Pelvic Pain Isn’t Rare — So Why Are Patients Still Treated Like It Is?

Pelvic pain affects millions of people worldwide. Yet every day, patients living with chronic pelvic pain are dismissed, delayed, or told their symptoms are normal.

For many, the journey begins with years of unanswered questions.

People experiencing endometriosis and pelvic pain (diagnosed or undiagnosed) are often told:

• “Your tests are normal.”

• “This is just part of being a woman.”

• “Try birth control.”

• “It’s probably anxiety.”

• “Come back if it gets worse.”

But pelvic pain is not rare. And it is not imaginary.

Conditions like endometriosis, adenomyosis, and PCOS impact daily life, fertility, mental health, and in severe cases, vital organs. Despite this, patients frequently wait years for proper diagnosis and treatment.

The Diagnostic Delay Crisis

For endometriosis alone, the average diagnosis takes 7–10 years.

Seven to ten years of unmanaged or unexplained pain.

Seven to ten years of missed work, school disruptions, and emotional exhaustion.

And for many, diagnosis does not bring relief.

Endometriosis can only be definitively diagnosed through laparoscopic surgery. Even then, patients often face limited access to specialists, long waitlists, and insurance barriers.

A diagnosis does not mean the pain or symptoms ends.

It often marks the beginning of a new set of challenges.

Why Are Patients Still Being Dismissed?

Pelvic pain exists at the intersection of systemic healthcare gaps and gender bias.

Historically, pain experienced by women and marginalized groups has been minimized or misunderstood. Research funding for endometriosis and other pelvic pain conditions remains drastically lower than for many other chronic illnesses.

Patients report being told their symptoms are psychological, exaggerated, or unrelated to their reproductive organs.

Many are advised to manage symptoms instead of being offered comprehensive care.

This dismissal delays treatment, worsens disease progression, and leaves patients feeling invisible.

Pelvic Pain Is Complex — And Requires Comprehensive Care

Pelvic pain is rarely caused by a single factor.

It may involve:

• Endometriosis

• Adenomyosis

• PCOS

• Pelvic floor dysfunction

• Nerve sensitization

• Adhesions

• Bladder or bowel involvement

• Endometriosis of the chest and lungs

Effective care often requires a multidisciplinary approach including pelvic floor therapy, pain management, mental health support, lifestyle interventions, and when appropriate, surgical treatment.

There is no one-size-fits-all solution.

Patients deserve individualized, compassionate care.

Advocacy Changes Outcomes

Education, awareness, and community advocacy are essential.

When patients are informed, they can better advocate for themselves. When communities come together, systems begin to change.

That is why the Pelvic Pain Coalition of Utah (PPCU) exists.

Our mission is to provide pelvic pain education, advocacy, and support for individuals and families affected by chronic pelvic pain in Utah and beyond.

Through community events, educational seminars, and patient-centered resources, we are working to close the gaps in care and ensure no one navigates endometriosis or other pelvic pain (undiagnosed or diagnosed) alone.

You Are Not Alone

If you or someone you love is living with endometriosis or any other pelvic pain, know this:

Your pain is real.

You deserve answers.

You deserve care.

Together, we can raise awareness, support patients, and push for better research and treatment options.

Visit www.ppcuendowarrior.org to learn more, access resources, and join our growing community.

Written by: Ashley Hendrickson