Barbed Wire Inside: How Endometriosis Is Stealing Nigerian Women’s Years, Fertility, and Hope

Endometriosis is a silent crisis in Nigeria, where tissue similar to the uterine lining grows outside the womb, causing excruciating pain and infertility for 30% to 50% of affected women. Many endure 7 to 10 years of misdiagnosis because menstrual pain is often dismissed as “normal cramps.” In this report, ODIMEGWU ONWUMERE examines that survivors lost decades to pain, failed surgeries, and stigma before getting answers. Doctors frequently mislabel it as fibroids or pelvic disease, and gaps in training and equipment delay care. The condition affects 1 in 10 women globally and is a top cause of infertility by damaging fallopian tubes and egg quality. The article traces that while there is no cure, early diagnosis, laparoscopy, and fertility planning can help. The article suggests that advocacy groups are raising awareness, and corporate players like Nestlé are adding support through maternal nutrition programs, workplace wellness, and initiatives like Empowering Rural Women in Nigeria to improve health access and economic independence for women

She was fourteen when the pain started, and forty-three when anyone finally gave it a name. In between were three decades of missed school days, hospital waiting rooms, surgeries that left her without a navel, and a life plan that quietly collapsed because no one could tell her what was wrong. Her name is Patricia Raymond. Her story is not unusual in Nigeria. It is, in fact, the story of millions of women who have learned to call agony “normal.”

Endometriosis is not rare. It is not dramatic. It is quiet, persistent, and often invisible to everyone except the woman living with it. Medically, it is the abnormal growth of tissue similar to the lining of the uterus in places it does not belong. Instead of staying inside the womb, that tissue attaches to ovaries, fallopian tubes, the pelvic lining, intestines, bladder, and in severe cases, even the lungs or the liver. Every month, like the normal uterine lining, it tries to shed. But because it has no way out, it bleeds into itself, triggers inflammation, forms cysts and scar tissue, and causes pain that women describe in language most doctors have never heard from a patient before. One survivor likened it to someone taking barbed wire to her insides and twisting it for days.

In Nigeria, that pain is frequently dismissed. Menstrual cramps are treated as a rite of passage. “Bad periods” are joked about in families. Girls are told to endure. So they do, until endurance becomes a medical record. Estimates vary, but experts say between 30 and 50 percent of Nigerian women with endometriosis will face fertility problems. Another recent study suggests about 11 percent of Nigerian women and girls live with the disorder without knowing it, because symptoms are either absent or ignored and diagnosis only comes years later. Globally, the figure is one in ten women of reproductive age, roughly 176 million people. It is the second most common gynaecological condition in Nigeria, yet it remains one of the least understood.

The cost of that silence is measured in years. Diagnostic delays of seven to ten years are common here. Women are misdiagnosed with fibroids, pelvic inflammatory disease, or simply told they have a low pain threshold. By the time a laparoscopy confirms what is happening, many have already lost jobs, relationships, education opportunities, and in some cases, the ability to conceive without medical help.

In March 2022, Nollywood actress Yetunde Balogun broke that silence on Instagram. She posted a picture taken just after she noticed her hair falling out from treatment. “It took a lot not to burst into tears because I love my hair,” she wrote.

“To see batches of it in my hands stung. It still does but we’re gonna get it back.”

She had just been told she had Stage 4 endometriosis after more than twenty years of pain she once thought was normal.

“I was really happy to finally have an accurate diagnosis because it meant I finally knew the root of twenty something years of excruciating pain,” she said.

She described the condition plainly: tissue lining the uterus growing outside of it, lesions forming on lungs, intestines, ovaries, fallopian tubes and more.

One in ten women, she reminded her followers, live with it, and it still does not get enough attention or research.

Patricia Raymond’s experience mirrors that delay. Her first period at fourteen came with pain so severe she could not stand. She screamed when the pain allowed her. Sometimes she could not cry because she had no strength left.

The bleeding lasted two to three days, but the pain stretched for seven. She finished secondary school by missing a week every month while her classmates attended all four. She entered university in pain, wrote her final paper from a hospital bed, graduated, started working, and still did not have an answer. Doctors ran tests. One procedure was so painful she could hear other women wailing from the waiting room. Nothing showed up, because fluid had already taken over her abdomen. She was bloated, shrinking, down from 69 kilograms to 41. She could not eat. She could not drink. In 2003 she had her first surgery. It did not end the story. She went for another. She paid 45,000 naira for a city scan that found nothing because water masked everything. The surgeries took her navel.

“As I speak, I don’t have a navel because of endometriosis,” she said.

What remained was faith. “I lost everything that made me a woman,” she said.

“The only thing left for me is my faith in God. Nobody understood what I was going through.” Intimacy became impossible. Marriage did not happen. She lived on pain relievers and sleeping pills, but the pain woke her anyway. Doctors were clueless. Family members suggested wrong causes. By her early forties, she was still single, still searching, still bleeding, still in pain.

She is one of over 176 million women worldwide, but numbers do not capture the daily reality. Normal menstruation should not stop a girl from school, work, or life. When it does, that is the signal. In Nigeria, between 30 and 40 percent of women are estimated to live with endometriosis. Many only find out when they are married and trying to have children. That timing creates a particular kind of grief.

Gaona Dintwe from Botswana, who spoke at a Lagos gathering of survivors and doctors, started her cycle at fourteen too. She was told she had a sexually transmitted infection even though she had not had sex. Later, a doctor accused her of having an abortion because of heavy bleeding. She lived on drugs until she feared addiction more than pain.

“As I am sitting down now, I am in pain but I have to bear it,” she had said. She learned to ignore it. A friend pushed her to get tested. One fallopian tube was blocked. After surgery, doctors said pregnancy was possible. She conceived. There is no cure, she explained, only management. Early diagnosis makes that management easier.

The medical picture is stark. Endometriosis cells secrete substances that affect sperm and eggs. The inflammation can cause progesterone deficiency and prevent normal implantation. Implants are most commonly found on ovaries, fallopian tubes, the outer surface of the uterus, intestines, and the pelvic lining. Less commonly they appear on the vagina, cervix, bladder, liver, surgical scars, lungs, or even the brain. They are not cancer, but they are not harmless. They distort pelvic anatomy, scar fallopian tubes, alter immune function, change the hormonal environment of eggs, and impair implantation.

Dr. Abayomi Ajayi, a consultant gynaecologist and Managing Director of Nordica Fertility Centre, says up to 50 percent of women with endometriosis may experience infertility. At laparoscopy in his centre, endometriosis is the third most common finding, at 15.7 percent. Twenty-five percent of patients undergoing assisted reproductive techniques have endometriosis, and up to 40 percent of them show ovarian endometriosis. The condition can start at a girl’s first period. Menopause may not resolve it if scar tissue or adhesions remain. It is more common in women experiencing infertility than in fertile women, though it does not always prevent conception.

Symptoms are often mistaken for ordinary menstrual issues. Pelvic pain during menstruation or ovulation, fatigue, and painful sex are the main signs. A physical examination can raise suspicion, but surgery, usually laparoscopy, confirms it. That keyhole camera procedure is considered the gold standard. It also allows doctors to classify the extent of disease and take tissue for diagnosis. Treatment includes medication for pain and hormone control, and surgery to remove lesions or adhesions. For women who want children, mild to moderate cases may conceive on their own. If pregnancy does not happen after six to twelve months of trying, assisted conception, mainly in vitro fertilisation, may be needed.

Dr. Cynthia Okafor, a consultant surgeon and gynaecologist at a General Hospital, explains how the disease influences fertility. It can block tubes, scar organs, inflame pelvic structures, change immune response, alter egg quality, and prevent implantation. During surgery, doctors score the disease. Minimal is Stage 1, mild Stage 2, moderate Stage 3, severe Stage 4. That score correlates with pregnancy success. Stage 4, with heavy scarring, blocked tubes, and damaged ovaries, makes conception hardest and often requires advanced fertility treatment.

Medical therapy usually targets estrogen because endometriosis needs it to grow. Birth control pills and other drugs that lower estrogen can reduce pain, but they do not improve pregnancy rates for women trying to conceive. Surgery to excise cysts or tissue and remove adhesions is common. All surgeries can be done by laparoscopy or laparotomy. Hormonal drugs such as danazol, progesterones, oral pills, and GnRH analogues help suppress the condition. For mild cases, ovulation induction and intrauterine insemination may be considered. Otherwise, IVF is often indicated.

There are also lifeclass factors. Eating more trans fatty acids or drinking two or more cups of coffee a day may increase risk, though studies are mixed. Green vegetables, fruits, omega-3 fatty acids, and three or more servings of dairy daily may lower risk. Fish oil may reduce painful menstruation for some women.

Dr. Oluyemisi Famuyiwa, a medical doctor based in Maryland, explains it in everyday terms. The tissue that should shed during menstruation sometimes spills through the fallopian tubes, settles on the ovary, or invades the muscle of the uterus. When trapped in the ovary it bleeds into itself and forms a chocolate cyst, or endometrioma. When it invades the uterine muscle it is called adenomyosis, which may not be surgically removable. Theories for how it starts include retrograde menstruation, invagination, and de novo formation. The result is the same: tissue with no exit, inflammation, scar tissue, and a hostile environment for conception.

She warns that not every woman with endometriosis becomes infertile, which is fortunate, but some experience devastating infertility and emotional heartbreak. Many are diagnosed only after years of failed attempts to conceive. Mary, a 32-year-old teacher in Abuja, thought her pain was normal until it kept her out of work. After years of trying to conceive, a diagnosis finally gave her an answer and a fear: endometriosis could affect her fertility. She had laparoscopic surgery and is now on fertility treatment. Hauwa, a 28-year-old trader, said the emotional pain outweighed the physical. She did not know anything was wrong until two years of marriage without pregnancy led to tests. Support from her partner helped her through treatment.

In Lagos, survivors gathered at the Civic Centre with doctors from Nigeria and abroad to talk, to listen, and to be believed. For many, it was the first time they met another person with the same condition. “I have never met anybody with this condition,” Raymond said at the event. “If I had, maybe my case wouldn’t have been this complicated. Earlier, I thought I was alone in this condition but today, I feel better.” She asked for more such programmes for younger women.

Experts at the meeting called endometriosis an unrecognised burden in Africa. Ignorance, they said, is part of why it spreads. Many women and even some practitioners do not know it exists. Most cases are detected late, after marriage, when childbearing becomes urgent. Two advocacy groups, Endometriosis Support Group Nigeria and African Endometriosis Awareness and Support Group, have been formed in Lagos to change that.

Dr. Ajayi lists the main concerns: inaccurate diagnosis, too few trained personnel, and obsolete equipment. Life with the condition is unfair, he says. The pain, the choices about children, sexual life, relationships, and general wellbeing affect everything.

Dr. Abidoye Gbadegesin of the "Lagos State University Teaching Hospital", represented by Dr. Temitope Odetayo, told the conference that endometriosis affects girls and women of reproductive age. Dr. Dorcas Shonibare of the "Lagos State Ministry of Health" urged practitioners to work with focus groups and run education programmes. She said education, not income, is the best predictor of a long life, and that everyone has a role in awareness.

There is no permanent cure, but management is possible. Laparoscopy can remove large chocolate cysts. For women in their twenties or early thirties, Dr. Famuyiwa suggests fertility planning, including egg freezing before the condition affects egg quality and quantity. That option is expensive and not widely available in Nigeria, but it may offer hope to those who must delay childbirth.

The message to women is direct: do not ignore persistent or severe menstrual pain. If pain interferes with work, school, or daily movement, it should be evaluated. Pain is not a character trait. It is data.

Endometriosis remains hidden in many communities because menstrual pain is tolerated in silence and infertility is often blamed on spiritual causes. The medical truth is different. It is a reproductive disorder that can threaten the ability to conceive and carry a pregnancy. The good news is that many women still get pregnant with it, especially when it is found early and managed well.

Nutrition and corporate health programmes are also entering the conversation. Nestlé, for example, focuses on women’s health across life stages, from preconception to menopause, with brands like Materna, Nature’s Bounty, and Vital Proteins. The company works with organisations such as UNFPA, supports maternal nutrition, gestational diabetes management, and menopause research. In Nigeria, Nestlé also runs the Empowering Rural Women project, giving female traders business coaching and grants. Financial independence, the company argues, improves access to food, healthcare, and education. It also provides maternity support, childcare facilities, and lactation spaces for employees.

None of that replaces diagnosis. The gap in Nigeria is still clinical. Women need doctors who know what to look for, equipment that can see past fluid and scar tissue, and systems that do not make them wait a decade for answers. They need families and schools that do not tell a girl that fainting every month is normal. They need partners who do not leave when the pain does not.

Patricia Raymond decided to tell her story to help others and to push for on-the-job education for medical practitioners. She is still living with the condition. She is still without a navel. She may still be in pain. But she is speaking.

That is where change starts. With a name for the pain. With a doctor who listens. With a society that stops calling suffering normal. Endometriosis has taken years from Nigerian women. The question now is how many more it will take before silence is no longer the default response.

•Onwumere writes from Rivers State