Elsie Wandera is the founder of the Endometriosis Foundation of Kenya, CEO of Heroes for Change, and a Steering Committee Member of the World Endometriosis Organization. How she juggles all these roles is a testament to the shero that she is.
“It can be difficult juggling all these different initiatives,” Elsie told The Weight She Carries, “but they revolve around empowering individuals, which I’m passionate about, so it doesn’t feel as strenuous.”
Advocacy has always been a draw for Elsie. Growing up, she wanted to be a lawyer.
“There was a relative of mine who was around me, and I loved her passion and her fire,” she said. “She carried herself with such confidence and authority that I knew I wanted to be like her.”
Something about arguing cases and being a key player in legal proceedings was alluring. Watching legal dramas on TV further fueled this desire. Lawyers were tough and carried themselves with such dignity and distinction.
“I didn’t become a lawyer, but there is definitely an activist in me,” she said. “I love fighting social injustice.”
The path to becoming an advocate was not what she envisioned. When she began her menses at 13, Elsie experienced some menstrual pain. By the time she was 15, the pain was excruciating.
“It impacted my class attendance. I remember, clearly, other girls saying I was faking it, trying to get out of extracurricular activities or avoiding class assignments.”
The pain progressed. This was all temporary, she was told. The pain would go away when she conceived. It was a glimmer of hope that she held on to. But as the years went by, her symptoms worsened.
Life went on. The only difference was that instead of missing school, Elsie was now missing work. Whispers began to circulate around the office.
“‘What kind of pain are you experiencing that the rest of us are not going through?’ some female colleagues would ask. I felt like that was a very unfortunate thing to say, and it saddened me,” she said.
The diagnosis finally came when Elsie was 26 years old.
Endometriosis.
“I remember not understanding what the doctor was saying,” she said. “He told me that the easiest way for me to describe the disease was that my uterus was growing inside out. ‘Tissue similar to the lining of the uterus that sheds every month is growing outside of your uterus,’ he said. I wasn’t sure what to do with that information. I was excited to have a name for the issue, but knowing that there was no cure crushed my heart.”
“Society has normalized period pain. A lot of girls are walking around believing that it’s normal for them to experience this debilitating and almost crippling pain that interrupts and disrupts the quality of their lives.”
On average, it takes about eight years for a woman to be diagnosed with endometriosis, Elsie said.
And there was something else…
“He told me that I needed to get pregnant soon because endometriosis might rob me of the opportunity of becoming a mother.”
At the time, Elsie was dating a man she believed was her forever guy. They were serious and in love, but the pressure to begin planning for a family proved to be too intense, and the relationship suffered.
“I wish I had a therapist to help me process the diagnosis. I wanted a child at that time because I didn’t want to miss out on becoming a mother.”
“In hindsight, I understand what the doctor was saying, but he didn’t walk me through my options. Now I know that we could have had the conversation around IVF or freezing my eggs. At the time, I didn’t know these were an option for me because it was never brought up.”
Elsie said that one of the lesser-discussed options is adoption. It’s hard to know what local adoption rates are within individual African countries because adoption studies on African children generally focus on international adoption. But from a medical and cultural standpoint, adoption should be an option presented to endo-warriors.
“If I’m not able to conceive and deliver biological children, I should be able to adopt,” Elsie said. “That should be an option. We should explore how we can educate the public to embrace adoption and not demonize a woman for considering it.”
A study shows that endometriosis costs the US economy $119 billion due to a loss in productivity. One in 10 women and an estimated 200 million women around the world suffer from the disease.
“This number is enough to form the eighth-largest country in the world,” Elsie said. “When you put that data in front of people’s eyes, that’s when people begin to realize how much of an impact endometriosis has collectively.”
Elsie had a total of four surgeries, two of which she had to pay out of pocket.
“Insurance companies are not going to cover conditions like endometriosis because they are chronic, recurring, and considered pre-existing. That language is what we need to address from a policy level and then at a national level,” she said.
The surgeries recommended to treat endometriosis are expensive, and so is the prescribed medication to suppress estrogen hormones. Elsie explained that insurance companies generally do not cover the medication because it is considered fertility treatment.
“I know I missed out on opportunities to progress in my career. At the time, I felt some opportunities were too big for me to go after, but now I know that anything is possible. Look at me now.”
When prepping for her second surgery, the then 35-year-old Elsie reached a tipping point of frustration. There had to be a solution. She started doing more research on the disease and discovered that there was no advocacy organization in Kenya for endometriosis.
“I wanted to advocate for the voiceless. I told myself that there’s a woman who is sitting somewhere in silence, suffering, and cannot even verbalize what she’s going through. She doesn’t know the name of this condition. I’ve got to help her.”
Elsie shared her story on Facebook, and the response was overwhelming. That was the beginning of the Endometriosis Foundation of Kenya.
Ten years later, the foundation has made strides in educating the public and supporting women with endometriosis. Today, Elsie and her team advocate for better healthcare access, provide support to women suffering from the condition in Kenya, promote early diagnosis, and influence policy to enhance treatment options.
“Raising awareness opens up opportunities for conversations with different stakeholders, especially in the healthcare sector. We are better than where we were, but we’ve barely scratched the surface.”
Ways that you can participate:
- Educate yourself to understand how endometriosis may be impacting the women around you.
- Advocate for increased government funding for research and to ensure that healthcare facilities around the country have the manpower, equipment, and resources to treat and care for women and girls who have endometriosis.
- Address taboo topics surrounding the whole menstrual health space, like period poverty.
“I’m going to make sure that women know they have a right to speak up about their pain and seek a second or a third opinion. They have a right to care, not just care, but quality care. And I want them to know that I believe them.” – Elsie Wandera
On March 29, 2025, the Endometriosis Foundation of Kenya will host a day of awareness, education, and advocacy in collaboration with Aga Khan University Hospital. For more details, visit www.endofoundke.org.
Vimbai E. is a content marketer, ghostwriter, and the founder of The Weight She Carries. With hundreds of articles and stories publishing online, in print and for broadcast, her love of language and storytelling shines through every piece of writing that bears her name.