Endometriosis is a frustrating disorder with no cure and seemingly no explanation for its cause, yet it affects 190 million women globally¹; South African women are uniting, offering each other support.
South Africa (25 April 2023) – More and more women are stepping forward to share their struggles with Endometriosis, and in South Africa, they are forming a supportive community. The Facebook group “Endometriosis South Africa” is becoming a safe space where women guide each other through the struggles of the disease.
Endometriosis, shortened to “Endo”, is a disease in which tissue similar to the tissue that lines the uterus grows outside the uterus in places where it doesn’t belong. The tissues thicken and once a month, these tissues break down, much like how a period cycle works, only the blood has no way of leaving the body. As the blood becomes trapped, it causes inflammation, pain and discomfort. This never-ending cycle can lead to a build-up of scar tissue and lesions.
The disease affects hormones, fertility, mental health, and overall lifestyle. Many women go undiagnosed for years, unable to pinpoint the various symptoms but today, more women are able to find the answers and proper diagnoses thanks to continued awareness efforts. What makes the disease so frustrating, is that there is no answer yet as to why it happens nor a way to cure it.
Having the disease can be mentally and physically draining. That is why having a good support structure is vital. The South African support group was created to give women a place to vent, ask advice, give advice and support each other. The focus of this group is to help women access treatment and medications that are available in South Africa. Many international groups offer great advice but for South African women, it can be inaccessible.
Meeting some of South Africa’s Endo Warriors
Zoé Kirsten is a member of the group and a talented photographer. She hoped to raise awareness this past World Endometriosis Day (14 March 2023), by doing a photo shoot highlighting some of the women from the group.
Her own personal story has been one of long struggle. She has spent her whole life telling doctors about her pain and the only resolution offered was a series of birth-control pills. When Covid-19 happened, Zoé had had enough, she met with a gynaecologist and through several consultations, was finally diagnosed and needed to undergo surgery.
Zoé had felt frustrated and alone in the process, not knowing an entire community of women was out there. Everything changed when she found the supportive community group. When she decided to do the photo shoot, she was able to connect with so many women.
“If you ever feel alone know that there’s a community of women there with you; one in every 10 women have this condition, I promise you that you are not alone. Speak up and normalise this because how else are we going to progress and have people know that this is a thing.” – Zoé Kirsten
The photoshoot brought together just a few of the thousands of women affected by Endometriosis. For this awareness shoot, Flamingo Makeup Artistry gave each of the women a mini-makeover and they rocked it!
The ladies include Dimakatso Nonyana, Sharló Eden van Zyl, Innocentia Fhulufhelo Rambau, Nikita Theresa Bunce, Lebogang Mthethwa and Itumeleng Morule. This is only the beginning, Zoé hopes to organise more of these photoshoots, to put faces to the struggles these women are facing. To raise awareness and to start conversations.
Speaking to some of the ladies from the shoot, we hear a very repetitive issue, that diagnosis is slow, often taking decades and that there are very few answers. But we also hear hope, determination and a drive to offer support to women in South Africa.
For Dimakatso, her diagnosis took 15 years. She was born with a birth defect that meant her intestinal organs were outside her body, surgery corrected this and as she matured, she found her pains became worse. Her doctors always explained that it was due to the surgery she had as an infant.
She refused to give up and insisted on advocating for her own health and finally, they were able to diagnose her correctly. In asking her advice for women still figuring it out, she insists one should never stop advocating for themselves.
“Always be vocal when you go to the doctors, ask questions and never start treatment you don’t understand or not comfortable with.
It is your body that they are dealing with after all so you want to understand everything that will be taking place” – Dimakatso Nonyana
For Innocentia Fhulufhelo Rambau, her diagnosis took 9 years. She had to go and do her own research to figure out what the disease really was. After her first surgery, she had hoped life would get easier but her pain didn’t change and she felt frustrated. She echoes what her fellow Endo Warriors say, and that is to focus on your own health and fight for it when needed!
“First thing is that it’s not your fault and the pain is not in your head. 2nd. Like it or not, your health is your responsibility. Take charge, join support groups, do research on the topic, speak to other endometriosis warriors, speak to your doctor and find ways to cope with your situation because each story is unique.” – Innocentia Fhulufhelo Rambau
Nikita Theresa Bunce ends off this important discussion by sharing that her journey was only 4 years to diagnosis but that the fight to get it was littered with loss and disappointment. For her, her battle had been infertility and miscarriage. She faced grief and all its stages before accepting what it meant for her to be able to grow her family.
She encourages women to be brave, to fight and to stand up.
“Listen to your body, follow your instincts and fight for yourself, because unfortunately there are too many women that have to live with this chronic disease and too little that are brave enough to talk about it to raise awareness. people wont understand because they dont see it as “normal”. Men do not have a say about how you may or may not feel. Remember you are not the only person in the world that is feeling what you are feeling, if you need support don’t be afraid to go looking for it. You are a Warrior.” – Nikita Theresa Bunce
Despite the frustrations, these women are uniting to make a difference, and a difference in South Africa is what we need! If you want to join this growing community, you can do so on Facebook here.
by 