When I was diagnosed with endometriosis more than a decade ago, I learned firsthand about the power of advocating for yourself. My mom has the disease too, so when I started complaining of those tell-tale symptoms, she brought me to a gynecologist. The first doctor I visited told me to worry about the issue when I wanted to get pregnant. I was a teenager and definitely not interested in baby-making, so that seemed fine.
Fortunately, my mom had a conversation with me about advocating for yourself, and off we went to another doctor. One laparoscopy later and I had an endometriosis diagnosis, as well as a treatment plan and valuable lessons about listening to your own body and pushing for answers.
Regardless of when you received your diagnosis or where you are in your treatment, advocating for yourself is an essential part of maximizing your physical and mental well-being when you’re dealing with endometriosis. Here are some tips on being your own best endo advocate:
Take notes
When you’re seeing your provider, you’re trying to absorb an onslaught of crucial information in a short period of time. There’s nothing more frustrating than getting home and trying to recap the visit to a loved one, only to realize that your mind has gone blank. Prevent this frustration by taking notes, either in a notebook or in your phone’s notepad app, as you’re chatting with your doctor. You can jot down terminology, next steps, important dates, and other details that you want to be sure you remember later on.
In addition to keeping track of what the doctor’s saying during your visit, consider writing down any questions you have for your provider before you arrive. This frees up space in your brain and ensures you’re getting all your questions answered when you’ve got the doctor in front of you. Ask a loved one if they have any questions, too, as they might be wondering about something that you hadn’t thought of yet.
Enlist the help of a friend or family member
When you’re dealing with a disease as all-consuming and emotional as endometriosis, it’s essential to rely on your support network as you navigate through your journey. The COVID-19 pandemic makes doing so slightly trickier, since you may not be permitted to bring anyone else into the exam room with you, however, you can utilize platforms like FaceTime or Zoom instead. This allows people you care about to participate in the appointment, even if they’re not able to be physically present.
Beyond just providing moral support, Dr. Smitha Vilasagar, MD, FACOG, minimally invasive gynecologic surgeon and endometriosis specialist at Atrium Health in Charlotte, North Carolina, explains that loved ones play an important role in a patient’s care plan. “There are often different symptoms or scenarios that family members, friends, or partners bring into the conversation that the patient may miss or downplay. It's nice to have someone else adding to the patient’s history,” she says.
If you’re not sure how to utilize your loved one most effectively at your appointment, Dr. Vilasagar suggests going over important goals for the appointment ahead of time to ensure that you’re on the same page. You can also talk about the answers you hope to get from the visit or the most important issue that you expect to cover at that particular appointment.
Don’t hesitate to make use of patient portals
No matter how well-prepared you try to be for each appointment, there will inevitably be a situation where the doctor walks out of the room and you immediately find yourself with more questions. Dr. Vilasagar encourages patients to make use of the patient communication portals that many doctors’ offices now offer. These platforms allow you to communicate with your provider regardless of when your next appointment is scheduled.
If you don’t feel comfortable getting your questions answered using this method, Vilasagar adds that you shouldn’t hesitate to make a follow-up appointment so you can get your concerns addressed face to face, even if your doctor didn’t specifically ask that you come back in.
Don’t let embarrassment squash important conversations
When it comes to endometriosis, your bathroom habits, your sex life, your desire (or not) to have kids, and other sensitive topics are all on the table. Some patients may find that putting themselves out there and having these vulnerable conversations can feel intimidating or embarrassing. This is especially true if you grew up in a household that preferred to skip over body-related topics. But Dr. Vilasagar encourages patients not to let embarrassment get in the way of their ability to communicate effectively with their healthcare provider, regardless of how sensitive the topic might be.
“This is part of what has to change around the dialogue about endometriosis,” she says. “You deserve to have a healthy quality of life and to do that you need to bring up the symptoms that matter. You need to be able to say, ‘It hurts when I poop’ or ‘It hurts when I have sex.’ You should walk in with your head held high and be proud that you’ve taken your health into your own hands and are asking these questions.”
Stay organized
Trying to juggle doctor’s appointments, work commitments, and family obligations can feel overwhelming. To minimize stress, make organization a priority. That may look like a planner, writing a to-do list each day, or using your phone’s calendar to keep track of where you need to be and when. Find a system that makes sense to you and be diligent about keeping it updated. Your future self will thank you.
Use the internet wisely
The internet can be a great place to find connection and empathy among fellow endo warriors. A quick Facebook search for “endometriosis” yields a handful of groups with thousands of members just waiting to support you and empathize. Searching a hashtag on Twitter or Instagram can quickly connect you with other people experiencing what you’re dealing with, regardless of how far away they might live. At the same time, you’ll want to remain cautious and analytical as you wade into the Internet waters.
Unfortunately, for every supportive virtual friend you’ll find, it’s also possible to find someone selling their own product line that they claim instantly cured their own endometriosis. Be cautious and make it a point to do your own research about your treatment plan. If something seems too good to be true, it probably is. And if you’re ever in doubt about the accuracy of something you read online, don’t hesitate to fact-check with your doctor. Connecting with others who are fighting endometriosis is a powerful way to ease the emotional burden of the disease, but planning your healthcare around Internet “experts” is never a wise move.
Fighting endometriosis takes a heavy toll both physically and mentally. But when you begin to serve as your own advocate, it becomes easier to get the answers and support you need to manage your journey as effectively as possible.
