10 ways women can advocate for themselves at the doctor
Undiagnosed health issues are scary enough. Doctors taking them seriously can be the difference between an accurate diagnosis and years of suffering. Sadly, many women struggle to receive proper treatment, especially when it comes to gynecological conditions.
Not only are gynecological issues especially tricky to diagnose, but many medical professionals are undereducated about them. Additionally, studies show that women’s pain is consistently dismissed. A formative 2001 study from the University of Maryland shows that although female patients report pain more frequently and severely than male patients, not only is their pain treated less aggressively than men’s, but they are likely to be given a psychiatric diagnosis whereas male patients with the same symptoms are not. Doctors are literally telling women that it’s all in their head.
So how do you get treatment when your doctor doesn’t believe you? It’s important to remember that it’s not the patient’s fault if a medical professional isn’t taking their symptoms seriously. But it’s not always easy or possible to change doctors, so we’ve created a guide to being your own advocate when you’re struggling to be heard. We’re sharing tips for preparing for and speaking up during an appointment, as well as stories from women who fought to have their gynecological conditions diagnosed. Because you’re not alone!
1. Find the right doctor
If you're able to choose your healthcare provider, try to get a recommendation from someone you trust. If you have a specific health issue you’re concerned about, look for someone who specializes in that. You can also find recommendations online and through support groups. Try to find reviews online, even if you aren’t able to choose your healthcare provider, so you can prepare yourself for their approach.
2. Keep records
Keep a journal of your symptoms, noting when they started, when they occur, and what makes them better or worse. Also write a list of any medications you use (including prescription, over-the-counter, herbal remedies, and supplements) and the side effects you experience. Bring these notes to your appointment.
3. Research your symptoms
You are not expected to be a medical expert, and it’s important to only trust verified medical sources, but the majority of the women we spoke to who struggled to receive a diagnosis said that researching their symptoms was one of the main ways they figured out what their health issue was. Online support groups can help you connect with people going through similar issues, just make sure to be mindful about following any treatment recommendations.
4. Make a plan
Think about what is most important for you to get out of the limited amount of time you may have with the doctor. Make a list of issues you want to cover at the appointment, including questions for your doctor. If you have any recent test results that they might not have access to, make a copy to bring with you.
5. Ask someone to come with you
It can help to have a friend, family member, or partner at the appointment with you to provide moral support and even vouch for your symptoms. You can also bring a patient advocate, a trained professional or volunteer who accompanies you and helps ensure you receive appropriate care. Some advocates specialize in certain topics, or can even help translate.
If you bring someone with you, introduce them to your healthcare provider, and state that you want them to stay for the appointment. Your provider might ask your support person to leave for part of the appointment to make sure that they aren’t speaking for or coercing you.
6. Be assertive
Talk about the most important thing first to make sure you have time for it. Clearly express your goals for the visit, tell your provider about your symptoms, and try to get some answers. Don’t downplay your symptoms, and be sure to tell your provider how they’re affecting your life. Try to focus on tangible or measurable symptoms if possible, like physical changes in your body. Bring up all abnormal symptoms you have, even if they seem unconnected. Remember that you have the right to decline any procedure or treatment that you’re uncomfortable with. And if they do not approve a lab, procedure, or test that you ask for, ask them to note in your charts that they refused your request.
7. Ask questions
There truly are no stupid questions. If you don’t understand something your healthcare provider says, ask them to slow down and explain it. If they give you a diagnosis, ask if there’s any chance it could be something else. If they prescribe a treatment or medication, ask about any potential side effects or drug interactions. Find out when you should contact your doctor if you experience side effects, and what to do if your symptoms don’t improve. If they refer you to a specialist, confirm how soon you should see them.
8. Take notes
Taking notes or recording your appointment can help you remember what your doctor said and provides a record of any diagnoses or treatment recommendations they make. If you bring a support person with you, it can help to have them take notes so that you can focus on the conversation.
9. Don’t settle
It’s ok to seek a second opinion — and a third, and a fourth. If you’re able to, try different kinds of doctors in different specialties until you get answers. If a doctor dismisses you and your symptoms, keep searching for one that won't. You’re allowed to fire your doctor.
10. Trust your instincts
You know your body and you know when something isn't right. Trust yourself. If something doesn’t feel right, get a second opinion or do more research. You should not be pressured into rushing into any treatment or procedure you’re not comfortable with.
Advice from women who have been there:
“Take a trusted confidant with you to doctor's or physical therapists' appointments if you can. Fill out the Pain Perception Project and take it with you to appointments. And don't let a doctor dismiss you or act like these aren't problems worth paying attention to. They are.” — Lara Parker, 28 (pelvic floor dysfunction, vaginismus, vulvodynia, vulvar vestibulitis, endometriosis, and painful bladder syndrome)
“Find people who are close to you to support you. Having a supportive network is key. If you are new to a city find online forums for women who are supportive of women (like the Bellesa group chat). Keep believing yourself, you know your body the best. If you are feeling pain then advocate for yourself, take someone who believes and supports you to the doctor so that when you struggle to advocate they can help you.” — Mo, 23 (hypertonic pelvic floor muscles, acute/local vulvar vestibulitis/vulvodynia, and vaginismus)
“I would suggest that someone who is dealing with pelvic pain research research research. Research is your friend. Bring as much information as you can to your next doctor's appointment. Don't let people tell you that it's all in your head. You know that your body hurts and you know it's not supposed to. Don't back down until you get the treatment you deserve. Pelvic floor physical therapy seems so scary, but it will save your life. Know that you are not alone. There are so many other women out there struggling with these disorders. You're going to be okay.” — Kate, 24 (vaginismus and vulvodynia)
“If someone is young and going through this, vaginismus or not, find a support group. The online vaginismus group helped me so much with gaining the courage to go and finally get things done for myself. I've read so many other people's stories on there that really stuck with me. I know it can be scary, but we have to be kind to ourselves and advocate for ourselves. You come first! Never feel that you are being bothersome or selfish, it's OKAY to put yourself first sometimes because I know a lot of people don't.” — Moselle, 23 (vaginismus)
“Keep a diary of anything you try, so you can chart if you're making progress. The more of this evidence you can give to a medical practitioner, the more of an understanding they'll be able to have. But ultimately, vulvodynia is a condition that can definitely be improved. I am in a far better physical and mental place now compared to a year ago from new medication but also try and seek therapy too because the mental impact of dealing with a chronic vulvar condition is huge.” — Jess, 25 (vulvodynia)
“Although it was really hard for me to advocate for myself, I would definitely say that’s the major advice I would give someone going through a similar experience. Whether that means asking more questions and being sure to share your own ideas about what’s happening to your body or finding someone who will actually help advocate for you, I think we have to stay strong and not give in when you know something is wrong. It was really hard for me to acknowledge that maybe my gynecologist was wrong, I assumed she would be the one with the answers here, so switching to someone else was basically my last resort and I wished I had done it sooner.” — Andrea Sweezy, 21 (endometriosis)