From Silence to Advocacy: How One Woman’s Pain Became Malaysia’s Voice for Endometriosis Awareness

In a country where menstrual health conversations remain largely taboo, Surita Mogan transformed her personal struggle with endometriosis into a national movement. Since founding the Endometriosis Association of Malaysia (MyEndosis) in 2013, she has worked tirelessly to break the silence surrounding a condition that affects millions of Malaysian women, turning years of medical dismissal into powerful advocacy for change.

WORDS LIM TECK CHOON

FEATURED EXPERT SURITA MOGAN  Founder and President Endometriosis Association of Malaysia (MyEndosis) Website | Facebook | YouTube | Instagram

When Surita Mogan first experienced the debilitating pain of endometriosis in 1994, she found herself navigating a healthcare system unprepared to take her suffering seriously.

In a situation that is unfortunately common experience for many women across Malaysia, she encountered the dismissive response that period pain is simply normal — a narrative that would fuel her determination to create lasting change.

“As an endometriosis patient, I was unable to receive the emotional support that I needed while facing this debilitating illness,” Surita recalls. “Back then, there was little or no conversation about endometriosis in Malaysia. Women in Malaysia suffer in silence, often being told that period pain is normal.”

PERSONAL EXPERIENCE AS A CATALYST FOR CHANGE

This personal experience of medical gaslighting and isolation became the catalyst for establishing MyEndosis, officially known as the Endometriosis Association of Malaysia.

What began as a small initiative has evolved into a nationally recognized association that now stands at the forefront of endometriosis advocacy in Southeast Asia.

The journey was far from straightforward. Surita faced significant resistance from multiple fronts — healthcare providers who lacked awareness about the condition, a society that viewed menstrual discussions as taboo, and even criticism from other women who feared that highlighting menstrual pain might undermine broader gender equality efforts.

“One of the biggest challenges was the lack of awareness — not just among the public, but also within the medical community,” she explains.

“Talking about menstrual health was often seen as taboo,” she elaborates. “We also experience criticism from other women who think encouraging menstrual pain conversation is a step backwards when women are still fighting for equality at work and within the community.”

SETBACKS FUEL THE DETERMINATION TO FORGE AHEAD

Despite these obstacles, MyEndosis began finding its footing with modest but meaningful steps.

The organization’s first awareness event took place in a café in 2014, followed by an endometriosis workshop at a private university.

These early initiatives marked the beginning of a gradual shift in how Malaysian society approaches menstrual health conversations.

Today, MyEndosis operates with a clear three-pronged mission:

• Raising awareness and education
• Providing support and resources for patients
• Advocating for better healthcare policies and training for healthcare professionals

The organization has successfully positioned itself not merely as a support group, but as a policy influencer working to address systemic issues in endometriosis care.

AN APPROACH FOCUSED ON A WOMAN’S LIVED EXPERIENCES

The association’s approach is distinctly patient-centered.

“We at MyEndosis prioritize patients and we listen to them first,” Surita emphasizes. “Their lived experiences guide our initiatives, whether it is through focus groups, patient surveys, or direct conversations. From there, we channel their needs into programs such as awareness campaigns, patient workshops, and advocacy dialogues with policymakers.”

This patient-first philosophy has translated into innovative programmes that address various aspects of endometriosis support.

Beyond traditional awareness campaigns, MyEndosis has launched EndoBrothers, a groundbreaking initiative led by Zachary Roland that recognises the critical role men play in supporting women with endometriosis. The programme’s first physical event in May marked a historic moment in Malaysia, demonstrating that endometriosis advocacy transcends gender boundaries.

The organization has also ventured into workplace advocacy, engaging employers in discussions about creating menstrual-friendly work environments.

This comprehensive approach reflects MyEndosis’s understanding that endometriosis affects not only individual patients but entire communities and support systems.

INTERNATIONAL RECOGNITION AND ACCLAIM

Surita Mogan’s leadership has gained international recognition as well. MyEndosis became a member of the World Endometriosis Organisation, with Surita joining the seven-member Steering Committee.

In May 2025, she presented at the WEO pre-World Congress meeting in Sydney, sharing Malaysia’s unique challenges and successes in endometriosis advocacy with a global audience.

FORGING BEYOND POLICY AND ADVOCACY

The organization’s impact extends beyond policy and advocacy.

Validation and Support

For many women, MyEndosis provides the validation and support that much of the healthcare system has failed to offer.

Through WhatsApp support groups, Facebook communities, and in-person workshops, the organization creates spaces where women’s experiences are heard and respected.

“There have been many moments that stand out, but one that stays with me is of a young woman who told me that after attending one of our events, she finally had the courage to seek reliable medical intervention and was correctly diagnosed after years of being dismissed,” Surita shares with us. “Stories like hers remind me why we do this work.”

Education and Awareness

The challenge of diagnostic delay remains significant in Malaysia, as it does globally, with patients often waiting six to eight years for proper diagnosis.

MyEndosis works to address this issue through education initiatives targeting both healthcare professionals and the general public, aiming to create an environment where women’s pain is taken seriously from the outset.

WHAT LIES AHEAD?

Looking ahead, Surita envisions MyEndosis strengthening its role in policy advocacy to ensure endometriosis is recognized as a public health priority.

The organization continues to push for systemic changes, including equal access to treatment, better training for medical personnel, and normalized discussions about menstrual health across Malaysian society.

MyENDOSIS: A TESTAMENT OF HOW A WOMAN CAN MAKE A DIFFERENCE

The transformation of MyEndosis from one woman’s personal suffering to national advocacy represents more than organizational success — it demonstrates how individual experiences, when channeled through determined leadership, can create meaningful social change.

For Surita Mogan, seeing women who once felt silenced now speak confidently about their pain and rights represents the most rewarding aspect of her work.

She reflects: “Knowing that MyEndosis has played a role in transforming silence into advocacy is something I carry with pride.”

As MyEndosis continues to grow and evolve, its foundation remains rooted in the simple but powerful belief that women deserve to have their pain taken seriously and their voices amplified.

In a society where menstrual health conversations are still emerging from the shadows, this organization stands as proof that change is possible when courage meets determination, and individual pain transforms into collective action.