Endometriosis:

Cramps. Even the word is a turn off. Women don’t want to think about it. Men don’t want to know. In fact, I’d be surprised if many men continue reading this column, knowing it’ll involve cramps. Lots of cramps.
Like many women, I had cramps whenever my period came around. However, there was something very extraordinary about me. My cramps were so bad, they crippled me completely for two days per month. I’d faint in class and wake up in a taxi in front of my house, having been sent home by a sympathetic teacher. I’d bite my pillow and bawl my eyes out, scaring my roommates and baffling doctors. I ended up in a hospital on more than one occasion. Nobody knew what to tell me. Usually, I was prescribed painkillers and sent home to suffer in solitude. It was hard to plan any activities when that time of the month came around. I knew I’d probably be curled up in my bed, slipping in and out of consciousness and unable to even dress myself, let alone show up for work. People got a certain look in their eyes when I explained that I’d been absent due to cramps. “Everybody gets them,” I was told. The silent implication was that most women just deal with it. I felt like a sissy who couldn’t cope with the simplest of women’s issues.
Finally, after ten years of agony and a dozen useless doctors’ appointments, I attended a conference in Australia. One morning Down Under, I was sitting in my room, munching on my Cheerios and watching an early talk show where a woman was describing agonising menstrual cramps that plagued her for years. I put the Cheerios away and cranked up the volume in amazement as the woman said things about her condition that could easily have come out of my mouth.
The show’s focus was on a disease called endometriosis, something I became instantly convinced that I had. Upon returning to Iceland, I made an appointment with a specialist in the field, who cut me open and found out that I did indeed suffer from this particular disease. I found it utterly ironic that after having talked to numerous doctors in Iceland and the US (where I once lived), I had to go to the other side of the planet and watch TV before I could diagnose myself with this condition. Moreover, endometriosis is the second most common gynaecological condition and it is believed to affect approximately 10% of women at some stage during their menstruating years. It is also one of the leading causes of infertility in women over the age of 25. (www.endometriosis.org.)
That aside, endometriosis can also lead to cancer, which makes it more worrisome that nobody had mentioned the possibility that I might have this before. None of my girlfriends had heard about endometriosis either. As the general ignorance about this well-spread, serious disease became evident to me, I decided to do something about it.

What is Endometriosis?
Endometriosis is a hormonal and immune disease affecting women in their reproductive years. The name comes from the word ‘endometrium,’ which is the tissue that lines the inside of the uterus and builds up and sheds each month in the menstrual cycle. In endometriosis, this tissue is found outside of the uterus in other areas of the body, most commonly in the abdomen and on the ovaries, where it develops into so-called tumours or growths. These growths respond to the menstrual cycle and bleed each month. However, unlike the lining of the uterus, endometrial tissue has no way of leaving the body. The result is internal bleeding, degeneration of the blood and tissue shed from the growths, inflammation of the surrounding areas and formation of scar tissue. These growths can become cancerous, and women with endometriosis are at a higher risk for ovarian and breast cancer as well as melanoma.
The most common symptoms of endometriosis are pain before and during periods, pain during sex and heavy bleeding. Other symptoms include painful bowel movements with periods, lower back pain with periods, gastrointestinal problems and fatigue. Many women with endometriosis, such as me, also experience a range of immune disorders including allergies, asthma, eczema and certain autoimmune diseases. Infertility affects an alarming 30-40% percent of women with endometriosis and is a common result with progression of the disease.
No sure cure has yet been found. Diagnosis is generally considered uncertain until proven by laparoscopy. During laparoscopy, endometrial growths are often removed or destroyed, which can relieve symptoms temporarily. Yet it doesn’t prevent new growths from developing. Hysterectomy (removal of the uterus) and removal of the ovaries is considered a definitive cure, but an unappealing option for women who’d like to have children of their own. An alternative solution is to prescribe hormones to prevent ovulation altogether, stopping women from having their period. That way, the symptoms of endometriosis are relieved for the duration of the hormone treatment, after which the woman still has the possibility to become pregnant. Because it is believed that infertility is more likely the longer the disease is present, women with endometriosis are advised not to postpone pregnancy. However, they may have a higher rate of ectopic pregnancy and miscarriage, and have more difficult pregnancies and labours. Research shows that the risk of endometriosis and related health problems is higher in the children of women with the disease.

If you suspect you may have this disease, ask your doctor about it. Urge your friends who are experiencing these symptoms to do the same. (For Icelandic readers, the word for endometriosis is ‘legslímuflakk’). The Endometriosis Association puts it simply: “Because of the life-disrupting nature of endometriosis, women and girls are encouraged not to ignore symptoms.”

For more information, go to www.EndometriosisAssn.org. For Icelandic readers, go to http://www4.landspitali.is/lsh_ytri.nsf/pages/kven_0107