Sometimes the stories we revisit are the ones that remind us why speaking up matters.
When we first shared Elsie Wandera’s story in 2025, she was already doing much more than managing her own endometriosis journey. As founder of the Endometriosis Foundation of Kenya, CEO of Heroes for Change, and a Steering Committee Member of the World Endometriosis Organization, Elsie had turned years of pain, unanswered questions, and missed opportunities into advocacy for women who were still suffering in silence.
Her story leaves us with lessons that extend far beyond endometriosis.
1. Don’t normalize pain that is disrupting your life.
Elsie began experiencing menstrual pain at 13. By 15, the pain had become excruciating, affecting her school attendance and eventually her working life.
Yet people around her questioned whether the pain was real.
Her experience is a reminder that debilitating pain should not simply be dismissed as “normal period pain.” You deserve to be heard when you say something is wrong.
2. A diagnosis can bring answers—and still leave you with questions.
When Elsie was finally diagnosed with endometriosis at 26, she was relieved to finally have a name for what she had been experiencing.
But that relief quickly gave way to fear when she learned there was no cure and that the condition could affect her fertility.
A diagnosis isn’t always the end of uncertainty. Sometimes, it is the beginning of learning what questions to ask. Don’t be discouraged when an answer you desperately need leads to more questions. It is a starting point.
3. You deserve to understand your options.
One of the most powerful reflections in Elsie’s story came years after her diagnosis.
She was told she should become pregnant soon because endometriosis might affect her ability to have biological children. But she wasn’t given a full conversation about the options available to her.
Looking back, she said:
“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.”
Information matters.
Women cannot make informed decisions about their bodies, fertility, or futures if their options are never presented to them.
4. Your personal struggle can reveal a larger problem.
Elsie eventually realized that what she was experiencing wasn’t only her story. There were countless women experiencing similar pain without knowing what was happening to their bodies.
That realization became a turning point.
“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.”
Her decision to speak publicly about her experience eventually led to the creation of the Endometriosis Foundation of Kenya.
5. Your setback doesn’t have to be the end of your story.
Elsie reflected on the opportunities she believed she had missed because of her health.
“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.”
There is something powerful about realizing that the chapters where you felt limited do not have to determine what comes next.
6. Advocacy begins with refusing to stay silent.
Elsie could have kept her story private. Instead, she shared it—and that story sparked conversations, awareness, an organization, and advocacy.
Her journey demonstrates how personal testimony can become a catalyst for collective action.
Today, her work focuses on education, support, early diagnosis, healthcare access, and policy.
As she put it:
“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.”
7. You have a right to quality care.
Perhaps one of the strongest messages from Elsie’s story is also one of the simplest:
“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.”
That is a lesson worth revisiting.
You should not have to prove that your pain is real before you are taken seriously.
And sometimes, the person who has lived through the struggle becomes the person determined to make the road easier for the woman coming behind her.
Read the full story: Endometriosis Foundation of Kenya Founder Shares How Her Endo Journey Sparked National & Global Activism.
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.