My Endometriosis Health Advocate

With a disease such as endometriosis, we tend to see doctors when we are at our worst. I know that is at least the case for me.

I rarely see my gynecologist or endocrinologist when I feel my best. My pain makes it hard to answer all my questions and concerns when overwhelmed.

Even though I am an adult, there are times when I need a health advocate that is not myself. When battling endometriosis, I am lucky enough to have an additional advocate.

This endometriosis advocate would be my mom.

Having my mom as my health advocate

When endometriosis first started causing problems for me, my mother was the only person to believe me. Everybody else in my life believed that I was feeling “normal period cramps” and I was just being dramatic.

I honestly do not know how I would have made it through my teenage years without having my mother as an advocate.

My mother defended me against my family members. Then she had to fight with doctors to have me taken as a serious patient.

Even more, she then had to fight with the school board to allow me to miss days from school, provided I kept up with my work. My mom had to fight so much more than an average parent to make sure I was cared for in every aspect.

Being my own advocate

Today, I work hard to be my health advocate for my endometriosis.

No support groups were available when I started my journey to get diagnosed and treated. It was simply a different time.  

In most cases, the gynecologists would not provide much information on endometriosis. This is because they assumed that a teenager could not suffer from endometriosis.

Due to the lack of support from medical professionals and the impossibility of connecting with others dealing with endometriosis, it was a very lonely time. It involved spending a lot of time researching the medical treatments that doctors suggested and still feeling like I was taking a massive leap of faith following doctors down the road to treatment.

While my mom does not live close to me today, she is still one of my healthcare advocates. Prior to doctor appointments, I still have a conversation with my mom.

I list all the questions and concerns we can have; therefore, I have everything in front of me during the appointment.

My mom is the first person I call after I get in my car to leave the doctor’s office. We discuss how I felt about the doctor, the answers to the pre-appointment questions, the testing the doctor wants to perform, and what kind of treatment or care they are offering.

Additionally, there are resources available now that were not originally available. The internet has opened a whole new world for health advocates.

For example, I can look up new medications or treatments in our community. This would have been very beneficial during the early years of my treatment and diagnosis phase.

Do you have a health advocate that helps you out? Let us know in the comments.