• Say diagnosis is not death sentence, as ESIF marks 7th year
By Sola Charles
For seven years, a group of women have joined forces to fight Endometriosis - a chronic and often painful condition that affects an estimated one out of every 10 women of reproductive age.
In the Endometriosis & Adenomyosis Patient Support Group hosted by EndoSurvivors International Foundation (ESIF), there is a sanctuary where women battling the condition share their journeys, provide educational and psychosocial support to one another, raise awareness, celebrate their victories, advocate for better care, and find solace in solidarity.
Endometriosis is common among women in Nigeria, presenting with symptoms like severe menstrual pain, heavy bleeding, bloating, nausea, and infertility.
The courageous women who gathered to mark their milestone as an advocacy group, each had a story of pain laced with resilience and a spirit that refuses to be broken, spoke in Lagos during the 2025 end-of-year get together and 7th anniversary activity.
Personal stories
Leading the conversation, the Executive Director and Founder of EndoSurvivors International Foundation, Mrs. Olivia Nwankudu chronicled their personal and collective journeys through endometriosis.
“It's been an interesting journey. This support group started as my own response to what I suffered after getting diagnosed with endometriosis.
“There was nobody to talk to about it or to really ask questions, so I just wrote something on Facebook and many people responded, sharing their own stories.
“I was surprised at the number of responses because I had been told that endometriosis is rare among Nigerian women; following this I created an EndoSurvivors Support group on Facebook which caters to everyone affected [by] or interested [in] endometriosis. Shortly after, we were to have an Endometriosis Symposium in 2018 and some patients were to speak on a panel so I created a WhatsApp group to share information with the panelists - that WhatsApp group has grown into the thriving Patient Support Group today.”
Endometriosis mainly affects the pelvis, but can also impact other body parts, disrupting daily functions and mental health. Women with the condition experience pain as a result of tissue similar to the lining of the uterus growing outside the uterus, causing inflammation, scarring, and adhesions.
Another member, Temitope opened the gathering with a touching story that resonated deeply, narrating how a simple introduction revealed the profound unity within their families and support network. She said it all began in her teenage years, when she faced an unexplainable situation.
"I had a 14-day heavy period, and I didn't know what was happening. My mother comforted assured me that it was normal, yet the pain and inconveniences persisted.”
Marriage brought new challenges when she learned she had fibroids, underwent surgery, and believed her health woes were behind her.
New challenges
“But the pain returned", she continued. "Relentless and unyielding, my abdomen swelled and darkened. During a scan, and examination, the diagnosis became clear: endometriosis. It is a condition that I never thought I would have.”
Recalling that her journey was marked by numerous interventions and surgeries, moments of despair, and fleeting hope, she recalled: "I almost lost my life during IVF treatment, through faith and the support of loved ones, I kept fighting, I believe in miracles. One day, I will be fully healed," she said softly.
Not a death sentence
Olivia continued, “I want to encourage every one of you and let you know that a diagnosis of endometriosis is not a death sentence - as difficult as it is. By God's grace, we will thrive and we will get better. Work with an endometriosis specialist and seek new treatments if you have to. Find what works for you and stick with it".
Another member of the group who spoke up recounted the hidden pain, and struggle, her story woven with silent tears.
“After multiple surgeries, it was discovered that my internal organs were severely frozen together in a painful, unyielding grip of the endometrial growths. Sometimes I felt pain in my eyes, in my back, all over my body, it was worrying, and I wondered if I'll ever be free from this."
Her voice carried the weight of unspoken pain-pain that many women hide behind closed doors, yet her faith remained unshaken.
Yet another speaker recalled the agony of losing a pregnancy at seven weeks, despite believing she had conquered her fears.
"I questioned God, and wondered why I was going through this, but amid sorrow, I found strength in faith. God knows what He's doing. I am grateful for the children I have, and I trust that brighter days are coming."
Message of hope
There were more stories, all chronicled resilience, woven together by a community that refuses to be defeated.
Each woman's story is an inspiration to others to hold on, to participate, and to believe that healing of the body and the soul is possible.
"A diagnosis of endometriosis is not a death sentence, we will thrive, and we will heal. Don't give up," Olivia asserted.
With a common goal and shared memories the endo- warriors remain resolute.
Endometriosis has no known cure and carries significant health, social, and economic challenges, often leading to stigma and isolation.
Treatment focuses essentially on symptom management through medication, surgery, fertility options, physiotherapy, and hormonal therapy.
Increasing awareness, reducing stigma, and ensuring fair access to diagnosis and treatment are vital for improving the quality of life for women with endometriosis.
The event shone a spotlight on the heroes-individuals and organisations whose dedication has shone like a guiding light; and awards were given to the most outstanding. From volunteers to advocacy groups, each recipient was celebrated for their courage and commitment.
"The support group exists because of brave souls who dared to stand up, your stories and participation have made an indelible impact.
"The next seven years will bring more breakthroughs, more impact, more children, more love, more of everything that makes life worth living. With continued strength, understanding, and compassion, we will win this fight", Olivia added.
One of the participants summed up this way: "We are not just survivors; we are warriors. Together, we will conquer.”
ESIF has helped over 3,000 endometriosis patients and caregivers by providing counselling, educational, psychosocial and financial support, while connecting patients with endometriosis experts in Nigeria - all at no cost to beneficiaries.
The EndoSurvivors' Endometriosis Support Group has members dispersed all over the country, in the US and UK. The Annual Hangout/7th Anniversary event was held in Abuja and Port-Harcourt at the same time with the Lagos event.
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