097 17.03.2015 Runway model Millen Magese is in South Africa to raise awareness about endometriosis. Sandton Skye, Sandton. Picture: Itumeleng English

Cape Town – The pain in Martha’s pelvic area is indescribable. She dreads the time when she menstruates because of the sheer agony she experiences.

She laughs bitterly when she speaks of sex with her husband.

“Forget it,” she says, “the pain is too much. It’s been an issue in our marriage for a while… us not having sex. He must be fed up with me by now.

“Also, we want children but I haven’t been able to conceive since we got married which is more than five years now.”

Recently Martha, who was unable to stand the pain and discomfort, was finally diagnosed with endometriosis. It occurs when tissue that usually only lines a woman’s uterus, grows in other regions of a woman’s body, such as the ovaries, colon or bladder. The symptoms of endometriosis are severe: chronic pelvic pain, painful menstrual periods, heavy menstrual bleeding, ovarian cysts and painful sexual intercourse.

One of the features of this condition is the mystery surrounding it. It is unclear how it comes about and how it is best treated. Most women who have endometriosis are reluctant to tell others about it because no one knows what it is. Living with a chronic condition that few people know about makes many women feel isolated.

Yet endometriosis is surprisingly common. It is estimated that 200 million women and girls around the world (about one in eight) suffer from this condition. It is one of the most misdiagnosed and mismanaged diseases in modern medicine.

For this reason March 28 has been declared World Endometriosis Day by various international support groups.

While biomedical research on endometriosis continues at a steady pace, its psychological aspects have not been well-researched, especially in South Africa.

We have been conducting psycho-social research in the field of endometriosis for the past two years. When we started research in the public healthcare system we were told that endometriosis was a “career woman’s disease” and that it was unlikely that we would find women in the public healthcare system with endometriosis.

However, two years into our research on the quality of life among women with endometriosis, it is clear that the condition affects all women regardless of race or class.

But why is endometriosis shrouded in silence?

Firstly, it is widely associated with menstruation, which is not generally open for discussion in society, and thus problems associated with menstruation, such as endometriosis, are also not discussed.

Secondly, endometriosis is associated with infertility and many women bear the double stigma of living with a gynaecological disorder and having difficulty in conceiving a child.

Infertility is a huge concern among women with endometriosis. It has an impact on women’s perceptions about themselves, their self-esteem and their romantic relationships. Some women have said that infertility results in their spending less time with others as they do not want to be around children and do not want to be questioned about their childlessness.

Thirdly, many people regard menstrual pain as normal and therefore endometriosis is not regarded as a “real” illness.

Dismissal of agonising pain as a normal part of what it means to be a woman causes distress.

As a consequence, many women feel misunderstood and make a concerted effort to hide the pain from others.

Many women seek treatment for period pain for years before their doctors suspect endometriosis. One study conducted in the UK showed that the average time that it takes to diagnose a woman with endometriosis is eight years.

Women with endometriosis have told us that they find it cumbersome to explain it to others. They say that if more people were informed about endometriosis, psycho-social aspects of the illness may improve.

Ultimately, we need to find a cure for endometriosis, and to develop non-invasive diagnostic tests to detect the condition in women reporting its symptoms.

Perhaps it is time for our schools to consider implementing health screenings for endometriosis among girls and young women and for funds to be directed at biomedical and psychosocial research.

Making endometriosis more visible can result in understanding, empathy and support for women with the disease.

In the meantime, Martha and other women living with endometriosis experience pain when menstruating, profuse bleeding and difficulty with intercourse.

Martha has a bright outlook on life, however. “It’s awful this pain, but what can I do? I have to carry on,” she says.

* Roomaney is a registered counsellor as well as a PhD student at Stellenbosch University. Kagee is a professor at the Department of Psychology at Stellenbosch University. They have been conducting research into the impact that endometriosis has on women’s quality of life. A journal article based on this research has been published in an international journal, the Journal of Health Psychology.

Cape Times