The first sign that her menstrual cycle was going to give April Christina Alexander a world of trouble hit when she was just 14.

That’s when the woman, who goes by April Christina and who would become a top endometriosis beauty blogger and Instagrammer, got hit with cramps so bad she could barely leave her bed. Her friends, some of whom were just starting to get their periods even though Christina had already had hers for five years, didn’t understand her problem.

And for many years, neither did Christina.

A Long-Delayed Endometriosis Diagnosis

Endometriosis is an often-painful condition in which endometrial-like tissue grows outside the uterus. The tissue can grow on other organs, such as the ovaries, fallopian tubes, bowel, or outside of the uterus. In unusual cases, it can end up as far as the lungs and kidneys. Significant pain and complications can occur when the displaced endometrial tissue begins to shed with each menstrual cycle.

Each woman has a different experience, but common symptoms include heavy or painful periods — either dull or stabbing — as well as breakthrough bleeding, fatigue, and gastrointestinal symptoms, amongst others.

No one in Christina’s family was familiar with this condition, and her pediatrician — and later her gynecologist — never told her that her unbearable menstrual cramps might be from this.

When she was 18, another symptom replaced the abdominal pain: throbbing in both her upper thighs, which would linger for a few days each month, debilitating her.

“When I would see a doctor, I would describe it as like having a migraine in my legs,” Christina recalls. Suspecting possible blood clots, various physicians ran numerous tests, including computerized tomography (CT) and magnetic resonance imaging (MRI) scans, which were negative.

Christina’s ethnicity as an African American woman added an additional barrier to her diagnosis. In comparison with some ethnic groups, African American women are at an increased risk for developing uterine fibroids, which doctors mistakenly blamed for her pain.

By the time she was in her early twenties, the abdominal cramps had returned, and chronic back pain soon followed. Christina still had no idea what was causing the monthly misery that was ruining her work and social life.

Coping by Powering Through Each Day, Despite Pain and Other Symptoms

“In the beginning I was really depressed, because I couldn’t function like someone my age should. And I felt isolated, because my friends didn’t know what to do to help me,” Christina recalls.

Friends would invite her to movies, the mall, or out to dinner, but Christina frequently declined. When her leg pain struck, she couldn’t drive, let alone enjoy being social. “I missed a lot of things,” she says. She often censored herself around her friends, not discussing what was really going on in her life. Christina also took a part-time job rather than work full-time, so she could create a work schedule around her cycle, staying home on days she knew she’d be in agony.

People cope with chronic illnesses in all kinds of ways. For Christina, she buried the hurt and loneliness she was feeling from both her suffering and the inability to share her experience with others, and just powered through her days. It was the only way she could get through them.

“I became numb physically and emotionally to the pain. I just kept moving forward, building the mindset that I wasn’t going to think about it until something happened to change it,” she says.

A Chance Encounter Led to a Correct Diagnosis

Then, nine years ago, Christina had a chance encounter that changed her life. She was working in the hospital as a certified nursing assistant, and one of her patients happened to be a gynecologist.

“I told her, ‘I know I’m here to take care of you, but I have to talk to you about something,’” Christina recalls. When she mentioned the “leg migraine” and back pain that accompanied her cycle, the doctor immediately suggested endometriosis.

Despite being debilitated by it for 11 years at that point, Christina had never heard of the condition. She immediately switched to this physician, who facilitated her diagnosis.

RELATED: How to Find an Endometriosis Specialist

Navigating an Endometriosis Diagnosis

Christina finally allowed herself a little hope that her life could be more like that of her friends. But it actually took a long time for her situation to improve. That’s because her first surgeon did the exploratory surgery necessary to confirm her diagnosis (the only way endo can officially be identified) but didn’t also excise any of the troubling tissue. Another suggested she take expensive drugs, but she worried about side effects. She demurred.

Eventually, Christina, who lives in Copiague, New York, and now works in administration in a hospital there, found a surgeon she trusted to help. He recommended a dietary regimen some believe improves endometriosis — including eliminating soy, gluten, dairy, and meat — and told her the leg pain had been caused by scar tissue pressing on nerves running into her legs.

“I cried when he said this — that someone finally could explain it. I felt relieved and grateful,” Christina says. Soon she had a seven-hour excision operation, where endometrial-like tissue was removed from as far away as her bowels.

Related: What Is Bowel Endometriosis?

Finding Her Tribe Changed Her World

Now she finally had a diagnosis and the potential to feel better, but Christina still had no one she could talk to and felt increasingly isolated. Desperate for a support group and other women to relate with, she traveled monthly for a year to the only group available at the time, located in Connecticut some two-and-a-half hours away. The first time she attended, surrounded by women also munching gluten-free cookies and drinking almond milk, who hugged her and allowed her to express her fear, anger, and hopefulness, she was overwhelmed.

“It was a whole different world of sisterhood for me,” Christina says.

A year later she felt brave enough to form her own support group closer to home. Christina began sharing her story on her Instagram, @iamaprilchristina, and began writing a blog, EndoNMe.

Christina’s inspiration for naming her blog stemmed from her gratitude for finally having a diagnosis. She wanted her online presence to embody both her advocacy for endo and equally acknowledge her life apart from this chronic condition. Her tagline: “I have endo, but it doesn’t have me.”

“Because I was not heard for so many years, it was so important to me to claim my own voice, and to let others find theirs,” she says.

Becoming an Endo Warrior and Health Advocate

Christina has been so active in advocating for others with that she was recently named an “Endo Hero of the Year” at the 2018 Endo March in San Francisco.

She’s since changed her blog's name to "ImAprilChristina" (with her new tagline, “Finding purpose from your pain”), but her passion for making space for women with the disease shines as brightly as ever. At press time, she had over 4600 followers on Instagram.

In March 2019, she hosted her first Endo Brunch, to further extend her community of endo sisterhood. The event reached its 25-women maximum just two weeks after she announced it. She plans to make this an annual event.

Turning Endometriosis Pain Into Purpose

Looking back, Christina is proud of how she managed through all the years of suffering with an undiagnosed condition nobody around her understood. She feels she couldn’t have coped any differently, swallowing her feelings and words and just putting one (achy) leg in front of the other.

But she doesn’t want others to experience the loneliness and silence she did. Whatever direction life takes her next, she’s clear it will involve creating space to let other women with the disease speak their reality.

“To go from having no voice, because my condition wasn’t diagnosed for so long, to using my voice to influence others, is amazing,” she says. The women who follow her blog and posts and have come to her events would no doubt agree.

How a Delayed Endometriosis Diagnosis Helped One Woman Find Her Voice