One of the hardest things I have dealt with in my endometriosis journey is the struggle to speak up for myself during doctor’s appointments. Over the years, I let doctors dismiss my severe symptoms and convince me that I had a normal cycle. As a result, I experienced a 15-year wait from symptom onset to diagnosis. I knew from early on that something was wrong but didn’t push for answers. Even after finally getting my diagnosis, I still need to constantly push myself and work hard to advocate for myself while at the doctor.
I am not alone in my struggle to self-advocate. Many people with endometriosis face similar challenges. On average, it takes 7-10 years for patients to be diagnosed with endometriosis. Symptoms are often minimized, overlooked, or disregarded. With endometriosis it is crucially important to speak up for yourself to ensure you get the diagnosis and treatment you need.
Here are key steps you can take to help boost your self-advocacy skills before, during and after your visit.
Before your visit
Do your research: Start researching as early as possible. Seek out doctors who specialize in endometriosis and read reviews about them to find the doctor who is the best fit for you. Get up to speed on the basics of endometriosis treatment options and new endometriosis research findings that you can discuss with your doctor. Reach out to your insurance provider to try to get a sense of what your visit might cost to reduce the need to worry about an unexpected bill later.
Prepare, prepare, prepare: The more you prepare, the more confident you will be when talking to your doctor. List out your symptoms and concerns on paper. Use a cycle tracking app to track your day-to-day symptoms. Think through the questions you have for your doctor and write them down. Bring previous records from your other doctors so you can help paint the full picture for your visit. Pack up your records, lists, and a notebook the night before your appointment so you don’t have to worry about it on the day of your visit.
During your visit
Take notes: It’s easy to get overwhelmed at the doctor’s office and walk out completely forgetting what they said. Take notes during your doctor’s visit that you can easily reference if you forget something, and so you have a record of what you discussed.
Ask questions: Don’t be afraid to ask as many questions as you need to. Reference your list of questions and write down the answers you get from your doctor. Don’t be shy about getting through your whole list, even if your doctor seems busy and rushed.
Stay firm: If you feel like your doctor is rushing you, not listening to you, or dismissing your symptoms, stay your course. Remember that you are there to get the help you need for your health. Sometimes it makes it easier to advocate for yourself if you think about the impact it will have on your loved ones. When you talk to your doctor, think about how getting the care you need will help your loved ones too.
Consider bringing support: Bring a family member, partner, or friend for additional backup if you want help advocating for yourself. If you have the financial means, another option is to hire a patient advocate, which is a professional with a medical background who will advocate for you. You can learn more about this through organizations such as the Patient Advocate Foundation.
After your visit
Take time to digest: Take some time to relax and think about your doctor’s visit. Going to the doctor can be emotionally and physically draining for patients with endometriosis. Think over the information your doctor told you and review your lists of questions and answers and your notes.
Consider a second opinion: If you still have questions or feel that you didn’t receive adequate care, don’t hesitate to get a second opinion. Make sure you bring your notes and records from your previous visit to that second opinion visit. Prepare to express why you disagree with the initial assessment.
Don’t be too hard on yourself: Self-advocacy is no easy task, and endometriosis can be a tough subject to speak about. With every visit, think about where you still need to improve and work to improve that for next time. Don’t get bogged down in the “what if’s” but instead focus on the “what’s next.”
Visits during the COVID-19 pandemic
The typical doctor’s visit has changed significantly due to the COVID-19 pandemic. With new protocols, visitor policies, mask wearing, telehealth, and more, doctor’s visits have now become even more intimidating. Here are a few tips specific to navigating self-advocacy during the pandemic:
Bring your visitor in virtually: If your doctor’s office is not allowing visitors but you want extra support, call your visitor via a video call and have them participate in the visit virtually. Don’t be nervous or ashamed to video your visitor in, this is becoming common practice as a result of the pandemic.
Make the most of telehealth: Even though it can sometimes feel harder to connect with your doctor during a telehealth visit, it can provide some advantages. Being in your own home environment may allow you to feel more comfortable than you would in a doctor’s office. Use that to your advantage to help build your confidence and seize the opportunity to speak up.
References:
Advocating for Your Health, BC Women’s Health Foundation, https://www.bcwomensfoundation.org/advocate-for-your-health/
Come Prepared, Speak Up, Take Notes: How to Advocate for Yourself at the Doctor’s Office, USA Today, October 20, 2020, https://www.usatoday.com/story/news/health/2020/10/20/heres-how-doctors-say-advocate-yourself-appointments/5989178002/
Endometriosis FAQs, Endometriosis Foundation, https://www.endofound.org/faq
Girls’ Rights and Self-Advocacy in Health Care, Nursing@Georgetown, https://online.nursing.georgetown.edu/blog/health-care-rights-for-girls/
