Living with endometriosis

Painful periods. A subject about which most women could write a book. But how do you know when the pain you're experiencing is an indication of something more serious than your monthly menses?

As young girls, we are taught that periods are a part of every woman's life. And periods are supposed to be painful. So we learn to deal with it. We learn to bear the onslaught of cramps, bloatedness and PMS, lugging a hot water bottle and a stash of Myprodols to bed to get through it all.

I used to get such debilitating cramps before my menstrual period that I passed out. After numerous visits to a range of specialists, I was diagnosed with endometriosis.

I was immensely relieved to finally attach a medical name to the beast that haunted my body every month, glad to hear that I wasn't a chronic hypochondriac with an overactive imagination and a below-average pain threshold. But naming it doesn't make it go away. I was only at the start of a lifetime battle with endometriosis.

The word "endometriosis" is derived from the word "endometrium", referring to the lining of the uterus. This lining, normally found inside the uterus only, also occurs outside the uterus in women with endometriosis. During menstruation, when the lining is shed, the endometrial tissue outside the uterus has no way of escaping and may cause painful cysts and lesions in the pelvis and on the reproductive organs.

The more I researched endometriosis, the more startled I was to learn just how many women had the condition. I started talking to family, friends and work colleagues and it appeared that everyone seemed to know at least one person who had it.

If the disease was as prevalent as my research indicated, why hadn't I heard about it before? Why did there appear to be a shroud of silence that engulfed the condition? Why do people feel the need to lower their voices every time they speak about it?

According to Dr Sulaiman Heylen, a specialist in reproductive medicine at the Cape Fertility Clinic in Cape Town, endometriosis occurs in about 5% of the general female population. He says up to 80% of women who present with chronic pelvic pain have endometriosis as well as about 25% of women who experience infertility.

The statistics stagger me: 5% equates to roughly 15,000,000 women worldwide.

My research left me with more questions than answers. Why weren't women's organisations creating a huge noise about the disease? Why had I never heard about an endometriosis awareness campaign aimed at young women? Why didn't endo have its own little pink ribbon campaign?

Then I realised that admitting to having endometriosis is not the same as casually mentioning that you are allergic to peanuts.

Perhaps the more revealing statistic is that a quarter of the world's infertility problems are caused by endometriosis. Most women take childbearing for granted, something that comes naturally, something that defines the very essence of their womanhood.

Acknowledging the existence of endometriosis in your life is an admission that something is broken, something basic that ought to be a God-given right for every woman. The nuances of the disease are such that a woman with endo can never really be sure whether she will be able to have children, until she actually tries to fall pregnant.

For women like me, diagnosed in their early 20s or even earlier, this could result in years of concern about whether we will ever be able to have a child, whether we should get married earlier than we planned in order to start a family.

Little wonder, then, that a wall of silence has been built around this disease: it permeates your most intimate personal and emotional space.


The only way to diagnose endometriosis is to have a laparoscopic examination. During this procedure, the doctor inserts a tiny camera, called a laparoscope through a small incision in the navel in order to examine the abdomen and reproductive organs.

Many women only discover they have endometriosis after a few failed attempts at trying to fall pregnant.


Heylen says that many women who have endometriosis are asymptomatic, meaning they don't have any symptoms at all. Those that do have symptoms are likely to experience:

(1) Pain: dysmenorrhoea - painful menstruation (lower abdomen, lower back, legs); chronic pelvic pain - lower back pain and/or abdominal pain; dyspareunia - painful intercourse; dyschezia - painful bowel movements; dysuria - urinary urgency, frequency, and sometimes pain when urinating.

(2) Infertility – Reduced monthly chance of conception.

(3) Sometimes bloating, heavy menstruation, nausea and symptoms associated with irritable bowel syndrome.

Treatment options

During my laparoscopy the doctor removed some of the endometrioses. This is usually done to reduce the pain symptoms and may also increase chances of falling pregnant.

After the procedure, my gynaecologist prescribed a course of Zoladex, an injection which releases a hormone called gondotropin. The treatment simulates menopause, since the general understanding is that the onset of menopause slows down or stops the occurrence of endometriosis.

At 22 years old, then, I found myself experiencing the discomfort of hot flushes at inopportune times.

Following my little foray into menopause, I then started a course of progesterone injections, Depo-Provera, commonly used as a form of contraception. They're scheduled for every 12 weeks, and may curb or stop your period altogether, making it more difficult for the endometriosis to flourish.

Heylen says there are many different treatment options. These may range from simply taking painkillers to hormonal therapy (such as birth control medication or the gondotropin drugs).

"It is, however, important to understand that endometriosis is a chronic disease comparable to asthma or diabetes. Often a cure is not possible, but with adequate treatment we can manage the disease well. The treatment is different for women with infertility or women with pain," says Heylen.

Surgery is another treatment option. During conservative surgery, such as the laparoscopy, the endometriosis is removed while the uterus and ovaries are not removed. During radical surgery, all signs of endometriosis as well as the uterus and ovaries are removed., a website containing the largest (almost 9,000) online collection of personal stories about endometriosis, emphasises that women should adopt a "long-term, individualised, holistic treatment plan" for a condition such as endometriosis.

Heylen also encourages healthy lifestyle habits, such as avoiding coffee and alcohol. While the cause of endometriosis is still unknown, the emphasis remains on damage control - early detection and reducing the symptoms. It is extremely important to educate young girls to recognise this disease and to alert GPs to diagnose it.

(Layla Salie, Health24, updated February 2011)

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