Introduction

WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT FIBROIDS

About this Website

DURING THE MANY MONTHS I was compiling and writing this information . . . and reading more . . . I realised this was becoming more than a website; this started to look like a book.

The most important parts of this ‘book’ are finished, and I’d like this information to be available for you – to share it as it is now.
The chapters I’m still working on will follow soon, as will eventually the book. In the mean time, it is my sincere hope that you will be helped and perhaps inspired by this information as it is presented.

A Personal Note

But first let me introduce myself briefly. I have struggled with fibroid disease myself – didn’t have big fibroids but I did have ‘big’ symptoms for years. Initially, I learned to live with it, swallowing heaps of iron-supplements to keep me going, and learning to ‘accept’ the pain – as none of the doctors I consulted suggested to check for fibroids as the possible cause. It wasn’t until it became so bad and I was recommended acute Hysterectomy, that I learned I had fibroids.

Had I been informed of all available treatment options at that stage, things wouldn’t have been half as bad. But that lacking, I had to do my own ‘research’; I started with reading up on Hysterectomy – and made my decisions . . . as you can read about in 'My Story'.

Unimpaired and Straightforward Information around Fibroids

The reason for starting up this website is to fill in the information-gap that I encountered around woman’s health.

An effort has been made to balance a broad spectrum of information – including some less public data. It is a compilation of a diversity of scientific data as well as personal experiences of patients.

I write candidly about the many aspects of healing fibroids. Mirroring my own experience, questionnaires among patients have revealed that, sadly enough, evasive answers are sometimes given by some gynaecologists when women seek information around alternatives for Hysterectomy – which has been the standard treatment for symptomatic fibroids.

There is another important treatment option, that is often not made available to patients, called Uterine Fibroid Embolisation (UFE). Like Myomectomy, it leaves the uterus in place, and may also preserve the ability to have children. Embolisation is 90 percent effective in alleviating the symptoms from fibroids, and is much less invasive than surgery. This procedure is performed, not by Gynaecologists, but by Interventional Radiologists – doctors who specialise in targeted, image-guided treatments that generally replace surgery. These procedures are an advance in medicine; they are easier for patients because they involve no large incisions, less risk, less pain and shorter recovery times.

Perhaps misinformation about alternatives for surgery, as well as the importance of the uterus, happens unwittingly – but I believe physicians do have a responsibility to inform themselves, and their patients, adequately. As a patient we’re often not equipped to do this for ourselves, and may suffer needlessly because we have to ‘beat our way around several bushes’ to get where we want to be.
There is a special introduction page for (referring) physicians, and I sincerely hope they too will use this website to obtain a – much needed – overview about all available treatment options and the latest developments for dealing with this widespread condition of Fibroid Disease. I know from experience that patients are in need of informed medical support.

It is a basic right to have control of your body and make decisions about your health and health-care on the basis of all available information, free from the pressure of following your physician’s preferred treatment option.

If I do have a bias, it is towards my commitment to hand women all the information they might be seeking, unimpaired and straightforward.

I would like to ask you a small favour: please take a few minutes to fill in the questionnaire (you can find this in the forum section). I would be very happy with your feedback, it will allow me to improve the book and make it a truly informative and complete work on healing fibroids, on all levels.

I hope all this will be of benefit and may contribute in helping you to make informed decisions about your treatment.

A word of Courage

As a patient you are always responsible for your own wellbeing – no matter what. Nowadays you’re ‘expected’ to be, more than ever.
Physicians expect YOU to decide what you want; it’s your body, it’s your choice.

With all legal liabilities, doctors might be careful about what they state, and it might be hard for patients who ARE seeking to make an informed decision, to obtain the information they can base their decision on. No doctor will be able to give any guarantee about any treatment. And so it may easily happen that patients see no other way than to lean towards the treatment option their doctor has to offer.
Some patients that keep on asking, might even encounter a physician who simply TELLS them what to do – in their ‘best interest’ – and who might appeal to the patient’s trust... or lack of it. There is a growing body of opinion in society, that perhaps some doctors may be telling patients what is mainly in their (hospital’s) best interest.

There’s only one way to know the difference: INFORM YOURSELF – use your head as well as your heart. Ask opinions and advice, but be aware about the fact that nobody really knows for sure what is best, simply because ‘every-body’ is unique!
You and you alone can decide for yourself.
This seems pretty tough, and it takes courage, especially when you are suffering from debilitating symptoms; it is much more comfortable to let the doctor make the decision for you. But think about it; this is not like having ones car fixed; often we spend more time finding a good mechanic...

Use your mind, but don’t get bogged in an overload of information; as a woman you’re equipped with a higher awareness of your intuition: TRUST THAT.

A special word for women who have completed their family

It has been noticed that even some clinics that specialise in myomectomy and promote to give advice on avoiding hysterectomy, can be somewhat biased towards the treatments they have to offer personally. And so it may happen that women who have completed their family are still advised to have a hysterectomy. While hysterectomy is a very effective treatment, it is major surgery, for which – in case of fibroids – alternatives are available.

As a patient, you need to widely inform yourself, also about the important role of the uterus – even after the childbearing years. And with all due respect, sometimes you might have to ‘educate’ your doctor a little, even if it is only about what is felt to be important amongst patients. Please do not hesitate to do so; perhaps you will be helping other patients.

Take care, and get and keep well.

Irma