7 Tips for Talking to Your Doctor About Endometriosis

When I started having trouble with pelvic pain and irregular periods, I didn’t know how to bring it up to my doctor. I suspected endometriosis as it ran in my family, but whenever I spoke about my symptoms and issues with my doctors I was often dismissed or gaslit. It’s taken a long time to get a diagnosis of endometriosis. I’ve gone through many gynecologists and it finally took me being referred to a specialist to get a diagnosis. For most people, it can take upwards of 7-10 years to be diagnosed with endometriosis. Figuring out how to advocate for yourself and talk to your doctor can help you in your diagnosis journey as well as after being diagnosed.

1. Track your endometriosis symptoms.

I’m not always the best person when it comes to tracking my symptoms, but it’s so helpful to do this when talking to your doctor about endometriosis. Just going into an appointment with complaints of pelvic pain and irregular periods might not be enough. However, having all your symptoms written down and tracked can really help in your appointment. This can be done in a notebook or a period tracker on your phone.

2. Be honest about your endometriosis symptoms.

I know as a person with a uterus, we are used to having periods, pain, and cramps, but now is not the time to just brush off the pain. Be honest with your doctor about your symptoms and your pain levels, and if you are having painful intercourse or irregular periods. Downplaying pain can cause you to possibly not get the care you desperately need.

3. Have a list of questions about endometriosis and gynecological health.

I often keep a list of questions on my phone as they come up to bring to my next appointment with my doctor. Here is a list of questions I’ve taken to an appointment, but your questions might vary due to the symptoms you go through and the type of research you’ve done.

1. What treatment options are there?
2. What will the treatment do to help my symptoms?
3. Are there medication side effects?
4. Will it affect my fertility?
5. Will changing my diet help with my symptoms?

4. Do research about endometriosis before your medical appointments.

Researching your symptoms on the internet, what endometriosis is and, looking up what treatment options are out there, can help prepare you for appointments. I hate when I go into a doctor’s appointment and they just bombard me with a whole bunch of tests and medication without not much explanation and expect me to know what they are talking about and trust them. When I research things beforehand I can come with questions and a bit more knowledge about what they might ask me to do.

5. Talk to other endo warriors.

What I love the most about the internet is the community. I love that I can find a group on The Mighty about endometriosis and talk to others who might be going through the same process I’m going through. I love Instagram or TikTok where I can follow advocates who post about their experiences and the research they’ve done. Having the online community can really help in a diagnosis process because you have a place to bounce your ideas, symptoms, and other things from others who are going through the same things.

6. Get a second or third opinion.

I started having issues with pelvic pain in my early 20s, and I always had irregular, painful periods. When I started talking about them with my doctor I was told to just go on birth control and that it was probably my hormones. I finally started seeking out a diagnosis for endometriosis in my late 20s after my pain became so bad. I ended up with one doctor who was determined that it was interstitial cystitis and sent me to two specialists that told her that it was not in fact interstitial cystitis. This past year (after almost 10 years) I finally was referred to a specialist who was able to diagnosis me with endometriosis.

7. Ask about all treatment options.

Because there is no cure for endometriosis right now, it’s important to talk to your doctor about all treatment options and what is best for you. What kind of side effects will there be for the treatment?

No matter what part you are on your endometriosis journey,  I hope you know you are a strong warrior.