For Lesego Motshwane, it all started the year he turned 14. “One day I had a terrible stomach ache, I didn’t understand why. And then I went to the bathroom and saw bloodstains. My mother told me that I had my first period. But what should have been the ordinary coming of age marked the beginning of a long journey for Lesego. Because her period pains are so violent that her mother quickly realizes that something is wrong. It will take thirteen years and eight gynecologists for the diagnosis to finally fall: Lesego suffers from endometriosis. In her home in Soweto, she retraces all her years of wandering. “I was initially diagnosed with ovarian cysts. It was during my third operation to remove them that a doctor told me I had endometriosis. But I didn’t understand then what it was. »
It is generally estimated that it takes an average of seven years for women who suffer from endometriosis to be correctly diagnosed, even though the disease affects one in ten women. And if in Europe, awareness has progressed well in recent years, this is not the case in South Africa where, due to a lack of specialists and ignorance of the disease, it can take much longer. “It’s not a public health priority for the government,” says Dr François Retief in his Johannesburg office. He is one of the few gynecologists in the country to have specialized in the disease. “Gynecology in South Africa is also more obstetrics oriented. In four years of studying gynecology at university, I think I’ve only studied cases of endometriosis twice! » As there is no specialization in endometriosis in South Africa, it is up to gynecologists according to their interest to deepen the study of the disease. “It’s very informal. As in Europe, there is no large health center dedicated to endometriosis. Doctors who are interested in it often go abroad to train, and find out for themselves. »
A preconception does not help in the diagnosis: the idea is still rooted in South Africa that African women are less affected by the disease than white women. A fact underlined by several studies, whose methodology is now called into question. “It’s wrong, we have patients from all backgrounds, annoys Dr. François Retief. We should get rid of this belief, and treat everyone the right way. »
For endometriosis is already a complicated enough disease: Characterized as the development of uterine lining-like tissue outside the uterus, its causes are still unknown, and the variety of symptoms causes the disease to take extremely vary by woman. There is a master symptom though: pain. Pain during menstruation, pain during intercourse, and sometimes permanent pain, depending on the severity of the disease.
For Lesego Motshwane, it’s all the time. “Sometimes it’s like lava flowing all over my body. Sometimes like stab wounds. I have migraines. And sometimes it’s all at once. “At 38, it is no longer possible for the former communicator to return to work. “I’d be fired for absenteeism!” His severe symptoms frequently invalidate him, and now punctuate his daily life. She who loved to drive long distances is now condemned to the passenger seat, because endometriosis affects a rib that makes it painful to shift gears. Her ankles are terribly swollen, and during a very bad period, she had her body covered with small, brown, scab-like cysts. “Just doing the dishes can take me an hour: some days I’m in so much pain that I can’t stand for more than five minutes.” “She hardly goes out anymore, and finds it difficult to keep in touch with her friends, who do not always understand her illness. “Even recently, a cousin asked me, ‘What’s wrong with you?’ »
Faced with the lack of knowledge of the disease, Lesego Motshwane decided to create a foundation, dedicated to supporting and informing women suffering from endometriosis. On social networks, she tries, like other victims of the disease, to make it known, and to direct affected women to specialists. It has only identified nine for the whole of South Africa. She herself has tried many treatments, and undergone five operations, without noticeable improvement. There remains the option of removal of the uterus, but this is out of the question for Lesego. “I want children!” protests the one who defines herself as an endo-warrior. 30-50% of women with endometriosis have an infertility problem, but this is not her case. And such an operation would not even guarantee a cure: at present, there is no treatment that can cure endometriosis.
