Online Community Helps Women Suffering from Endometriosis

Through the online community she has formed and fostered, Elsie Wandera-Odhiambo is changing how women’s health is viewed and addressed. She offers both information and support for those suffering from endometriosis — a condition that affects more than 170 million women worldwide.

“I want to help women not feel like they’re the only ones who should carry that burden of what they’re going through,” she says.

Video Transcript

Meet Elise Wandera-Odhiambo: Women’s Health Activist
Nairobi, Kenya

(Melancholic piano music)

Elsie Wandera-O: When I first went public, it was — at first I was afraid because I was like, first I’m talking about something very private. So I felt very naked — you know, exposed. But my pain is valid, and so if I’m helping someone else even just not feel alone, for me I was like, it’s worth doing it. It’s worth doing it.

Elsie has battled endometriosis for 23 years.

I started by creating a Facebook group, and it had to be closed. And the reason for that is because there’s a taboo around having conversation about menstrual hygiene health issues.

The condition causes extreme period pain every month.

Because of that, it becomes hard for women to come out and really talk about their issues and that’s why we say that there are a lot of women who are suffering in silence that we don’t know. So it was really — I feel like it was a bold step to get these women out. 

Endometriosis affects over 176 million women worldwide.

I want to help women not feel like they’re the only ones who should carry that burden of what they’re going through, but just know that they have support. And to de-stigmatize period pain and the narrative around women who suffer with period pain.

(Elsie speaking in an auditorium to a large audience)

As a result of all the three surgeries that I’ve had, it impacted my ovarian reserve, and I remember… 

(Sighing)

Give me tissue? I remember this was, like, four months to my wedding, that… 

(Melancholic music)

(Woman brings Elsie a tissue)

You know, four months to my wedding and — you know… 

(Woman puts her arm around Elsie)

Today, more and more, I’m more courageous. Why not? Why shouldn’t I talk about my health and the issue that I’m going through? 

Elsie’s online community now supports thousands of women.

I believe by having the conversation, I will have improved people’s understanding of what endometriosis is, and for the women who suffer with endometriosis, how they can manage it better.

We don’t give medical advice, we usually just point people to the doctor and that’s usually our role.