March is Endometriosis Awareness Month and I’m 99% Sure I Have It.

While March is over, the question still remains, how do we make care more accessible for people looking for answers?

My life is built around my cycle. I spend the weekend before my period prepping my space and making a batch of soup for the week so I have something easy to eat when my appetite comes back. For the first few days, I can barely move. Everything hurts and I can’t get comfortable. There have been nights where I wake up in so much pain I thought I needed to go to the ER. And besides all that I experience behind closed doors, the most frustrating part is constantly having to prove my pain.

This has been my experience for years. It’s caused me to develop an overwhelming amount of anxiety about my cycle, leading me to look for answers as to what’s causing this debilitating pain every month. It was through that research, and some testing that I’m 99% sure I have endometriosis, but it could be something else. The lack of access to care has made it difficult to receive an actual diagnosis for many. My story isn’t unique, it’s all too common and there lies the issue. 

About 1 in 10 women and people who menstruate have endo. I’ve seen so many women this month on Instagram share their endometriosis journey. Some who have made it their whole brand and mission to support others with the disease. Others sharing their pain and frustration with their feelings being invalidated by their doctors. And it gives me pause… 

While my hope is that current and future generations may have answers and better access to care, I can’t help but think about how understudied this condition is.  Clinical research for this and so many other conditions did not include women, women of color, or people of color AT ALL. But that’s a story for a different day. 

Getting properly tested and a confirmed diagnosis has been an ongoing challenge for many of us who are still waiting. 

But, what happens when things are out of your control, because the healthcare system in the US was not designed to make care accessible to all? Some of the leading endo providers in my state can’t take a patient paying out of pocket if they are on state insurance.

Or the woman on her IVF journey who has had multiple unsuccessful rounds over the years and later finds out that endo was the reason why this journey has been especially difficult.

There are so many scenarios, but the most common thread is how much time and energy goes into being heard, feeling seen and being validated in our experiences.

For now, I can only focus on what’s in my control. Eating well and moving my body. I can’t afford to see an endo doctor or get surgery at this current point life. I’m tired of living in pain and until I can afford those things as secondary or tertiary options, I’m doing everything in my power to improve and manage my symptoms. 

Part of the reason why I’m doing any of this is because I’ve always wanted to be a mom. My partner and I are planning to start a family in the next couple of years so while I’m in this limbo state with being a doula and caring for my clients across all stages of their journey, I’m also taking this time to become the healthiest version of myself. My goal is to share what I learn in hopes that it helps more women who are sick and tired of being sick and tired feel more supported. 

No matter where you are in your fertility, pregnancy, or postpartum journey, I’m here for you. 

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