Since pain is subjective, endometriosis can be dismissed early in patients’ lives by their friends, parents, teachers, and even healthcare providers. People experiencing pelvic pain and painful periods have been told time and time again that their pain is normal.
But what do you do when you know your pain isn’t normal? Because if it were normal, why isn't everyone clenching their teeth or grabbing their abdomen in pain throughout their period? Why are other people able to workout during their period when I can barely get out of bed? Why am I, in the most extreme instances, vomiting and missing work from the pain?
Surely if everyone were suffering the same, then there’d be a solution with a television advertisement every 6-8 minutes, as frequently as a tampon commercial.
When you know something is wrong
Kelsey Nordstrom, founder of the popular Instagram account @endostrong, recently shared her story: that the online endo community was the most helpful resource in seeking an endo diagnosis. Kelsey reports that she saw more than 10 doctors in 2 years when her symptoms were at their worst before joining the online community that supported her intuition and encouraged her to seek out an endo specialist.
This story is, unfortunately, not uncommon. It takes people with endo symptoms more than five separate physician visits and four to ten years to receive a correct diagnosis, on average. Many people in online support groups report suspecting endo and not being able to find a doctor to take them seriously. And honestly, it is hard to make the argument that you have a disease that can only be confirmed through surgery under general anesthesia. A surgery that is so highly specialized that only a handful of surgeons know how to perform it well, not to mention the hoops that have to be jumped through to get insurance providers to pay for it.
Advocating for yourself and others
If you’re struggling to get diagnosed, here are some ways to advocate for yourself:
- Write everything down. All of your symptoms, even the ones you don’t think are endo. Joint pain? Tingling in your hands and feet? Headaches? Seasonal allergies? Write them all down and share them with your doctor. Also keep track of frequency and intensity of these symptoms if you can.
- Practice confidence. If you tend to shy away from confrontation or get nervous talking to people with authority, practice. Write down your mission statement. For example, “I’m here to discuss my symptoms with you today. In my own research, I suspect that I may have endometriosis, which is very common for women with my symptoms. I would like to rule out other possibilities through examination and discuss my options for further investigating endometriosis as a cause.” Read it in the mirror. Read it to a friend. You can even record it as a video and DM it to us, we’ll help.
- Be open minded. While you may check every symptom box in the endo list, know that endo symptoms are not exclusive to endo and it may be something else. Don’t automatically assume you’re being dismissed because your doctor doesn’t believe endo is the cause.
- Be collaborative. You and your doctor will have to work together to find the answer to your symptoms. Try and be a partner to your doctor. Offer your thoughts and perspective, but also ask, “what else can I do to help you (doctor) have a better understanding of this situation/these symptoms?” It may take some back and forth, but being a team player may lead to better answers and outcomes.
- Don’t give up. If you’re not successful with the first doctor, look for a specialist. This can be a frustrating and sometimes expensive process, but stay positive. You’re not just fighting for an answer. An answer will help you and your doctor make treatment decisions that will help manage your symptoms so you have a better quality of life. For help finding an endo specialist, check out EndoFound.
If you have struggled getting a diagnosis in the past, here are some ways to help advocate for others:
- Share your story. As you’ve experienced, having your endo symptoms dismissed is disheartening and isolating. Share your story with others going through the same experience to help them know they’re not alone.
- Talk about endo. Share endo facts, stories, quotes, content with friends, family, co-workers to normalize the conversation. With 1 in 10 people suffering from this disease, you may be shining light on symptoms that someone you know may be experiencing.
- Help us spread the word. Not to make this too self-serving, but DotLab is poised to launch the first ever blood test for diagnosing active endometriosis. The next generation of people seeking a diagnosis will find it a lot easier to get diagnosed via a blood test vs. an invasive and expensive exploratory surgery. Give us a follow and if you know someone who may be suffering from endo symptoms, please share this post with them.
This Endometriosis Awareness Month, speak up. Stories are empowering. Answers are powerful. Advocate for yourself and others by talking about endo.