Local NGO educates women on endometriosis
The organisation believes there is still a taboo surrounding the disease and more people should be made aware of it.
Women of Worth recently held its third endometriosis awareness campaign on Sunday in Saulsville to educate women on the seriousness of the condition.
According to the World Health Organization, endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and make it harder to get pregnant. Endometriosis can start at a person’s first menstrual period and last until menopause.
The event closed off Endometriosis Awareness Month in March at the Kingdom Life Child and Youth Centre in Saulsville, Pretoria.
The day consisted of a fun walk and awareness session. The entry fee was a pack of sanitary pads. Attendees also wore yellow ribbons and tutus to show their support for women living with endometriosis worldwide.
Founder Innocentia “Fhulu” Rambau said that the NGO was founded in 2019 to help develop women before incorporating youth development.
“I realised that there are many people that don’t know what endometriosis is and felt it’s something important to talk about as it affects a lot of people,” Rambau said.
Rambau herself was diagnosed with endometriosis in 2016 when she was 36 after beginning her cycle at 13.
“I’ve had it all along and I did not know even though I was going to doctors and being misdiagnosed regularly. When they diagnosed me, it was already too late. It was on stage 4 already. It comes with this chronic pain, mainly from the uterus but it spreads to other organs outside of it.”
“It causes chronic pain, fatigue, heavy bleeding during my period and excruciating pain that doesn’t go away even when I take pain meds. Sometimes you pass out and the only help you can get is if you go directly to the casualty unit for a drip or pain meds,” she said.
Rambau said that she struggled with fertility as well. After repeated visits to doctors and gynaecologists and being told she was fine, she was still unable to bear a child.
It was only when she went to a specialist in 2018 that she found out that her endometriosis had worsened, spreading to the bladder, which was the reason for her chronic pain and inability to conceive.
“I was broken but I decided that I had to try anyway. I did IVF and went for fertility procedures but nothing worked. The thing with endo is that they can only see it when they take you for surgery to remove it but it grows back every month.
Even now, the last operation I had was in September so, at the back of my mind I know one day the pain is going to come back, it keeps spreading and there’s no cure.”
Rambau said parents should dismiss period pain, heavy bleeding, brain fog and fatigue as normal during menstrual cycles but take their daughters to specialists to ensure that they don’t have endometriosis before the condition worsens.
Painful intercourse is another symptom of the condition.
“We compiled some pamphlets and did a walkabout handing them out to people in the streets. Sometimes people won’t come when we’re doing an event like this so we went to them. If we hand them to 10 people, five throw them away and the other five read, it matters. Let’s spread the information as a closed event defeats the purpose,” she said.
Other activities that took place during the event included:
– A drama by Hana Hearts
– Violin performance by the kids from Kingdom Life Child and Youth Centre
– Together Mzansi did a haircut drive for all the kids
– Face painting for all the kids
Women of Worth is planning a hike for Mother’s Month in May in the Hennops and another event for elderly women in August.
“You are not alone. Even if they say there is no cure it is possible to live with it and manage it. We have to take our treatment and watch the foods we eat because there are certain ones we shouldn’t. We are a community and let’s stick together,” Rambau urged other women living with endo.
Attendee Teleni Magoro, said that the event went a long way in helping spread the message.
“Now people know what we are about and what we are talking about, we are expecting more people to come next time. We are also expecting more women living with endometriosis to come forward and talk about it. We found that people don’t talk about it on this scale. They’d rather do it one-on-one, which means there’s still a taboo. This event lets women know they are not alone,” Magoro said.
Another attendee, Bontle Amanda Chauke, said that the event had brought about a sense of renewed hope.
“The event also served to provide support and solidarity to those affected by the condition and empower individuals to seek proper diagnosis and treatment for their symptoms. Ultimately, the endometriosis awareness event played a crucial role in increasing visibility, recognition and access to care for individuals in the community,” Chauke said.
Younger attendee, Amu Mahwayi stated that younger women are scared to talk about their experiences with the condition, especially with their parents.
“I feel that we need to be more open with our body experiences and talk more to our parents, visit clinics, read more and get diagnosed by the doctor,” Mahwayi said.
To get in touch with Women of Worth or for more information contact Innocentia Fhulufhelo Rambau on 079 517 6806 or visit Facebook, Inno Fhulu Rambau or TikTok, fhulurambau1.
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