The average time to diagnosis for endometriosis is 6 to 11 years, despite the condition affecting roughly 190 million people worldwide (WHO, 2023). On the other end, conditions like interstitial cystitis (IC), which the American Urological Association classifies as a diagnosis of exclusion, are sometimes assigned before other causes have been fully ruled out (Clemens et al., 2022). These aren't individual failures. They're symptoms of a healthcare system that often lacks training in complex pelvic conditions.

The good news: you can learn to advocate for yourself effectively. Here’s how:

Understand your role.

There's a phrase worth remembering: A doctor is the expert on the body. You are the expert on YOUR body.

Your doctor has medical training, but they don't live in your body. They don't know what your pain feels like at 3 a.m., what foods make your symptoms flare, or how many times you've tried a treatment that didn't work.

When you walk into an appointment with documented patterns and specific questions, you're not being difficult. You're being a partner in your own care.

Come prepared.

The median primary care visit lasts 15 minutes. Make those minutes count.

A 2024 review of over 7,600 patients with chronic conditions found that structured self-management approaches, including organized symptom tracking, led to better quality of life and greater confidence in managing their own health (Healthcare, 2024). In other words, the more prepared you are, the harder it is for your concerns to be brushed aside.

💡 Before your appointment:

Bring a written or digital summary that includes:

• Any goals for the appointment. For example: "I want my doctor to order lab work to check my Vitamin D levels."

• A timeline of your symptoms (when they started, what's changed)

• Your current medications and supplements

• Any symptom patterns you've noticed (food triggers, cycle correlation, time of day)

• A list of (relevant) tests you've already had done and their results

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Phrases that help:

"I'd like to understand why this is happening, not just manage my symptoms."

"Can you explain your reasoning? I want to learn."

"What else could this be? I want to make sure we've ruled out other causes."

Ask about testing.

Many pelvic health conditions are diagnosed based on symptoms alone, and sometimes too quickly. Conditions like interstitial cystitis, for example, are considered a diagnosis of exclusion, meaning other causes should be thoroughly ruled out first.

If you've received a diagnosis but aren't improving, or feel like testing has been minimal, it's okay to ask:

"What tests have we done to rule out other conditions?"

"Are there more advanced or specialized tests available?"

"I've read about [specific test]. Is that something worth considering based on my history?"

Know when to push back.

A 2025 study of 447 women with vulvovaginal and pelvic pain conditions found that 45% had been told their symptoms were "all in their head," and roughly 20% were referred to a psychiatrist without receiving any medical workup first (Moss et al., 2025). If that sounds familiar, know that this is a well-documented pattern in healthcare, not a reflection of your credibility.

Dismissal can sound like:

"Your lab tests are normal, nothing is wrong."

"It's probably just stress or anxiety."

"You'll just have to learn to live with this."

If you're hearing these phrases but still experiencing real symptoms, trust yourself.

You can say:

"I understand, but my symptoms are significantly affecting my quality of life. What else can we explore?"

"Can you document in my chart that you are declining to run this test?"

Remember, your doctor works for you. If this doctor isn't the right fit, find a different one. This isn't doctor-shopping. It's self-advocacy.

Build your team.

One doctor may not be enough. Pelvic health conditions often benefit from a multidisciplinary approach, including but not limited to:

• Urologist or urogynecologist for bladder-related symptoms

• Gynecologist for reproductive and hormonal concerns

• Pelvic floor physical therapist for muscle dysfunction, pain, and tension

• Gastroenterologist if bowel symptoms overlap

• Pain management specialist for chronic pain support

Bring backup (if needed).

Appointments can be overwhelming, especially when you're in pain or anxious. Consider:

• Bringing a trusted friend or partner who can take notes or ask follow-up questions.

• Recording the appointment (with permission) so you can review it later.

• Writing down what the doctor said immediately after, while it's fresh.

Remember: your pain is real.

Pelvic conditions are underresearched, underfunded, and often misunderstood, even by medical professionals. You deserve to know what's actually happening in your body. You deserve doctors who do the full workup. And you deserve access to information about what that workup should include.

Advocating for yourself in healthcare is emotionally exhausting. It's okay to feel frustrated. It's okay to cry in the parking lot afterward. What matters is that you keep showing up for yourself.

You are not "too much." You are not imagining it. And you deserve answers, not just symptom management.

Key takeaways

• Prepare for your appointment with a clear list of concerns and your symptom history.

• Ask what's been ruled out, not just what you've been diagnosed with.

• Push back respectfully when you feel dismissed.

• Build a care team that addresses all aspects of your condition.

• Trust your own experience.

SOURCES

World Health Organization. "Endometriosis." WHO Fact Sheet, 2023. https://www.who.int/news-room/fact-sheets/detail/endometriosis

Clemens, J.Q., Erickson, D.R., Varela, N.P., Lai, H.H. "Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome." Journal of Urology, American Urological Association Guideline, 2022.

Moss, C., et al. "Medical Gaslighting in Patients with Vulvovaginal Pain." The Journal of Sexual Medicine, 2025.

Healthcare. "The Effect of Self-Management on Patients with Chronic Diseases: A Systematic Review and Meta-Analysis." MDPI Healthcare, 12(21), 2024.

"Why the Average Doctor Visit Is 15 Minutes Long." PBS NewsHour. https://www.pbs.org/newshour/health/need-15-minutes-doctors-time