I made a guide for advocating for yourself at doctor's appointments when you feel dismissed

If you've ever left a doctor's appointment feeling dismissed, rushed, or more confused than when you walked in, you're not alone. For those of us dealing with conditions like endometriosis, interstitial cystitis, vulvodynia, chronic UTI, and other pelvic health issues, getting taken seriously can feel like a full-time job. The average time to diagnosis for Endometriosis is 6 to 11 years, despite affecting 190 million people worldwide. This is a symptom of a healthcare system that often lacks training in complex women's health conditions. The good news: you can learn to advocate for yourself. Here's what's helped me and others: **Understand your role.** 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 makes your symptoms flare, or how many treatments you've already tried. When you show up with documented patterns and specific questions, you're not being difficult. You're being a partner in your own care. **Come prepared**. The average primary care visit is about 15 minutes. Make them count. Before your visit: * Write down your goal for the appointment (example: "I want my doctor to order labs to check my vitamin D levels") * Bring a timeline of symptoms, previous treatments, and test results * List all current medications and supplements **Phrases that help:** * "I'd like to understand why this is happening, not just manage 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 conditions are diagnosed based on symptoms alone—sometimes too quickly. Conditions like IC, for example, are supposed to be a diagnosis of exclusion, meaning other causes should be ruled out first. If you've been diagnosed but aren't improving, or feel like testing was minimal, ask: * "What tests have we done to rule out other conditions?" * "Are there more specialized tests available?" * "I've read about \[specific test\]—is that worth considering for my situation?" **Know when to push back**. Dismissal often sounds like: * "Your labs are normal, so nothing is wrong." * "It's probably just stress." * "You'll just have to learn to live with it." If you're hearing this but still experiencing real symptoms, trust yourself. You can say: * "I hear you, but my symptoms are significantly affecting my quality of life. What else can we explore?" * "Can you document in my chart that you're declining to run this test?" And remember, if a doctor isn't a good fit, finding another one isn't "doctor shopping." It's self-advocacy. **Build a team**. One doctor often isn't enough. Pelvic conditions can benefit from: * Urologist or urogynecologist (bladder symptoms) * Gynecologist (reproductive/hormonal concerns) * Pelvic floor physical therapist (muscle dysfunction, pain, tension) * Gastroenterologist (if bowel symptoms overlap) * Pain management specialist (chronic pain) **Bring backup if needed.** Appointments can be overwhelming, especially when you're in pain or anxious. Consider: * Bringing someone who can take notes or ask follow-ups * Recording the visit (with permission) * Writing down what was said right after, while it's fresh **Your pain is real.** Women's health conditions are under-researched, underfunded, and often misunderstood, even by doctors. 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. **TL;DR:** * Prepare with a clear goal and symptom history * Ask what's been *ruled out*, not just what you've been diagnosed with * Push back respectfully when dismissed * Build a multidisciplinary care team * Trust your own experience Hope this helps someone. Happy to answer questions if you've dealt with similar stuff. 🩷