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WHAT IS ENDOMETRIOSIS?

An Explanation of the Disease

Unless you have endometriosis, or know someone who suffers from it, you probably will never have heard of this disease.

How do you pronounce it??? What exactly does it do? And what on earth has it got to do with periods?

Endometriosis is a condition that affects millions of women throughout the world. It is pronounced "end-oh-mee-tree-oh-sis", but most of the time women who suffer from it and doctors alike, tend to shorten it to just "endo".

Despite the fact that so much research has been done since it was first written about in the early 1800s, it still remains a mysterious and puzzling disease. Many doctors have called endometriosis an “enigmatic” disease, because it manages to elude them time and time again. So far doctors have been unable to find a cure for it, let alone discover what actually causes it.

When it comes to endometriosis, it seems that there are no hard fast rules. It is very much its own master, making the rules up as it goes along. This means that it continues to baffle doctors and patients, causing confusion and chaos along the way.

So what exactly is all the fuss about? Why do women with endometriosis suffer so much, and why can't we just "get on with our lives"?

The name endometriosis is derived from the word endometrium - the tissue which lines a woman's womb. During a woman's menstrual cycle, the endometrium thickens in response to a woman's hormones. It becomes engorged with blood and tissue, in readiness for a fertilised egg. If there is no pregnancy, then the womb lining is shed, during a woman's "period".

For some unknown reason, tiny pieces of endometrium are found outside of the womb and inside the pelvic cavity. They become implanted within the pelvic wall, on the surrounding organs and ligaments, and behave in exactly the same way as they would if they were still inside of the womb. This means that during a woman's menstrual cycle, they respond to the hormones, become engorged with blood, and then break down and "bleed". The only problem is, there is no way for it to leave the body. This results in internal bleeding, which in turn causes irritation, inflammation, swelling and scarring to the surrounding tissue.

The most common spots for it to become implanted are:-

the ovaries
the fallopian tubes
the ligaments supporting the uterus
the internal area between the vagina and rectum (Pouch of Douglas)
the outer surface of the uterus
the lining of the pelvic cavity (Peritoneum)

It can also be found:-

on the intestine
on the rectum
on or inside the bladder
on the vulva, the vagina or cervix
inside old abdominal surgical scars
on the ureters (leading from the kidneys to the bladder)

Because the implants are bleeding internally each and every month, the body’s natural reaction is to try to cover the area with scar tissue. However, if the active endometriosis becomes trapped under the scar tissue, this can result in immense pain. It also means that an enormous amount of pressure is put on that scar tissue, due to the bleeding going on underneath it.

Another problem is that the ovaries may actually lose their blood supply, due to the damage caused by the implants. This degeneration and destruction of the localised blood can create a huge mass known as an endometrioma. This is sometimes known as a chocolate cyst, because of the dark brown colour of the blood within the cyst.

If endometriosis is left untreated, then scar tissue can build up to cause fibrous bands of tissue known as adhesions. These bands can join organs to each other, or can attach them to the pelvic walls. This means that the bladder could be stuck to the bowel, or that the ovaries could be stuck to the pelvic wall. Therefore organs that are meant to move freely within the pelvis are unable to move, which then causes more pain. Sometimes the adhesions can become so thick and dense, it means that the entire pelvis can become "frozen". Organs which are meant to move freely within the pelvic cavity are no longer able to, and the result is agonising and intense pain. The only way to relieve this pain, is by having surgery. During surgery the adhesions can be cut, and the organs are able to move freely within the pelvis once again.

Looking at all of this information and trying to understand the disease, it's not really surprising that women who do suffer from endometriosis, suffer from so much pain and misery. This isn't just about painful periods. This is a disease which can cause bowel problems, bladder problems and more often than not infertility.

One doctor told me that he hated having to tell women that they've got endometriosis, because he knows how much of an effect it can have on their lives.

Although endometriosis isn't life threatening, it can be incredibly debilitating and can devastate women's lives. It can turn lives upside down and inside out, in the same way that a cancer can. Some friends of mine have nicknamed endo as a benign cancer, because it can do everything to our lives that a cancer can, except from kill us.

Having said this, I do need to point out that it's not all doom and gloom. Many women do recover from the disease, and are able carry on with their lives as per usual. Some women find that having children helps their pain and symptoms. Other women find that having a hysterectomy does the trick. Other women just seem to get better, without ever knowing what it was that helped them.

However, people do need to be reminded that endometriosis isn't just some silly woman's problem. This is a disease which needs to be taken notice of, and people who don't know about it, need to be educated. The sooner a cure is found for this disease, the sooner millions of women world-wide will be able to get on with their lives without the constant fear of pain and suffering caused by endometriosis.

Endometriosis is a complicated disease. It lives by its own rules and takes no prisoners. If it is ignored and left untreated, then it only causes more complications along the way.

This is why it's so important that doctors and gynaecologists treat women with respect and dignity when they have been diagnosed with endometriosis. Parents, siblings, husbands, lovers and friends should all do the same. The more help and support women with endometriosis get, then the more likely it is that they'll be able to cope with their symptoms and maybe even beat the disease at its own game.

So, if you are reading this, and know someone out there who suffers from this disease, please cut them some slack. Living with endo is no joke. Trust me, I should know.