A Deep Dive Into Endometriosis
Endometriosis affects 1 in 10 women—yet it takes years to get diagnosed. Learn the symptoms, risks, and how to advocate for care that listens.
You’re doubled over in pain again, but the doctor says it’s “just bad cramps.” You’ve missed work, lost sleep, maybe even questioned your own sanity. But deep down, you know this isn’t normal.
If this sounds familiar, you’re not alone—and it’s not all in your head.
Endometriosis affects an estimated 1 in 10 women and people assigned female at birth, yet it remains one of the most underdiagnosed and misunderstood conditions in women’s health. On average, it takes 7 to 10 years to receive a proper diagnosis. During that time, people often cycle through multiple doctors, incorrect diagnoses, and ineffective treatments—while living with chronic, often debilitating pain.
At HerSay, we’re building more than a health app—we’re creating a tool that helps women speak up, get clear, and feel seen in their healthcare experiences. Because stories like these are far too common, and silence shouldn’t be the standard.
In this article, we’re taking a deep dive into what endometriosis really is, why it’s so often missed, and how women can use tools like HerSay to take back control in the doctor’s office.
Let’s begin with the basics—because every conversation about better care starts with better understanding.
What Is Endometriosis (And What It’s Not)
Endometriosis is a chronic, inflammatory condition where tissue similar—but not identical—to the lining of the uterus grows outside of it. This tissue can be found on the ovaries, fallopian tubes, pelvic lining, bladder, intestines, and in rare cases, even beyond the pelvic cavity.
Each month, just like the uterine lining, this rogue tissue responds to hormonal changes—but unlike menstrual blood, it has no way to exit the body. This causes internal bleeding, inflammation, scar tissue, and painful adhesions that can bind organs together.
What It’s Not:
It’s not “just bad period cramps.” While painful periods can be a symptom, endometriosis is far more complex and can affect multiple systems in the body.
It’s not curable (yet). Endometriosis is a chronic condition. Treatments may help manage symptoms, but there is no known cure.
It’s not rare. Affecting over 190 million people globally, it’s more common than many chronic illnesses that receive far more funding and attention.
Endometriosis has four stages (I–IV), but these stages don’t necessarily correlate with the amount of pain or disruption someone experiences. Someone with stage I (minimal) endo may live with excruciating daily pain, while someone with stage IV (severe) may not have noticeable symptoms.
This disconnect often makes diagnosis and treatment even more challenging.
The Emotional Impact of Being Misunderstood
One of the most damaging myths about endometriosis is that it’s “in your head” or something you just have to live with. This narrative not only delays diagnosis but also undermines the emotional well-being of those living with the condition.
As one HerSay user shared:
“I started to believe I was exaggerating. But the pain was so real—I just didn’t have the language to make doctors listen.”
That’s why understanding the full spectrum of symptoms is so critical—and why we’ll explore that next.
The Symptom Spectrum
Endometriosis doesn’t present the same way for everyone—which is part of what makes it so hard to diagnose. Symptoms can vary in intensity, frequency, and location, often mimicking other conditions like IBS, pelvic floor dysfunction, or even anxiety.
But here’s the common thread: if it’s interfering with your daily life, it’s worth paying attention to.
Common Symptoms of Endometriosis:
Pelvic pain (often chronic, not just during your period)
Painful periods (dysmenorrhea)
Heavy or irregular menstrual bleeding
Pain during sex (dyspareunia)
Pain with bowel movements or urination, especially during menstruation
Bloating, constipation, or diarrhea
Chronic fatigue
Infertility or difficulty conceiving
Less Common but Clinically Recognized Symptoms:
Lower back or leg pain
Shoulder pain (when endometriosis affects the diaphragm)
Nausea or vomiting
Pain when exercising
Frequent urinary tract symptoms without infection
Many people describe a feeling of their body “working against them” or a sense that their pain is dismissed unless it’s visible or measurable.
Why It Gets Misdiagnosed So Often
Endometriosis has been wrongly diagnosed as:
Irritable Bowel Syndrome (IBS)
Urinary tract infections (UTIs)
Pelvic inflammatory disease (PID)
Depression or anxiety
Doctors often focus on one system of the body—reproductive, digestive, or psychological—rather than recognizing the interconnected nature of endo symptoms. As a result, patients may see multiple specialists before finding answers.
HerSay Tip: Track your symptoms in real-time—not just what you’re feeling, but when, how often, and how it impacts your day. This level of detail helps clinicians see patterns they might otherwise miss.
The Diagnosis Gap: Why It Takes So Long
For a condition that affects at least 10% of women and people with uteruses, you’d think endometriosis would be easy to detect. But for most, it’s not.
In fact, the average time to diagnosis is 7 to 10 years. That means years of unanswered questions, misdiagnoses, and being told that what you’re experiencing is “just part of being a woman.”
Why the Delay?
1. Medical Gaslighting
Too often, pain is dismissed or minimized—especially when experienced by women. If you’ve ever been told “it’s normal” or “you’re just stressed,” you’ve likely experienced what’s now being recognized as medical gaslighting.
2. Lack of Non-Invasive Testing
Currently, the only definitive way to diagnose endometriosis is through laparoscopy, a surgical procedure. Without a non-invasive diagnostic tool, many doctors rely on “ruling out” other causes before even considering endo.
3. Gender Bias in Medicine
Historically, medical research and training have centered around male bodies. Women’s pain has been under-researched, underfunded, and undervalued. A 2022 study showed that women are more likely to wait longer for pain medication in ERs—and this bias shows up in gynecology too.
4. Symptom Complexity
Because symptoms vary widely and overlap with other conditions, endometriosis is often misdiagnosed as:
IBS
UTIs
Ovarian cysts
Pelvic floor dysfunction
Even mental health issues like anxiety
5. Silence and Stigma
Many are taught to suffer through painful periods in silence. That silence delays help-seeking and reinforces the idea that “this must be normal.”
How HerSay Can Help
When the burden is on you to prove your pain, having organized, trackable, and time-stamped data can make all the difference. HerSay helps you:
Log recurring symptoms
Capture how symptoms impact your quality of life
Generate specific, credible questions for your next visit
Because you shouldn’t have to spend a decade trying to get someone to take your health seriously.
The Personal Cost of Delayed Diagnosis
When endometriosis goes undiagnosed—or worse, dismissed—the cost isn’t just medical. It’s personal. Emotional. Financial. Relational. And for many, it’s life-altering.
Here’s what that decade of delay can look like.
1. Daily Pain, Normalized
Endometriosis pain isn’t just “bad cramps.” It’s often:
Debilitating pelvic pain that interrupts work or school
Painful sex that causes shame or distance in relationships
Chronic GI issues that make socializing feel risky
Fatigue so overwhelming, you start to doubt your own strength
When you’re in pain more days than not, it becomes easy to forget what “normal” even feels like.
2. Mental Health Strain
Living in a body that feels like it’s betraying you—while constantly being told it’s fine—takes a toll.
Research links endometriosis to higher rates of:
Depression
Anxiety
Disordered eating
Feelings of isolation or hopelessness
It’s not the pain alone—it’s the invalidation that breaks you down.
3. Financial & Career Impact
Endometriosis affects careers and economic security:
Missed days at work or school
Lost productivity
Medical expenses from multiple appointments, tests, and treatments
Difficulty securing steady work due to symptoms
According to a 2020 study, the average annual cost of endometriosis per patient in North America exceeds $10,000—and that doesn’t include lost income or the emotional burden.
4. Fertility Uncertainty
Endometriosis is one of the leading causes of infertility. For those who want to conceive, delayed diagnosis can mean missed windows, increased emotional distress, and invasive fertility treatments.
Even for those who don’t want children, not having a choice can feel deeply unfair.
5. Strained Relationships
When pain and exhaustion are invisible, partners, friends, and family may not fully understand what you’re going through. This can lead to:
Feelings of guilt
Social withdrawal
Relationship breakdowns
HerSay Is Here to Lighten the Load
We can’t undo the past—but we can equip you for the next conversation. HerSay helps you:
Reflect on what’s changed physically, mentally, and emotionally
Prepare your talking points and priorities for your next appointment
Track your health so you can finally show what’s been hard to say
Barriers to Treatment
Getting a diagnosis is just the beginning. Even after endometriosis is identified, accessing effective treatment can be a frustrating, expensive, and emotionally draining journey.
1. Limited Access to Specialists
Endometriosis is a complex condition that requires specialized care—often from gynecologists with advanced surgical training. But:
Many regions have a shortage of endo specialists
Wait times to see one can exceed 6–12 months, especially in Canada
Some general practitioners are unfamiliar with current best practices
This means many people receive outdated or subpar care—if they get care at all.
2. Inadequate or Inconsistent Treatment Plans
There is no one-size-fits-all approach to managing endometriosis. Treatment might include:
Hormonal therapies (like birth control or GnRH agonists)
Pain management (NSAIDs, nerve blocks)
Surgical interventions (laparoscopy, excision surgery)
Pelvic floor therapy
Dietary and lifestyle modifications
However, too often, patients are offered only the pill or told to get pregnant—neither of which are guaranteed solutions, and both of which can feel dismissive.
3. Cost and Insurance Coverage
Even in countries with universal healthcare, there are gaps:
Not all medications are covered
Surgery may require travel or out-of-pocket expenses
Alternative supports like physiotherapy or acupuncture are rarely reimbursed
For many, affording care becomes a barrier to accessing it.
4. Lack of Coordinated Care
Endometriosis impacts multiple systems, but care is siloed:
You see a GI specialist for gut pain
A gynecologist for pelvic pain
A therapist for emotional distress
And you’re the one connecting the dots
Without a coordinated approach, patients are left to self-navigate a fragmented system.
5. Medical Mistrust
After years of being dismissed, many people with endometriosis develop medical trauma or mistrust, making them less likely to seek care—even when they need it most.
How to Advocate for Yourself (Or Someone You Love)
If you’re navigating a confusing maze of symptoms, appointments, and uncertainty, you are not alone—and you are not powerless.
While the healthcare system may not be designed with women in mind, you can still take control of your story, your body, and your care.
Step-by-Step: Self-Advocacy That Works
1. Track Your Symptoms Regularly
Start with a simple log of:
What you’re feeling (e.g., pain, fatigue, bloating)
When it occurs (cycle timing, time of day)
How it impacts your life (missed work, sleep disruption, etc.)
Tip: Use HerSay to capture these details clearly and privately in one place.
2. Identify Patterns and Priorities
After a few weeks, look for patterns:
Does pain worsen around your period?
Are your symptoms tied to digestion or activity?
Make a shortlist of your top three concerns to bring into your next appointment.
3. Prepare Your Questions Ahead of Time
Walk into your appointment with specific, focused questions like:
“Could this be endometriosis?”
“What are the next steps for diagnosis?”
“Can I be referred to a gynecologist with expertise in endo?”
“What treatment options align with my goals (e.g., fertility, pain relief)?”
HerSay can generate these questions for you, personalized to your symptoms and concerns.
4. Bring a Support Person (If You Can)
A partner, friend, or advocate can help take notes, ask follow-up questions, and reinforce your concerns. You deserve backup.
5. Ask for Everything in Writing
After your appointment, request:
A summary of what was discussed
Any referrals or test orders
The provider’s clinical notes (where possible)
This documentation helps you build a clearer care history.
6. Don’t Be Afraid to Seek a Second Opinion
If you feel dismissed, rushed, or unheard—it’s okay to keep looking. A second opinion can be validating and, in many cases, life-changing.
Supporting a Loved One with Endometriosis
If someone you care about is struggling:
Believe them. Even if the pain doesn’t make sense to you.
Offer logistical help. Rides to appointments, help with insurance, or just listening.
Respect their pacing. Chronic pain can be invisible and unpredictable. Show grace.
The Role of Technology and Tools Like HerSay
We live in a world where you can track your sleep, your spending, and your steps—but for millions of women, tracking and managing their health still feels like guesswork.
When it comes to complex, chronic conditions like endometriosis, that’s not just frustrating—it’s dangerous.
Why Digital Tools Matter in Women’s Health
Too often, women are expected to recall symptoms from memory, summarize years of invisible pain in a 15-minute appointment, and ask the “right” questions without any support.
Digital health tools like HerSay help level the playing field by:
Making invisible symptoms visible
Turning scattered notes into structured insights
Empowering patients to be proactive, not passive
And importantly: we don’t diagnose. We prepare you to be heard.
How HerSay Works for You
HerSay was built by women who’ve sat in exam rooms and struggled to speak up. Our features are designed with empathy and evidence:
Symptom Tracking
Log what you’re experiencing in real time—pain, fatigue, GI issues, mood, and more.
Personalized Question Generator
Based on your tracked data, HerSay helps you generate a list of smart, specific questions to bring into your appointment.
Follow-Up Tracker
After your visit, record what was said, what tests were ordered, and what next steps are expected—so nothing gets lost in the shuffle.
Private & Secure
Your data is encrypted and stored securely. You control what to share and when.
Technology Should Support—Not Replace—Human Care
HerSay is not trying to be a doctor, and we’re not trying to take over the appointment. Instead, we serve as a clarity engine: helping you distill the chaos into something you can carry with confidence into your healthcare interactions.
As AI and digital health evolve, one thing should never change: the patient must remain at the center. Tools like HerSay are here to restore power to the person who knows their body best—you.
What’s Changing—And What Still Needs to Change
For decades, endometriosis was whispered about—if it was discussed at all. But things are starting to shift. Awareness is growing. More people are sharing their stories. And the world is beginning to realize what those living with endo have known all along: this is not a niche issue—it’s a global health crisis.
What’s Changing
1. Public Awareness Is Rising
Thanks to advocates, celebrities, and online communities, more people are talking about endo than ever before. Public figures like Lena Dunham, Padma Lakshmi, and Amy Schumer have spoken openly about their struggles, helping to break the stigma and spotlight the condition.
2. Femtech Innovation Is Accelerating
Startups like HerSay are redefining what it means to be informed, empowered, and supported in healthcare. There’s growing investment in technology focused specifically on women’s health, with billions flowing into digital tools for menstruation, fertility, and chronic conditions.
3. Research and Policy Are Catching Up
In recent years:
The Canadian Institutes of Health Research launched a funding initiative for endometriosis research.
The NIH in the U.S. began re-evaluating its women’s health research priorities.
New diagnostic tools are in development, including non-invasive biomarker tests and AI-powered symptom mapping.
These are steps in the right direction—but we’re still far from where we need to be.
What Still Needs to Change
1. Faster, Easier Diagnosis
We need accurate, affordable, non-surgical ways to diagnose endometriosis early. A 10-year delay is unacceptable.
2. Better Clinical Education
Many providers still receive little to no formal training on recognizing and managing endometriosis. That gap leaves too many patients suffering in silence.
3. Inclusive Research
Historically, endometriosis research has focused primarily on white, cisgender women. We need inclusive studies that reflect racial, gender, and socioeconomic diversity—because everyone deserves access to answers.
4. Coordinated, Compassionate Care
Endometriosis care must move beyond the reproductive system. It requires a multi-disciplinary approach—connecting gynecology, gastroenterology, mental health, and more.
5. A Cultural Shift
We need to stop treating women’s pain as inevitable. Period pain is common—but it’s not supposed to be debilitating. When people speak up, they should be taken seriously.
If you’ve read this far, chances are you’ve experienced the confusion, exhaustion, and quiet rage that often come with navigating endometriosis. Maybe you’re still waiting for answers. Maybe you’ve stopped trying to get them.
We see you. And we built HerSay for you.
You deserve care that listens, believes, and acts. You deserve to walk into appointments with clarity—not fear. You deserve tools that reflect the complexity of your body and the reality of your life.
Endometriosis is real. It’s common. And it’s not your fault.
At HerSay, we believe technology should empower—not overwhelm. That’s why we’re creating a space for women to prepare, reflect, and advocate—without having to become medical experts just to be taken seriously.
Whether you’re newly exploring your symptoms or years into your diagnosis, you don’t have to do it alone.
🏥 Medical & Educational Resources
National Institute of Child Health and Human Development (NICHD)
Comprehensive information on endometriosis, including symptoms, diagnosis, treatment, and research initiatives.
American College of Obstetricians and Gynecologists (ACOG)
Clinical guidelines and patient FAQs on endometriosis management.
American Society for Reproductive Medicine (ASRM)
Resources focused on reproductive aspects of endometriosis, including fertility considerations.
Women’s Health.gov
Accessible information on endometriosis symptoms, risk factors, and treatment options.
💛 Advocacy & Support Organizations
Endometriosis Foundation of America (EndoFound)
Dedicated to increasing disease recognition, providing advocacy, facilitating expert surgical training, and funding research.
Endometriosis Association
Offers educational materials, support services, and funds research on endometriosis.
Endometriosis.org
A global platform providing news, information, and support for those affected by endometriosis.
The Endometriosis Network Canada
Provides support groups, educational resources, and advocacy for Canadians living with endometriosis.
SpeakENDO
An initiative offering resources and community support to raise awareness about endometriosis.
🌐 Online Communities & Tools
MyEndometriosisTeam
A social network for individuals living with endometriosis to share experiences and support.
Endometriosis Research Center (ERC)
Focuses on awareness, education, support, and research related to endometriosis.
Center for Endometriosis Care (CEC)
Offers educational materials and specializes in the treatment of endometriosis.