Shontae’s Story: Endometriosis, IVF, and the Strength to Keep Going

"However despite how severe it gets, life doesn’t pause & I feel a strong need to push through because daily responsibilities don’t stop."

What does it feel like to live with pain that no one else can see? To carry a diagnosis that changes everything about your body, your future, and how you see yourself—yet remain invisible to most?

For Shontae, Stage 4 Endometriosis isn’t just a medical term. It’s a daily reality of crippling pain, uncertainty, and heartache. It’s the loss of pregnancies and the slow, difficult journey through infertility and IVF. But it’s also the story of resilience—the fierce determination to keep moving forward, to raise her voice, and to refuse to be defined by her illness.

This is Shontae’s story. Not just about disease, but about strength, hope, and the power of making invisible pain visible.

How I Found Her: Instagram scrolling

One day, as I was scrolling through my Instagram suggested accounts, I came across Shontae’s profile. I’d been searching for voices to share—especially those living with invisible illnesses that often go unnoticed or misunderstood.

At first, I wasn’t sure if she’d respond. With over a thousand followers, I figured she probably gets lots of messages and might not have time to reply to a stranger.

But then I started reading through her comments. The way she lifts up her followers while openly sharing her own struggles—it felt different. Genuine. Compassionate. Real.

It was clear Shontae was already writing her story every day, using her platform to connect and support others. I realized I wasn’t asking her to start something new—I was just helping her share the journey she’s already bravely living.

Early Life and Growing Up with Invisible Pain

Looking back, Shontae isn’t quite sure when her endometriosis symptoms truly began. For years, she believed the heavy, painful periods she experienced were just normal.

“Looking back, it’s hard to pinpoint whether there were early signs of endometriosis. My periods have always been heavy & extremely painful, but I simply thought that was just normal period pain. I accepted it as part of the experience, without questioning it.”

There was no dismissal from doctors or family—just a lack of understanding, a gap in knowledge that left her alone with her pain.

“It wasn’t that my pain was dismissed or misunderstood. It was more that I had little education about the condition itself. I never knew that my ‘painful periods’ could have been a symptom of endometriosis.”

I can only imagine the confusion of feeling so much pain, yet not having the language or support to explain it. Like many, she simply endured, thinking it was something everyone had to face.

Shontae wasn’t officially diagnosed until she was around 17 or 18, but even then, the diagnosis didn’t change her day-to-day life overnight.

“Growing up with an invisible illness didn’t particularly shape my sense of identity. Even after my diagnosis, my understanding of the condition was limited, so life continued as it had before. I still dealt with the painful periods & simply accepted them as part of my routine, without fully grasping the impact of my diagnosis.”

Invisible illnesses carry a unique burden—the suffering is real, but the world rarely sees it. It’s a silent weight carried quietly, sometimes alone.

Living with Stage 4 Endometriosis

“Flare-up for me involves excruciating cramps, extreme fatigue & intense lower back pain,” Shontae shares, giving voice to the pain that so many might never truly understand. The physical agony she describes is almost unimaginable—the kind of pain that drains not just your body but your spirit. She explains that some days the cramps become so overwhelming she can’t even get out of bed.

“It’s draining—often leading to tears, as the pain can feel unbearable.”

Despite this, life keeps moving. The world doesn’t wait for her to heal, and she feels an unrelenting pressure to push through.

“However despite how severe it gets, life doesn’t pause & I feel a strong need to push through because daily responsibilities don’t stop.”

I picture the weight she carries—aching in her body and tugging at her emotions—while still juggling the demands of everyday life. It’s a constant battle to appear “okay” when inside, she’s anything but.

Shontae’s experience isn’t just about the pain. It’s about what it means to live with a disease that’s invisible to everyone but her. The exhaustion, the frustration, the loneliness of feeling unseen even while hurting deeply.

Her journey has also included emergency surgeries, moments where the severity of her condition demanded immediate attention but left her overwhelmed with fear and uncertainty.

“In relation to endometriosis, many of my surgical procedures have been emergency situations, which meant I received immediate attention due to the severity of my symptoms.”

She recalls the shock of being rushed into surgery with little explanation—an experience that left her feeling scared and uncertain.

“This experience has fuelled my passion to raise awareness about endometriosis, so others don’t have to go through the same uncertainty.”

Behind her strength is a deep well of courage born from pain and the desire to prevent others from suffering alone. The fear and confusion she felt in those emergency moments still linger, a reminder of how isolating and overwhelming invisible illness can be. Yet from that fear, Shontae has forged a mission—to turn silence into awareness, so no one else has to face the unknown without a voice.

Infertility and IVF Journey

Shontae’s path through infertility has been marked by heartache, resilience, and unwavering courage. When she was diagnosed with Stage 4 Endometriosis around her 30th birthday, the devastating news that she might struggle to have children shook her world. Told she had only a 25% chance of conceiving naturally, Shontae faced not only physical pain but the deep emotional toll of loss.

She endured the loss of her first two pregnancies—an unimaginable grief that would have broken many. On top of that, a severe medication reaction left her temporarily unable to use her hands, compounding the physical and emotional struggle. Yet, through every setback, Shantae found strength she never knew she had.

“My journey towards achieving IVF has been an incredibly challenging, yet deeply revealing experience, one that has taught me more about myself than I ever expected.”

What inspires me most is how she turns this pain into power—acknowledging her grief but refusing to be defined by it. She speaks openly about the importance of hope, even when the future feels uncertain, showing a bravery that lights a path for others walking a similar road.

Her partner has been an anchor throughout this journey—attentive, loving, and actively involved. “He’s always sensitive to my needs, whether it’s giving me space during a flare-up or offering a listening ear when I’m feeling down. He actively participates in my healthcare journey, attending specialist appointments with me, which helps ease the anxiety that often accompanies them.” His unwavering support is a testament to the strength of their bond and the power of partnership through hardship.

Understanding Stage 4 Endometriosis

Endometriosis is a chronic condition where tissue similar to the lining inside the uterus grows outside of it, causing pain, inflammation, and often infertility. It affects approximately 1 in 10 women of reproductive age worldwide.

Stage 4, also called severe endometriosis, is the most advanced form. It is characterized by:

• Extensive endometrial implants spread across pelvic organs

• Large ovarian cysts called endometriomas (sometimes called “chocolate cysts” because of the dark fluid inside)

• Dense scar tissue and adhesions causing organs to stick together

• Significant pelvic pain and impaired organ function

Women with Stage 4 endometriosis often experience intense pain during their menstrual cycle, chronic pelvic pain, and severe fertility challenges. The disease can affect the ovaries, fallopian tubes, bowel, bladder, and other nearby tissues.

Treatment for Stage 4 endometriosis typically involves a combination of surgery to remove as much abnormal tissue as possible and hormone therapy to suppress disease progression. However, even with treatment, endometriosis is a chronic condition with a risk of recurrence.

Shontae’s Message and Advocacy

Shontae’s journey has transformed her into a passionate advocate for women living with endometriosis and those navigating the often difficult road of infertility. She uses her platform not just to share her story, but to lift others up and shine a light on the realities many face in silence.

“What really gets to me, and something I wish people would better understand, is when they say things like, ‘But at least you can still get pregnant’ or ‘It’s okay, it’ll happen one day,’” she explains. “While these statements may come from a place of comfort, I’d love for people to realize that the struggles women face with fertility issues are far more complex and painful than they might assume.”

Her words reveal how deeply impactful well-meaning comments can be—and how important it is to approach fertility struggles with sensitivity. Hearing Shontae speak so openly about the emotional weight behind these words made me reflect on the power of empathy, and how crucial it is to truly listen rather than offer quick reassurances.

She also credits her partner’s unwavering support as a pillar in her journey. “He’s always sensitive to my needs, whether it’s giving me space during a flare up or offering a listening ear when I’m feeling down. He actively participates in my healthcare journey, attending specialist appointments with me, which helps ease the anxiety that often accompanies them.” Their connection is a reminder that navigating chronic illness is rarely a solo battle.

Shontae’s advocacy reaches beyond her personal experience; she has been moved by the stories of others, especially those facing financial barriers to IVF treatment. One woman’s story of taking out an additional mortgage to afford care resonated deeply, reinforcing the need for greater awareness and support.

At the heart of Shontae’s message is a call for compassion and education. “Living with endometriosis is so much more than just ‘bad periods.’ It’s a life-altering condition that impacts every part of daily life. I want people to understand that women dealing with endometriosis and other women’s health issues often do their best to push through because society expects them to. But behind the smiles and the strength, many women suffer in silence.”

Her words carry the weight of lived experience and a hope that through awareness, understanding, and community, the invisible pain of endometriosis can become visible change.

On the toughest days, Shontae finds light in her purpose. “On the days that feel especially heavy, I remind myself that my struggle might one day help other women. By raising awareness about endometriosis and showing people what it’s truly like to live with it, I’m shining a light on a disease that often goes unspoken.” Her resilience is a beacon for others walking similar paths, proving that even invisible pain can lead to powerful, visible change.

Sources:

American College of Obstetricians and Gynecologists (ACOG) — Endometriosis FAQhttps://www.acog.org/womens-health/faqs/endometriosis

Mayo Clinic — Endometriosishttps://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

National Institute of Health (NIH) — Endometriosis Fact Sheethttps://www.nichd.nih.gov/health/topics/endometriosis/conditioninfo

Endometriosis Foundation of America — What Is Endometriosis?https://www.endofound.org/endometriosis-what-is-it