It’s a ladies special edition this week on Sisters Without Shame. On episode 31, radio news editor Merentia van der Vent unpacks her journey with endometriosis. March marks Endometriosis Awareness Month.
Endometriosis is a condition where tissue similar to the lining of the uterus is also found elsewhere in the body, mainly in the abdomen.
Van der Vent is radio news editor who is based in Cape Town.
What is endometriosis?
Endometriosis is a condition where the tissue that forms part of the lining of a woman’s womb grows outside of the womb into the abdomen, ovaries and other parts causing “excruciating pain” during a woman’s menstrual cycle.
“In a normal woman they grow in your uterus, but for some or other reason in women who have endometriosis these cells grow outside of your uterus,” Van der Vent explains.
“For a ‘normal woman’ who has a normal period these cells will leave the body during her menstrual period. With a woman who has endometriosis these cells don’t go anywhere; they stay inside the body, and they create havoc.”
Any woman of reproductive age can suffer from endometriosis. It typically affects women in their teens up to the age of 40. The reproductive condition is also associated with painful and heavy periods. “It is kind of gross for us. A healthy woman would have red blood and an endometriosis woman will have purple and brown blood,” she says.
“I knew at the age of 15 that something was wrong with me. One day I was home alone and had menstrual cramps. I couldn’t walk. I was alone, I needed help so I phoned my grandparents and I said, ‘Listen, I think I am dying because I can’t walk, and something is very wrong with my body.’”
Long road to diagnosis
Endometriosis is notoriously hard to diagnose. “In the proceeding years, medical doctors told me that they suspect I may have endometriosis and they would refer me to a gynaecologist.”
She visited several specialists. “This happened four, five maybe six times. Every time I had gone to a doctor and the gynaecologist was always the one to tell me, ‘But what does your doctor know? I am expert and I am telling you now, you don’t have endometriosis.’”
“My life went on and I just had these periods with abnormal and excruciating pain. Society, the women around us, all told us that it was normal and that you shouldn’t act as if your pain was worse than another woman’s pain.”
“They would say, ‘That’s what cramps are about, that is what menstrual pain is about so there is nothing special about you.’” Van der Vent was 39 when she was first diagnosed with endometriosis.
Treatment for women living with endometriosis includes medication or surgery, Van der Vent says. Her relief came from finally knowing what was causing her pain.
“At the time they had available a pill that you could use, but the pill cannot remove the endometriosis. All the pill can really do is keep the lesions the same size that it is,” she says.
For the first months after her diagnosis medication brought some relief.
“Lots of women have had different reactions to the Visanne pill…I had a good reaction but eventually the pain came back.”
‘You are not alone in your suffering’
One in ten women suffer from endometriosis. “When I went public about being diagnosed, so many women messaged me [privately] but none of them messaged me on my public platform. Women don’t talk about having endometriosis. Women don’t like to talk about menstrual problems.”
A common misconception is that women with endometriosis suffer the same pain as women with normal periods. “That is not the case. Not when you want to cry, not when the pain terrorizes you in your head. We cannot take just any pill for cramps,” she says.
Take the suffering one hour at a time, she advises. “I cannot think about five to seven days. I must think about just getting through the next hour. Once you’ve reached two o’ clock, think about two to three.”
Listen to the full interview on Sisters Without Shame
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