
  
  
  

Testimonials

Christine – Northern NSW, Australia
Thank you for the generosity with which you are sharing this important information on your website.

Lakshmi – Sydney, Australia
Thanks for all your Email replies & the beautiful / useful site that you've created. Keep well.

Michael Sax – Chiropractor – Murwillumbah NSW, Australia
I feel that these are important issues – broadly speaking; the need for women to obtain objective info upon which to make their health care choices in what I perceive to be a largely patriarchal system, which often – perhaps unwittingly, or subconsciously – frightens women into making choices which ultimately suit the provider . . . not the patient.  Good work, and keep at it!

Maureen Calear – Hormone Consultant & Herbalist – Lismore NSW, Australia
Congratulations on the website; I know how long you have been working on this – all your efforts have been really worthwhile.  The site looks very attractive and professional and user-friendly.

Anja – Renkum, The Netherlands
Great of you to sympathize so much with me. I’m now engrossed in everything you wrote. My English is not so terrific but my husband’s is very good. I say, your website looks tremendously well-cared for!!
I’m very glad I learned about fibroid embolisation. My GP was totally opposed to a hysterectomy for me, as I have ME – and came up with all sorts of not very useful alternatives. When I told my gynaecologist about embolisation, he said, “go for it.”
Dutch: Reuze van je, dat je zo begaan bent met mij. Ik ben me nu in alles wat je geschreven hebt aan het verdiepen. Mijn engels is niet zo geweldig maar het engels van mijn man is daarentegen wel heel goed. Overigens ziet je website er wel geweldig verzorgd uit zeg!!
Ik ben heel blij dat ik over fibroid embolisatie hoorde. Mijn huisarts was volkomen ertegen dat ik een hysterectomy zou ondergaan vanwege mijn ME, en stelde allerlei niet echt bruikbare alternatieven voor. Toen ik mijn gynecoloog vertelde over embolisatie zei hij,”ga ervoor.”



TO SHARE YOUR OWN TESTIMONIAL CLICK HERE

QUESTIONS & ANSWERS

This section contains up-to-date questions & answers.
Additionally, some of the treatment chapters have their own list of Frequently Asked Questions.

HAVING PROBLEMS TO DOWNLOAD INFORMATION :

Q
I have just read the article about UFE and your website in ‘Good Medicine’ dated May 2004, but due to my lack of computer knowledge I am unable to download the list of Interventional Radiologists.
I am keen to have some information about this procedure as all other avenues and surgical procedures have been painful, counter productive and unsuccessful to date. 

A
Thank you for your enquiry. I attach the article on UFE (in Email). It contains the names of Interventional Radiologists with a special interest in Uterine Fibroid Embolisation.
You can read about all the ins and outs and it will help you to prepare for a consultation.

Should you need help with the other chapters you want to read, let me know and I’ll be happy to Email them to you.


GETTING A REFERRAL :

Q
I managed to get a referral to the UFE guy in Brisbane who I went and saw yesterday. He wants me to see a gyno first just to confirm there is no other reason for the heavy bleeding etc.

A
Ideally, a gynaecologist that is open to this excellent alternative to hysterectomy can take care of the necessary initial check up and ultrasound or MRI as well as proper follow-up care. Be cautious, however, that still many gynaecologists might want to sway you to his/her preferred treatment.
If you haven’t already done so, read chapter A1 and A2 on the website for support.
My own experience: in 2000, the last gynaecologist I consulted was in Brisbane, and I asked him about embolisation. He was not too keen on UFE at the time, said it was dangerous (would you believe) and not done anywhere in Brisbane... He seemed to be good at laparoscopic hysterectomy, but only on small uteri... and advised a full abdominal hysterectomy for me. It turned out his information was outdated at the very least, and I’m glad I didn’t follow his advice.


COST ASPECT & CHOICE OF DOCTOR :

Q
The interventional radiologist I consulted in Brisbane was telling me that the government doesn’t cover the cost so the patient has to pay for the tube of particles and the catheter, but he himself doesn’t charge a fee.
He said I may be able to get it done for free at the Gold Coast Hospital but I didn’t see anything about them in your article.

A
In most hospitals the procedure will be free of charge to the patient.
I know that in some clinics in America the treatment isn’t completely free either. Personally, I feel it should be – as hysterectomy will cost the community much more. In Brisbane it is probably hospital regulations that are binding. So far, patients from Sydney have not complained about this. In Melbourne (the Alfred hospital) where I had my procedure, all cost is covered by Medicare – although they do encourage patients to use private health fund if you have it, which will go towards further research.
If it’s a high amount, my suggestion would be to weigh the cost and compare it with flying to Melbourne. You’ll need to include some overnight accommodation as well, for one or two nights – you can ask to stay in the hospital’s medi-hotel for one night after the procedure, which makes it possible to go alone (if you feel reasonably fit to travel alone, that is). 
Alternatively, interview the other IR that doesn’t require out of pocket costs, and ask to speak to patients; to get an impression of the level of experience with this procedure.
By the way, Gyns charge extra as well if you want to have them do the surgery themselves, instead of their apprentice.

As mentioned in the embolisation chapter, not all names of IRs with an interest in UFE are known to me, and the Interventional Radiology Society of Australasia (IRSA) is not allowed by law to just give them out (it’s enough to make you scream if you urgently need help).  So for all I know there might be excellent physicians out there that are not on my list (yet). The list is still expanding, but for now we can only go by personal experiences that patients are sending me.
[So please inform this editor, anyone who finds out more information to be put on the website]

Patient’s Reaction
I have decided to stick with the IR in Brisbane, even though there is a doctor at the Mater Hospital who can do the whole thing for free, but he is still in the training stage so I would rather go to someone fully experienced. I absolutely hate flying so I would be too stressed to get on a plane and then have an operation.
I had to pay $350 for the hospital bed as I don’t have top cover and I received a bill of $1554- for the x-rays used during the procedure – I have sent that off to Medicare so I'm not sure what the gap is. The catheter thing costs $600 and the granules $200 so it’s not cheap.  The actual operation doesn’t cost anything, as the doctor doesn’t charge.


NATURAL AND COMPLEMENTARY THERAPIES :

Q
What natural herbs (or medicines) did you take prior to your operation to help the healing.  
And do you know of any natural therapy that is able to heal the fibroids?

A
Up to this stage (June 2004) I have not been able to finish the chapters on ‘Complementary Therapies’ and 'Natural Therapies' completely – and there is much to tell. So this will be a long, yet still too short, answer:

I received an email from a patient who has considerable success in reducing the size of her fibroids along with some of the symptoms, with naturopathic and Chinese herbs and acupuncture, and she hopes no further treatment will be necessary (see Patient's Story below).
Another patient told me: " The herb I used to stop the bleeding is Female Formula. I was literally pouring blood like a faucet!!! And cancelled two scheduled hysterectomies much to the disappointment of many watching my struggle.
As well, Edgar Cayce, our sleeping prophet............as many know of him, advises castor oil compresses or rubbing it in daily.
The fibroids are still there. They grow or shrink according to the nature of my diet. I did not keep the castor oil going once the bleeding stopped."
[Details of this ‘Female Formula’ will be posted in the appropriate chapter. It contains well-known herbs that mainly work as precursors for female hormones – which can be helpful for some but do not enough for others].
Another patient reported: "I'm already taking natural medicine & I think that’s the reason for no heavy bleeding now. But, all natural medicines work for 3 months & then my bad luck starts again. Especially tummy cramps, bloating, headaches etc. So I have to try something else. The naturopath (only talked to her twice on the phone) thinks she can shrink the fibros. I was so excited after I saw your site & so for now cancelled my appointment with her."

My own experiences with all of the above, plus homeopathy, reiki, meditation and bio-resonance, was that the effect was cushioning at best ... but not solving. This goes to show how different the results with natural medicines can be. Natural healthcare therapists may tell you that (theoretically) fibroids can shrink with natural medicine – but in most cases you do have to stay on top of it, all the time……and mostly for quite a while – as fibroids tend to recur when hormonal balance is not maintained. According to their location this will give a recurrence of symptoms.
Personally, I prefer to use natural medicines whenever possible . All available natural therapies can be very helpful in any case when used as a complementary treatment.
I had been using natural progesterone cream (prescription only) for quite a while prior to embolisation – to at least keep some kind of hormonal balance and prevent the fibroids from growing further. However, it takes some time to build up your hormone blood levels.
Around the procedure, I used homeopathy (Arnica 200 amongst others). It is best to consult a homeopath, as proper dosage is important; people differ and things can aggravate from wrong use with homeopathy. I will elaborate more on this in the upcoming chapter.
But possibly the most important measure I took prior to my embolisation that might have made a difference, was a Bio-Resonance allergy test for the materials used with embolisation – contrast fluid and PVA particles. It appeared that I had a slight allergic reaction to the contrast fluid. This was followed by an energetical correction. This correction most likely prevented a slower healing process due to allergic responses. Some further Bio-Resonance balancing put me in mint condition for the procedure. I did not have any pain at all after the embolisation, which doesn’t seem to be the rule, and I at least partly contribute it to all I did, plus the healthy diet and necessary vitamin supplements that I use on a regular basis.
There are more electronic healing devices that are able to contribute to healing – some even claim to heal fibroids altogether... Even though it may sound like hocus-pocus to some people, there's a serious science behind it. Again, I will go deeper into the matter in the upcoming chapters.

I hope this will be of some help. But mind you, every-body is different. Do what feels right, and avoid becoming TOO stressed about the whole thing – and it will turn out for the best !


FINDING THE RIGHT DOCTOR :

Q
Please contact me, as I require urgent assistance with regard to fibroid issues and need to speak with a doctor personally.  As yet I have been unable to find any doctor who can assist.  The Melbourne Fibroid Clinic is now closed and I require the contact details of similar clinics in Melbourne that can assist.

A
You are lucky: one of the former associates of the Melbourne Fibroid Clinic is the leading Interventional Radiologist in Australia, who has his practice in the Alfred Hospital in Melbourne – where I had my procedure done as well. You can contact him directly, and should you wish to consult a gynaecologist who is knowledgable about alternatives to hysterectomy in your area, he can probably suggest one.

[A list of interventional radiologists and referring doctors is incorporated in the fibroid embolisation (UFE) chapter: CLICK HERE ]


EMBOLISATION – POST PROCEDURE PROBLEMS :

Q
I  had the Uterine Fibroid Embolisation done last week. I didn’t have any problems with the actual operation – just had nausea and bad pain for the first few hours afterward.
The only thing is I have been very clogged up since - probably from the suppository antibiotics and the morphine etc. The Interventional Radiologist recommended pear juice, as that’s what the cancer sufferers are given in the hospital if they have that problem.  

A
Pear juice is worth a try. Next to that, drink as much fluid as you can, mainly water. You can also try psyllium husks with it, as they regulate the bowel.
Drinking lots of fluid straight after the procedure is very important, to flush the contrast media out. This may even prevent constipation or other (allergic) reactions (like diarrhoea, rashes etc.). 


PASSING OUT FIBROIDS AFTER EMBOLISATION

Q
There was a girl opposite me in hospital who had the embolisation procedure 6 weeks earlier, but her body hadn’t been able to pass the fibroid out as it was large, so she had it taken out. This frightened me. As I understood later, her fibroid was meant to pass out, but it must have been too big even after it had shrunk, for her body to pass out.

A
Fibroids usually do not fall off so that they have to be passed out after embolisation, something like that happens only rarely with certain types of fibroids.
In this case, where it possibly was intentional – or at least expected and monitored – the fibroid possibly didn’t shrink fast enough. When a fibroid is expelled, comes free from the uterine wall, it has to pass out quickly in a natural way or be surgically removed. This will in most cases be easier than regular myomectomy, whereby the fibroid has to be cut out of the endometrium. In either scenario, infection can become an additional concern. But again, this is quite the unusual case.


CONFUSING INFORMATION ABOUT UFE FROM DOCTOR

Q
Thank you very much for your reply. You don't know how happy I am to get a reply from you.  If you don't mind me asking - did you go through the same procedure? How did it go & how do you feel now?
I am waiting for a specialist to provide me with a referral letter to one of the specialists who does this procedure in Sydney. For some reason, this referring specialist didn't sound convincing - he gave me hopes when I saw him the first time & changed the story completely the next time & I don't feel comfortable seeing him again. He suggested that if something goes wrong (eg. blocking some other artery), I may not be able to walk. That scares me. Some attachment on internet (can't remember if it is yours) says that it can lead to death as well.
Anyway, I am going to go for this embolisation procedure. Will be better than having a hysterectomy. Appreciate your help again.

A
Keep courage. This procedure is a fantastic option.  My personal experiences after UFE: my horrific periods of 15 days, dozens of tampons (together with pads for the accidents) are down to ... 3 days and only a handful of pads. My horrific pain went down straight away and after a year I had no pain at all with my periods.
You can ease your worries by reading my article on UFE. It will give you a better understanding about the embolisation procedure, likely more so than what your doctors will have time to explain to you.
The chance for blocking off a wrong artery during embolisation is as big as the chance of having your arm cut off during a hysterectomy. Sure, with a scalpel in the wrong hands anything is possible... And we all hold potentially dangerous knives every day while preparing food...
With any  medical procedure something can go wrong. With hysterectomy surgery the risks are far greater than with UFE, and mortality rate is much higher with hysterectomy. To date (2004), no deaths have been reported in Australia from UFE, it is considered a very safe procedure.
Each situation can call for a different approach, so please read all the inns and outs of the fibroid embolisation procedure on my website, as well as My Story and the Hysterectomy chapter, if you wish to compare. Also, the two chapters about fibroids (A1 & A2) is recommendable reading. And just go and see an IR (interventional radiologist)!  

This will equip you to make your OWN choice – don’t be put off by what referring doctors say; they all have a different story.


Q
My gynaecologist talked me out of the embolisation because it involved "bombarding the fibroid with plastic pellets". Also I'm 52 and he is happy to let me wait till menopause comes along and hopefully shrinks my grapefruit-sized visitor. However that's not happening yet and I want to stop looking like I'm 5 months pregnant and having painful periods.

A
Your GYN may be happy to let you wait, but I can understand you are not. Weighing possible risks will also depend on when your menopause will actually set in. An indication can be the age on which your mother reached menopause; it tends to be around and about the same age in families. The tricky part is that natural menopause results in a gradual loss of oestrogen production (the hormone on which fibroids feed) – and a decrease in size is expected to take place over a number of years rather than a few months. There's one section in the UFE chapter (B2) under FAQ's that describes a bit more about the wait and see / natural shrinking option – also, look under “possible limitations / age” in this chapter.

Patients Reaction
I finally had a consultation with the IR in Brisbane last week and was very impressed with his knowledge and approach. The information he gave me made it very easy to decide that in my case, the risks outweigh the possible benefits. Also, a course of acupuncture and Chinese herbs is alleviating the pain quite dramatically.


NOT A GOOD CANDIDATE FOR EMBOLISATION?

Q
I had a phone conversation with an interventional radiologist who suggested  I may not be a good candidate for embolisation. He said I might get infections, due to the position of the fibroids & so may be good to go for a hysterectomy. He was very nice to talk to & gave me the name of an IR close to me. I'll see what he has to say. I was very disappointed .
Some days, I find it very hard – tiring, headaches, tummy cramps (quite often), leg pain, hair loss, etc. I had some heavy bleeding, but this only happened once or twice – that was enough to scare me. My stomach is also blotted up. Think I'll continue for a few more yrs like this up until I come to the stage that I can't cope anymore. Then, will consider hysterectomy.

A
I’ll keep my fingers crossed for you. It can sometimes be difficult for physicians to determine over the phone what’s going on with the fibroids, docs have their own way of reading  and interpreting ultrasound results and the like. So do have a second opinion with a doctor near you.
Should you not be a good candidate for UFE, try and find some support from a good homeopath and or acupuncturist; that and a good diet will cushion some of the blow of the monthly ordeal. But if it starts to rule your life too much......that’s not a healthy thing either...

Patient’s Reaction
Just to let you know that I am going to undergo embolisation in June. I saw the other IR 2 weeks ago and he said as my fibroids are intramural, he can do the procedure.
I didn't have both my scan results when I was talking to the IR over the phone & so didn't know that they are both intramural. I'm his first patient for this procedure for uterine fibroids, though he has used this procedure on cancer patients.
I'll let you know once the procedure is over, if that can help anyone else who is suffering due to this problem.



TO ASK YOUR OWN QUESTION CLICK HERE

SHARING INFORMATION

Patient’s Story
The last few months has seen a battle to shrink the fibroids and I have tried various methods.  I have been seeing a clinical nutritionist, and I have been having acupuncture together with Chinese herbs.  Together these methods over the past 6 months have been successful in reducing the size of my fibroids and alleviating most of the connected pain & discomfort:

In the case of fibroids I am your typical Woody Allen movie when he is stricken by death consciousness....you name it I'm doing it.
I now have in the past four weeks begun intensive acupuncture treatment, every second day. I have also begun Chigong in the form of the Zhi-Neng style...the masters of this form have been healing people for centuries in the world’s only medicineless hospital outside of Beijing. I also am seeing a clinical nutritionist, who prepares amazing tailor made elixirs of enzymes and antioxidants.
Furthermore my new G.P. is a holistic doctor who prefers all these approaches even though it’s a tough battle getting rid of these clingy suckers who have made my womb drain my body of blood and energy.....it took a while for the body to make fibroids...so I’m gonna hang in there and let my body take a while to expel them.
The hard part now is sticking to a good diet regime and exercise – which I really prefer to do mentally than physically… However, there is degeneration of my fibroids; with the big one shrinking from 10cm to 8cm and the smaller ones from 4cm to 3cm.

I am confident that the fibroids will continue to reduce.  However, I do have in mind to contact an Interventional Radiologist for a further opinion. 

Editor's Reaction
I’m glad you had such good results with natural therapies. An awareness of the deeper causes for illness and restoring balance – which natural healing is aiming at – is paramount to proper healing.
Many of us will recognise this fear aspect, nonetheless, fear can sometimes be a bad councillor…
At the same time, attempting to heal fibroids completely natural, needs a lot of courage – and can oftentimes be a lengthy battle, with an uncertain outcome; fibroids might regrow as soon as another imbalance in the system arises. This requires keeping on top of it – a stress in itself if we’re not careful. This may sound somewhat discouraging, but I know from experience it is good to stay realistic. From my own struggles in that direction, I learned that with a lack of proper ‘highway’ (blood) supply of oxygen and nutriments, it can indeed become an uphill battle...   For me personally, it proved to be too ‘steep’… after two years.
But it’s not impossible.
It’s all part of your own journey, and only you can make the choices. The art is to know where the switching-point is…

But let’s think positive, as you’re already gaining. Good on you!  Truly, I wish I had succeeded in that way…but next to that, a large part of me wishes I had the embolisation straight away.
Just beware; when people start battling like this, it is all too easy to forget what it’s like to feel really healthy and energetic. It may start to become a way of living, and it can become hard to recognize when to stop feeling and acting like an ill person…...yes, even though you are working on your health in a positive way.

In any case, it is helpful to be in the best shape possible – also if you do decide you need to do something more, and perhaps consider embolisation.

I’ll keep my fingers crossed, and hope to hear more and more positive news about healing fibroids naturally...from other patients as well !



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