Photos provided by Lisa; illustrations by Emma Günther
“It felt like my body was betraying me”: Lisa’s journey to an endometriosis diagnosis
“At first, I thought it was just normal period pain. But the agony I felt wasn’t something you could push through with a few painkillers. It was excruciating, radiating from my ovaries to my knees. I knew something wasn’t right.”
For Lisa, a 30-year-old Pilates instructor from South Africa, what began as unexplained pain quickly spiraled into a months-long battle to be taken seriously by medical professionals. Like many people with endometriosis, she faced dismissive doctors, misdiagnoses, and a delayed path to treatment.
Her story reflects a frustratingly common reality: despite affecting an estimated 1 in 10 people with a uterus, endometriosis remains underdiagnosed, undertreated, and misunderstood (1-3).
What is endometriosis?
Endometriosis is a chronic inflammatory disease in which tissue similar to the lining of the uterus grows outside the uterus (1). This can cause severe, life-impacting pain, heavy periods, infertility, and other complications (1).
Key facts:
It affects an estimated 190 million people worldwide (1).
Symptoms often start in the teenage years, but many go undiagnosed for years (4).
The best way to diagnose it is through laparoscopic (keyhole) surgery (5).
The long road to diagnosis
Lisa had been on hormonal birth control for over a decade, which likely masked her endometriosis symptoms. But when she stopped taking the pill at the end of 2020, things quickly changed.
"My periods were always heavy and painful, but I assumed that was just normal. It wasn’t until April last year that something shifted. I started experiencing pain that shot from my ovaries down into my legs. It felt like growing pains, but so intense I thought I might pass out."
Initially, doctors suspected anything from a kidney infection to ovarian cysts. Lisa was prescribed antibiotics and told to wait. But the pain didn’t go away—it only got worse.
"I spent months going back and forth to my gynecologist, who kept telling me to ‘come back in three months,’ and that the cyst on my ovary would eventually go away. By the third visit, I snapped. I told her, ‘I’m not coming back. I’ve wasted so much time, and I’m still in pain.’"
Feeling dismissed, Lisa sought a second opinion. This decision paid off. Her new gynecologist immediately suspected endometriosis and referred her to a specialist.
By this point, Lisa’s symptoms had worsened. The pain was relentless, her periods unbearable, and the digestive issues and bloating—often called “endo belly”—made everyday life a struggle.
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Why does it take so long to diagnose?
On average, it takes 5–12 years for someone to receive an endometriosis diagnosis (6). Some reasons for this include:
Symptoms overlap: Endometriosis is often mistaken for irritable bowel syndrome (IBS), appendicitis, or “bad periods” (7).
Medical dismissal: Many people are told their pain is “just part of being a woman.”
Lack of awareness: Many healthcare providers aren’t trained to recognize endometriosis (1,6).
“You’re not crazy”: The relief of being taken seriously
After months of uncertainty, Lisa finally got an answer: Stage 4 endometriosis.
"I was overwhelmed with happiness. Not because I wanted to have endometriosis, but because I finally had proof that something was wrong. For so long, I had been gaslit into thinking I was just being dramatic, that this was ‘normal period pain.’ But it’s not."
Endometriosis symptoms vary widely, which is why many healthcare providers struggle to diagnose it (1). The only way to be certain is through laparoscopic surgery—a procedure Lisa was initially hesitant about.
"I almost canceled my laparoscopy because I had two months where I felt okay. I thought, ‘Maybe it’s all in my head.’ But I’m so glad I went through with it because the surgeon found endometriosis everywhere—on my bladder, ovaries, and digestive tract."
When to see a healthcare professional
Painful periods are common—but debilitating pain is not normal. You should see a healthcare provider if:
Your period pain prevents you from going to work, school, or doing daily activities.
Over-the-counter painkillers don’t help.
You experience extreme bloating, digestive issues, pain during sex, or when using the bathroom.
You have persistent pelvic pain, even outside your period (1).
Living with a chronic condition
Despite undergoing surgery, Lisa knows that endometriosis is a lifelong condition with no cure—only management.
"After the surgery, I had to make a choice: Do I try to manage this naturally, or do I go on hormone therapy? Ultimately, I chose hormone therapy because my goal is to start a family soon, and I want to give myself the best chance at fertility."
She’s now on Visanne, a progesterone-based hormone treatment, which helps suppress the growth of endometrial tissue. So far, she hasn’t experienced major side effects.
But even with medical intervention, the emotional toll of endometriosis remains.
"It’s scary knowing that I’ll have to deal with this for the rest of my life. The fear of my period coming, the fear of pain during sex, the fear of not being able to conceive—it’s always there."
The importance of self-advocacy
Lisa’s journey highlights an ongoing issue in gynecological healthcare: patients with endometriosis often have to fight to be heard.
"I wish I had been more firm from the start. If I could give one piece of advice, it would be to trust your gut. If a doctor dismisses your pain, push for answers. Get a second opinion. Don’t let them tell you it’s normal."
Finding a support network can be helpful—whether through social media, local groups, or trusted friends and family.
For Lisa, social media has been an unexpected lifeline.
"It sounds silly, but TikTok and online communities helped me realize I wasn’t alone. Seeing other people’s experiences gave me the confidence to demand better care."
How to advocate for yourself in healthcare settings
Trust your body: If you feel something is wrong, push for answers.
Be direct: Ask for a referral to a specialist if a doctor dismisses your pain.
Track symptoms: Use Clue to keep a diary of pain, bleeding, and other symptoms.
Find support: Online communities can help you navigate the medical system.
Spreading awareness and supporting others
Now, Lisa hopes that by sharing her story, she can help others feel seen and validated.
"I wouldn’t wish endometriosis on anyone. But if my story helps even one person recognize their symptoms and seek a diagnosis faster, then it’s worth it."
Her message to others who are struggling?
"You’re not crazy. Your pain is real. Keep pushing for answers. And most importantly, you are not alone."
Resources for endometriosis support
Endometriosis Foundation of America (endofound.org)
The Endometriosis Network Canada (endometrosisnetwork.com)
Worldwide EndoMarch (endomarch.org)
Clue for period and symptom tracking (helloclue.com)
frendo for endometriosis pain tracking (frendo.co.uk)
If you or someone you know is struggling with symptoms of endometriosis, consider seeking out a specialist and finding a community of support. You deserve to be heard—and to access the treatments that can help you.
