well…what? endometriosis

Last week, endometriosis was on Lip’s radar, as pharmaceutical giant Bayer refuses to supply more than half a million Australian women suffering from the crippling disease with valuable pain medication. Endometriosis affects up to 10% of women worldwide and is defined mostly by intense pelvic pain. Twenty-three-year-old Sylvia Freedman, the woman behind the push for Bayer to supply the much needed medication in Australia, cannot hold down a job between the pain and the surgeries required to treat her endometriosis.

The endometrium is the cells and tissue that line the walls of the uterus. When someone has endometriosis, this makes its way outside the uterus through retrograde, or backwards, menstruation. In a typical menstrual cycle, when no egg is fertilised the uterus is supposed to shed the endometrium, and it’s supposed to leave the body through the vagina in what we call a period. In retrograde menstruation, some of it will leave the uterus through the fallopian tubes and out into the pelvic cavity. This is actually quite common, and a lot of women’s’ bodies’ immune systems clear away the mess, so to speak. When the immune system doesn’t do that, the misplaced endometrium can fall onto the ovaries (most commonly), fallopian tubes, the bowels, and other organs, and start creating painful lesions. This is endometriosis.

Endometriosis can cause extreme period pain, but that’s just the beginning. As time goes on, the pain can be felt consistently throughout the month and spread from the pelvic region to the lower back and thighs; it can also be painful to have sex, and to have bowel movements, but then other women don’t feel much pain at all. Some women don’t realise they have endometriosis until they have trouble falling pregnant, as the lesions can cause fertility problems.

A definitive diagnosis of endometriosis in Australia usually involves a keyhole surgery called a laparoscopy. A doctor will perform a physical examination to determine that the surgery is necessary to confirm the diagnosis. Even ultrasounds may not be able to pick up the lesions and scar tissue causing pain or infertility. Outside Australia, there are non-invasive ways of diagnosing endometriosis, but the medication, called Lupon, can have severe side effects.

Treating endometriosis is complicated, and unfortunately women in Australia do not have every option, as pharmaceutical companies such as Bayer do not find it profitable enough to sell their products here. Pain management through medication is the first method of treatment that is usually suggested, as it is the least invasive. Doctors often prescribed the oral contraceptive pill as well, as it controls hormones and can control menstrual flow. More invasive treatment options, such as surgery, are often unavoidable. Scar tissue is often removed through laparoscopic surgery, sometimes more than once. Research has found that the location of the scar tissue rather than the amount of scar tissue is a better indicator of the amount of pain a woman with endometriosis will feel.

Endometriosis affects one in ten women. It is a crippling disease, with many of those affected unable to hold down jobs, or having to call in sick every month. Like many illnesses that affect only those of us with a uterus, it goes under the radar. It is dismissed as teenage girls being dramatic over nothing more than cramps, as women being hysterical, and it often goes undiagnosed until the damage is severe, when it could have been treated far earlier.

If you think have endometriosis, or if you would like more information, speak to you local health practitioner.