Endometriosis unmasked: Foundation’s quest to shed light on a silent struggle

In a land where silence weaves a web around the secrets of women’s pain, one woman emerges as a beacon of hope, determined to unravel the mysteries of endometriosis, a silent and often-misunderstood malady that quietly plagues countless Nigerian women.

Olivia Nwankudu, the founder of a non-profit organisation, EndoSurvivors International Foundation, explains the journey into the shadowy realm of a debilitating condition. Her own odyssey began with a whisper—a whisper of pain disguised as mundane menstrual cramps. But this murmur grew louder as she aged, an insistent cry that led her down a labyrinthine path to seek medical solace.

“It got so bad that I had to see a doctor,” Olivia recalls, her voice quivering with the remembered agony. “Before that, I had consulted several general practitioners, but they only treated me for pain. It wasn’t until later in my twenties that I saw a gynaecologist who suspected endometriosis. The diagnosis, they said, required surgery, and it was during this procedure that I received the official, life-altering verdict.”

Imagine her, a young woman, on an operating table, her body laid bare, her secret pain exposed. It was a moment of raw vulnerability that crystallised her resolve. She realised that countless others across Nigeria were trapped in a web of silence, their stories locked away, concealed by the stigma and lack of awareness surrounding endometriosis. Olivia decided it was time to be the voice for those who couldn’t speak, to be the torchbearer through the darkness.

“So, shortly after the surgery, it was such a difficult situation because I was thinking to myself, what about other women that are dealing with it? What about other young girls that are just there suffering menstrual cramps and they don’t even know that something bad like this is actually waiting for them in the future? They don’t know because they cannot get diagnosed on time because there’s very little awareness about it. So, while I was preparing for that surgery, I just put up an article on Facebook and a lot of people then reached out to me that, well, they are dealing with this condition. So, that was how I started a support group. I started a support group on Facebook, Endosurvivors Support Group, that’s Survivors of Endometriosis and a lot of people joined and all that.”

With passion as her guiding star, Olivia founded the ‘Endosurvivors Support Group’ on Facebook. It was here, in the virtual embrace of kindred souls, that she first unveiled her mission to the world. But there was a catch; not everyone was ready to shout their pain from the virtual mountaintop. Some chose whispers in the dark.

As the group burgeoned, Olivia discerned a peculiar pattern—members hesitated to share their experiences openly. Their whispers lingered in the shadows of personal messages. To create a sanctuary where these hidden tales could find light, she conceived a WhatsApp support group, a clandestine haven where stories flowed like tears in the night.

She continued: “So, after a while, I found out that in that support group, people were not really talking. They would rather send me personal messages because people in that support group were not talking. Some people would then come to me and start writing about their experiences. I wanted those experiences to be shared on the support group rather than in my DM. I just thought I needed to get more private space for patients who actually want to share their stories. So, we now have a support group on WhatsApp. We have an endometriosis support group for patients who are dealing with this condition.”

Endometriosis, the enigmatic adversary, holds its secrets close. There’s no known cause, only theories. Olivia paints a vivid picture of the conundrum, her words dancing on the edge of emotion. “There’s no known cause. While whispers of genetics and the environment echo in the medical corridors, there’s no concrete proof to lift the veil of uncertainty. It’s a complex riddle, a puzzle that scientists continue to decode.”

But within the enigma lies an urgent truth—early diagnosis and management can alleviate suffering. Olivia’s organisation, EndoSurvivors International Foundation, stands as a beacon of hope in this darkness. “We can’t unravel the cause, but we can untangle the pain,” she declares, her words resonating like a rallying cry. “Our mission is to encourage early diagnosis and to pull back the shroud of silence.”

Since its inception of the organisation in 2017, it has carved a path through the dense forest of ignorance. Olivia enumerates their achievements with a heart full of hope. “We started with our support group and ventured into secondary schools, illuminating the minds of young girls about menstruation and endometriosis. In Nigeria, where girls begin menstruating as young as 12, knowledge is their greatest armour.”

Yet, even as they take strides toward enlightenment, hurdles lie ahead. Olivia acknowledges the uphill battle of raising awareness and funding in a country where endometriosis remains an unfamiliar spectre. “The challenges are real,” she says, her voice tinged with the weight of uncharted territory. “But we’re resolute in our commitment to banish the shadows shrouding endometriosis, to forge a path to early diagnosis, and to champion the cause of women’s health across Nigeria.”

Olivia’s journey is a testament to the power of one woman’s determination to illuminate the darkest corners of a silent struggle. As her organisation grows, we hope that more stories will find their way out of the shadows, bringing hope and healing to those afflicted by endometriosis in Nigeria.

Olivia acknowledges the difficulty of raising awareness and funding in Nigeria, where endometriosis is still relatively unknown. “Awareness and funding are ongoing challenges,” she says. “But we’re committed to breaking the silence around endometriosis, improving early diagnosis, and advocating for better healthcare for women across Nigeria.”

She continued, with her voice resolute, “That’s when you might even experience a little bit of relief during your period. But most of these, ovary painkillers, don’t work for endometriosis patients. So, you find that you cannot function when you are menstruating. That is a red flag.”

But she knows that in Nigeria, pain for women, especially during menstruation, is often dismissed. “Oh, okay, you are in pain, okay, it will go, when you stop, it will go,” she says, her voice laced with frustration. “This girl is rolling on the floor. We have people in the support groups that when they are menstruating, they go into the hospital.”

Olivia speaks of the darkest hours of endometriosis. “Some people with endometriosis will be throwing up when they are on their period. They will be too tired, unable to function or do anything. So, they just generally go to the hospital for that period, so that they can get the care that they need for at least two days or more, and then they go back home. That’s normal.”

In the hallowed sanctuary of the EndoSurvivors Support Group, stories of strength and suffering flow like rivers of shared pain. Olivia Nwankudu’s voice takes on a solemn tone as she delves into one particularly harrowing tale.

She recounts the story of a group member—a woman whose life had been forever altered by the relentless grip of endometriosis. This wasn’t merely a story of physical agony; it was a narrative of survival against an affliction that knew no boundaries.

“This woman,” Olivia begins, her voice trembling with empathy, “she had surgery. Endometriosis, you see, doesn’t discriminate. It’s not content with confining its pain to the reproductive system alone. No, it reaches out to touch other parts of the body, spreading its tendrils like a malevolent vine.”

As she speaks, Olivia’s words paint a clear picture of the woman’s suffering. “The disease had taken hold of her bowels, her lungs, her chest,” she continues. “It was as if the very essence of her being had been invaded by this relentless foe.”

She describes the toll this insidious condition exacted, her words heavy with sorrow. “Endometriosis doesn’t just cause physical pain; it exhausts you, weakens you. It steals your dreams and your vitality. It thrusts infertility upon you, casting a shadow over your hopes for a family of your own.”

She speaks with care, acknowledging the gravity of the situation. “Suicidal thoughts,” she says, “became an all-too-familiar companion for some who grapple with endometriosis. It’s not a willingness to end life, but rather a desperate yearning to end the ceaseless torment. A plea for respite from the relentless pain that visits them every month, like clockwork.”

Olivia’s words hang heavy in the air as she unveils the grim truth—endometriosis doesn’t abide by the boundaries of a monthly cycle. “For some,” she reveals, “the pain extends far beyond the confines of a menstrual period. It becomes an unyielding, ceaseless companion, a relentless ache that permeates every moment of their lives.”

As the story unfolds, Olivia’s voice carries the weight of compassion for those who have been pushed to the brink. “These are not stories of mere physical suffering,” she emphasizes. “They are tales of endurance, of resilience in the face of a foe that seeks to steal not just health, but hope.”

In the darkness that endometriosis casts, Olivia’s mission shines as a beacon of hope. Through the EndoSurvivors International Foundation, she is determined to bring these stories to light, to unmask the silent struggle, and to offer help to those who continue to battle the unrelenting agony of endometriosis.

Olivia Nwankudu’s passion for making a difference in the lives of Nigerian women and girls shines through her work with EndoSurvivors International Foundation. As the organisation continues to grow, it is hoped that more women will receive early diagnosis and support, ultimately leading to a brighter and healthier future for those affected by endometriosis in Nigeria.