Re: Article on Endometriosis Published World Wide
From: Wanda (anonymous@obgyn.net)
Tue Mar 5 19:35:55 2002
Belle,
Hey Sweety! Glad to see you around these parts! How is the pain???
The Article brought tears to me eyes. I have forwarded to my friends and
family!
I hope you are pain free! I am going back on Lupron for the next six months
to decide if I want a child or not. Dr. M and I have had a long conversation
about it. If I don't want a child, I have come to the decision of removing
the uterus. I can't take much more.
I send my love and well wishes!
Wanda
>----- Original Message -----
From: "B.Browne" <anonymous@obgyn.net>
To: "Multiple recipients of list ENDO" <anonymous@obgyn.net>
Sent: Monday, March 04, 2002 4:06 AM
Subject: Article on Endometriosis Published World Wide
> Titled :Who's Going To Teach My Doctor About Endometriosis"
>
> I began nursing School at 17 years old and I had my first symptom of
> Endometriosis at age 16 years old. That was in 1979... It is now 23
> years later and many doctors and even more nurses are still not educated
> in caring for and looking after or even treating an Endometriosis
> Sufferer .
> Marilyn Monroe suffered from Endometriosis and it is said that when she
> went in for one of her surgeries, she taped a note to her stomach,
> pleading with doctors not to take her female parts. Queen Victoria was
> heard to have said " The only time she felt good, was while she was
> pregnant " They say... thats the reason why she had so many childern.
>
> Endometriosis was first reported in roughly 1600 BC. It is now 2001 and
> we are no closer to finding what causes this disease or how to treat it
> and there is no cure in sight.
> This female disease, which effects conservatively 1:10 women or nearly
> 90 million women world wide. There are many theories and one is that
> dioxins play a huge roll in endometriosis, with their effect or damage
> to the sufferer's Immune systems.The oldest theory is retrograde
> mensturation but that is getting more unlikely. The disease being
> Genetic ,is becoming more favourable. No matter what causes this
> debilitating and painful disease, we need more people educated,
> especially within the medical community.
> With a ratio of 1:10, there it is every chance that we all know someone
> suffering from Endometriosis. Whether its your Wife, Mother, Sister,
> Aunty, Cousin or even Inlaws. There is a chance that one of your family
> members might end up suffering this incurable, insidious disease.
>
> The doctors don't know how to treat it, with the exception of excisional
> surgery and removal of the disease. But so few doctors know how to
> perform this surgery.Which is said to be the most difficult surgery,
> harder than cancer to remove.
> Endometriosis is thought to be an auto immune disease, where misplaced
> endometrial tissue, which belongs inside the uterus, is found outside
> the uterus. This misplaced endometrial tissue, bleeds internally, the
> blood has no where to escape to and so it causes swelling and irritation
> and then this all in turn, causes debilitating, unbearable pain. Later
> forming adhesions and often causing infertility. Infact Endometriosis
> is the leading cause of infertility in the world and some patients do
> present with no pain and only infertility, this makes the disease even
> harder to understand and diagnose. Some women with severe disease have
> no pain or symptoms besides infertility and others who have minimal
> disease, have a huge amount of pain. The only Consistency with
> Endometriosis is the Inconsistencies.
>
> There is a desperate need for education, not only for the public to be
> aware but mainly amongst the medical community it general. None of them
> seem to be able to handle or treat an Endometriosis Sufferer. When a
> doctor doesn't know or understand something and he can't go and look it
> up, due to the lack of updated information in the medical books
> available, then he can't be the God, that he thought he was or wants to
> be. If thats the case and he feels like a failure, this can be very
> bruising to a training doctor's ego, let alone the best Gyneacologist,
> who is not up todate on a disease, which is becoming way out of hand.
> There are only a couple of handfuls.. of recognized Endometriosis
> Specialists worldwide, they are just few and far between.
> The doctors who have branched into Endometriosis, have either worked in
> infertility or as endocrinologist's or a gyneacologist who has branched
> into endoscopic surgery( keyhole surgery) These doctors are very hard to
> find and sufferers need all the help they can get at finding them.
> Otherwise many sufferers get onto a merry-go-round of continuous
> surgeries, each causing more adhesions and more pain and if all their
> disease is not excised and every bit cut out, it can only take a few
> weeks to a month before it may all grow back. The patient then again
> presents in pain and surgery is the only way to check on the disease.
> The patient is very quickly labelled a complainer or even a
> hypochondriac. So ofcourse they give into more surgery.
> It is a terrible merry-go-round to get on and then to get off it, can be
> very hard, by then all the damage has been done. Some women are
> reporting up to over 20 surgeries. If they had had a recognized endo
> surgeon, in the first place, for their first surgery, they may have been
> put into remission, in the early years of their disease.
>
> Endometriosis Sufferers are encouraged to join their local Endometriosis
> Association in their country. A good place to start is at the website
> http://www.endometriosis.org Go to the Support page on this site and it
> lists alot of the Endometriosis Association's or Organizations all over
> the world.
> There is also a Great first ever made, Up todate Documentary called
> Endometriosis The Inside Story go to
> http://www.endometriosis.org/html/video.html and you can read all about
> it and its reviews or even how to order it.
> There is help out there but you have to look hard for it and researching
> Endometriosis, is the sufferer's best weapon, against this incurable,
> insidious and extremely painful disease. Get educated and quickly.
>
> By Belle Browne R.N
>
> --
> *-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*
> Belle Browne R.N Medical Advisor
> http://www.endometriosis.org
> Producer of the Documentary" Endometriosis The Inside Story"
> Read about the Documentary at : http://www.endometriosis.org/html/video.html
> Australian/International Endometriosis Representative
> email support@endometriosis.org
> Owner Female Chronic Pain Sufferers Forum
> to subscribe send an email to
> FemaleChronicPainSufferers-subscribe@yahoogroups.com
> *-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
>
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