Living With Endometriosis: Here’s How I Found the Silver Lining

I could write an epic about how much I hate Endometriosis. Between how it’s destroyed my body, caused me years of physical and emotional pain, and interrupted all areas of my life, Endometriosis has forever altered my life and changed me as an individual. The negativity is overwhelming — I could spend every day hating my situation and cursing the universe for giving me this disease. But, what would that accomplish?

Instead of dwelling on the negative, I decided to flip the script and find the “silver lining.” Surprisingly, I found that Endometriosis has educated me in more ways than one. Here are five positive ways Endometriosis has changed my life. 

1. I learned a lot about vaginal health.

Before my Endometriosis diagnosis, I knew absolutely nothing about my body. Sure, I knew that I had a monthly menstrual cycle, and sometimes, random discharge, but that was it. I was clueless. 

As young girls, we’re often shamed for our body parts, our sexuality, and our overall womanliness. We’re not educated about the important structures and functions of the female reproductive system. We’re not taught what’s normal or when we should see a doctor. We learn to refrain from asking questions.

Endometriosis (in addition to the many laparoscopic surgeries, treatments, and pelvic floor dysfunction issues I’ve had) has forced me to learn about my anatomy and my body’s functions. For example, I now know that when I feel that tingling pins-and-needles sensation in my hips and legs it means that I need to relax my pelvic floor muscles and nerves. 

While it’s true that I may not know everything there is to know about the female body, I can say that I have a better understanding of the reproductive system and greater respect for my vagina.

2. I figured out what it means to be an advocate.

When I got my first symptoms as a young girl, no one talked about Endometriosis. My gynecologist never mentioned it. I was referred to two specialists before someone ever said, “I think you have Endometriosis.” Ten years later, I’m an Endometriosis blogger and the disease isn’t exactly a secret anymore. 

There are countless blogs, websites, advocacy groups and individuals, hospitals, doctors, celebrities, every-day women, and loved ones talking about this disease that affects almost 200 million women worldwide. There are even Endometriosis commercials on primetime television.

This generation is coming together as a unified voice. We are demanding that the world take notice of our suffering and that the medical field does something about it. I am a part of this movement.

I wish that we didn’t need to advocate. I wish that we were all diagnosed in a timely manner and treated with dignity. I wish that a cure existed. But, even without these things, it’s important to note that we’re making these dreams a possible reality for the next generation of Endoviduals, and that’s empowering.

3. I learned to put myself first.

Before Endometriosis, I was obsessed with living up to other people’s expectations. I went to college against my will and maintained a 4.0 GPA while living with debilitating Stage 4 Recto-Vaginal Endometriosis. I didn’t date, I forced myself to attend family affairs and friends’ parties when I was in Endo agony, and I was afraid to ask for accommodations at work.

I suffered extreme physical pain and emotional distress for years. Then, I decided that I’d had enough. I quit college, found a new surgeon, and dated a man that my family didn’t approve of. I stopped working extra shifts that aggravated my pelvic pain and escalated my Endo symptoms. I stayed home when I was having flare-ups or whenever I was in pain (or just felt like staying in) and I enrolled in an equine program.

I stopped giving a fuck about what other people thought of me and what other people wanted me to do. I finally listened to my body, and now, I’m a happier, healthier person because of it.

4. I found out who my real friends are.

There, I said it. To those of you who ask me how I’m doing and tell me that we need to get together again soon, before quickly and ever so quietly vanishing off the face of the planet, I know who you are. And, I know that you aren’t my friends. You say hollow words to feel like a better person. 

I used to get really upset and discouraged whenever someone who I considered to be my closest friend disappeared out of my life. However, I learned that those who aren’t there for me when I’m at my worst don’t deserve me at my best. 

I’m a loyal bitch and I expect loyalty in return. Now, I prioritize my time for friends who stuck by me (AKA the people who visit and check in on me regularly). I value the people who are still a part of my life, regardless of the changes in my abilities and the hardships that I’ve endured. I know who my real friends are, and I’m proud to call them my friends.

5. I’ve gained an understanding of what it means to be a woman with Endometriosis.

From a very young age, girls are taught that vaginas are icky and that periods are gross. We’re taught to think “nice girls” don’t have sex and that just mentioning the reproductive system is forbidden. Don’t ask questions. Suffer in silence.

I’ve lived with Endometriosis for more than 10 years and I’ve dealt with an endless array of symptoms, pain, useless and rude doctors, willfully ignorant people, blame, shame, and plain sexism. I’ve lost my patience.

Today, the majority of my conversations today focus on Endometriosis and pelvic health — I’m breaking society’s rules. I talk about periods at the dinner table. I talk about pelvic wellness and reproductive health in mixed company. I teach women to question what’s going on with their bodies and to question their doctors. I am normalizing vaginal health education. I’m fostering a change in societal norms after generations of silence and shame. As someone who has always followed the rules, it doesn’t get more badass than this. 

Have you found a silver lining during your Endo journey? Let us know in the comment section below.