Regina Pasipanodya
Tinevimbo Matamabanadzo (32) spent 10 years of agony, without determining the exact condition she was suffering from.
She was finally diagnosed with endometriosis in her 20s and has now accepted her condition.
“Since the age of 15, I have been experiencing unbearable abdominal pains. I did not know what to do or who to ask considering that it was something which is considered normal during menstruation to experience some period pain,” she said.
“After being admitted to the hospital more often than normal due to the same problem, I ended up being diagnosed with endometriosis in my 20s. It is something that I first heard about during that time and got to understand more when the doctors explained it to me.
“This was something new to me and the bad news is I am not alone in this predicament. Endometriosis is a condition that is not commonly being talked about.”
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Is endometriosis a taboo?
Commonly known as “jeko gono” in the Zimbabwe context, endometriosis is a condition that is yet to be taken seriously as most women who might be suffering from it are not well informed about this condition.
Around 10 percent of women suffer from endometriosis, according to the World Health Organisation (WHO). This translates to about 190 million globally with almost 50% of women with this condition experiencing infertility.
In Africa, the exact prevalence rate of endometriosis is not yet with different studies reporting conflicting results between different countries.
In a post made by the Zimbabwe Society of Obstetrician & Gynaecologists (ZiSOG), endometriosis is described as a condition where endometrium tissue from the lining of the uterus forms and grows in places outside the uterus and these growths may lead to pain and infertility.
However, Dr. Bismark Mateveke of ZiSOG said unfortunately there is not much published data locally regarding endometriosis.
“The month of March is now an ‘Endometriosis Awareness Month’ globally which is an action month to support the 1 in 10 women with endometriosis.
“It is important to raise awareness of this condition since it affects the reproductive health of those women that have it and sometimes surgery procedures are used for those having difficulties leading a normal life because of endometriosis.
“Surgery is sometimes used to remove endometriosis lesions, adhesions, and scar tissues,” Dr Mateveke told She Corresponds Africa.
However, Matambanadzo, who has lived with this reality and had to undergo surgery but still is having difficulties conceiving, is making an effort to help other women realise and understand this condition
She established an online platform in 2014 under the name, ‘Zimbabwe Endometriosis Support Network’ which focuses on giving a platform to women to discuss, learn, and understand women’s reproductive health issues.
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“This idea came up after I realised that there was a gap in the whole system in terms of women’s health issues and the information that we get and the reason why women do not get a diagnosis. That is why l started the Endo support network,” she said.
“We started as three but right now we are about 200 in our support group and this is because in African culture it was considered taboo to talk about these issues on public platforms. Most women often do not feel free to discuss anything unusual about their menstrual cycle for fear of stigmatisation.
“This is one of the contributing factors that causes late diagnosis amongst women even if symptoms are severe. I had to get diagnosed with endometriosis in my 20s, 7-10 years later after I started experiencing the symptoms.”
Through the support group, women can discuss issues related to endometriosis in a safe space where they understand, can relate to each other, and also get counselling and guidance from specialists. The platform also offers an opportunity for women to support each other through information sharing.
“We support each other by talking to each other, just having someone who listens to you is so important. We exchange information about medication for pain alleviation and I think this journey has allowed me to create a community that can support each other, raising awareness on period issues, because in our culture this topic is always regarded taboo. So I realised that the more we talk about it, the more we get solutions and the more that people understand some of these things,” she says.
“The challenges that I faced was from the society asking why l was having such conversation but now they should be realising the problem and understanding it.”
A report by the African Symposium on Improving Menstrual Health Management in 2021 highlighted the need to ensure access to and informed choices about quality menstrual health services as part of universal health coverage and an integrated package of comprehensive sexual and reproductive health services throughout the life cycle.
According to the report, African countries agreed to take a holistic approach to understanding menstrual health issues.
African countries also committed to identify services available including those that address menstrual disorders; vaginal bleeding associated with pregnancy, childbirth, postpartum, miscarriage, fibroids, or other morbidities, cancers, and endometriosis; menopause; psychosocial and mental health issues as well as menstrual stigma.
WHO revealed that the cause of endometriosis is not yet known, but its symptoms can be treated with medicines or, in some cases, surgery.
Michelle Gwarisa (26) who suspects that she might have endometriosis confirmed that the pain that a person goes through can reduce their quality of life. The pain can be severe causing fatigue, depression and anxiety.
“It makes me feel so sick,” Gwarisa said.
“I have not yet been diagnosed but I suspect that I have this endometriosis. During my menstruation period, I could cannot stand up. I feel nauseous, and sometimes. I fall short of breath or even faint. It is so painful that I do not want to think about it,” said Gwarisa.
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Some individuals with endometriosis experience debilitating pain that prevents them from going to work or school.
In an interview with She Corresponds Africa, Nkosinathi Cheryl Kutenha (27) who has had endometriosis for about 13 years, said her diagnosis took long.
“I realised that when I used to pass out and have seizures. That is when I sought medical assistance but still, it took me a while to get a diagnosis. I finally learnt the truth about my condition last year,” she said.
“Through research that is when I discovered the Zimbabwe Endometriosis Support Network. It’s pretty much a group of women who are going through life with this companion, I suppose you could call it. And so far, the impact has been incredible. It’s good to feel validated and just know that someone else truly understands what I’m feeling.
“So I feel that it is good to have women who share their experiences daily, and we’ve gotten as far as sharing words of affirmation every day. We are called the Zimbabwe enemy support network, though there are other foreigners in the group from countries like Kenya, Canada, the UK, and the US,” said Kutenha.
Kutenha pointed out that there are different degrees of endometriosis depending on the stage that a person is in.
“Through our conversations, we would always know how women feel and go through this companion (endometriosis). Gradually we understand that it takes different forms and experiences differ. Sometimes it won’t be possible to ease the pain with simple paracetamol.”
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