Who will teach My Doctor about Endometriosis?

by Belle Browne R.N

I began nursing school at 17 years old and had my first symptom of endometriosis at age 16 years old. That was in 1979. It is now 22 years later and doctors and nurses are still not educated in caring for, looking after or 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 that the only time she felt good, was while she was pregnant. They say that's the reason why she had so many children.

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. There is no cure in sight.

This female disease, which effects conservatively 1 out of every 10 women, nearly 90 million women world wide. There are many theories and one is that dioxins play a huge role in endometriosis, with their effect or damage to the sufferer's immune systems. The oldest theory is retrograde menstruation, but that is getting more unlikely. The possibility of being a genetic disease is becoming more favourable. No matter what causes this debilitating and painful disease, we need more people educated about it, especially within the medical community.

With a ratio of 1:10, there it is every chance that we all know someone suffering from endometriosis. It could be your wife, mother, sister, aunt, 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. So few doctors know how to perform this surgery. It is said to be the most difficult kind of surgery, harder than cancer to remove.

Endometriosis is 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 nowhere to escape to and so it causes swelling and irritation. This all in turn, causes debilitating, unbearable pain. Later, adhesions may form and cause infertility. In fact, endometriosis is the leading cause of infertility in the world and some patients present with no pain. This makes the disease even harder to understand and diagnose. Some women with severe disease have no pain or symptoms besides infertility and others have minimal disease and a huge amount of pain. The only consistency with endometriosis are the inconsistencies.

There is a desperate need for education, not only for the public to be aware but also among the medical community in general. 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 God, which he thought he was or wants to be. If that's the case and he feels like a failure, this can be very bruising to a trained doctor's ego, let alone the best gynecologist.

There are only handfuls of recognized endometriosis specialists worldwide. They are few and far between. The doctors who have branched into endometriosis, have either worked in infertility or as endocrinologist or a gynecologist 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.

Many sufferers get onto a merry-go-round of continuous surgeries, each causing more adhesions and more pain. If all of the disease is not excised, it can sometimes take only a few weeks 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 labeled a complainer or even a hypochondriac. Of course they give into more surgery.

It is a terrible merry-go-round to get on. Some women are reporting over 20 surgeries. If they had a recognized endo surgeon in the first place, they might have been put into remission in the early years of their disease.

I would encourage endometriosis sufferers to join their local Endometriosis Association. A good place to start is the website: http://www.endometriosis.org/. Go to the Support page on this site. It lists the Endometriosis Associations all over the world.

There is also an up-to-date documentary called "Endometriosis The Inside Story". Go to this site and you can read all about it. There is help out there but you have to look hard for it and researching endometriosis is the sufferer's best weapon. Get educated and quickly.