Rachel's Story: Life with Endometriosis

Most girls get their first period between the ages of 10-15 years old. When I got mine at 13, perfectly average by the books, I was told the exhaustion, nausea, and mind-boggling searing pain spasms were all perfectly average as well. I wish I had known then what I know now -- that it was not normal at all.

Between the constant disbelief I received when I expressed concern over my severe symptoms, and the lack of education about the possibility of a bigger health problem, I was clueless. A decisive diagnosis of endometriosis didn’t come until after my symptoms peaked at 19 years old, resulting in a near death hospitalization. 

Rachel Hospital

Between the constant disbelief I received when I expressed concern over my severe symptoms, and the lack of education about the possibility of a bigger health problem, I was clueless.

Since being diagnosed with endometriosis, I can say firsthand that in the face of adversity, a positive attitude is the greatest weapon you can yield. Having faith in yourself to persevere, and an unwavering hope that each day will be better than the last is what keeps you going. My optimism stems from the desperate hope that someday things will be better -- that my health will be better and that my treatment options will be better.

Ultimately though, it all comes down to treatment options. Proper treatment is the surest way to improve quality of life and overall health.

When I first received my endometriosis diagnosis, my doctor explained that having a period each month was causing my organs and intestines severe damage -- putting my long term health in jeopardy. Essentially, the more periods I would have, the more damage my body would endure.

Looking for a solution, I turned to science. The intrauterine device (IUD) was new to women’s health at the time, presenting an opportunity to stop women from experiencing a period for extended lengths of time. My doctor identified this innovation as a potential treatment option for my endometriosis. By having an IUD in place, I could prevent my periods from occurring for five years. Essentially, pausing my condition exactly where it was and lowering the severity of chronic pain and other symptoms.

Ultimately though, it all comes down to treatment options. Proper treatment is the surest way to improve quality of life and overall health.

I got an IUD placed at age 21, and from that day forward my symptoms began to stabilize and my quality of life slowly returned. This breakthrough device is what allows me to sustain the high quality of life I am currently lucky enough to enjoy.

Rachel Healthy

But what happens next?

When my five year solution expires and the IUD has to come out, my disease will continue to progress. My endometriosis will once again be wreaking havoc on my uterus and internal organs, and could begin to put my fertility at risk. As someone who has always dreamt of being a mom someday, it is a terrifying thought.

Looking at the current treatments available to women, I don’t have very many options. I could use another IUD and continue to pause physical deterioration, but this also prevents my ability to become pregnant, making it an inadequate solution for the next phase of my life. If I want to become a mother, my only choice is to allow my condition free reign and hope for the best in fertility, and safe passage through a pregnancy.

I don’t know about you, but “hoping for the best” just isn’t tangible enough for me. I am counting on future innovations to give me better options.

Fortunately, new options are being developed as we speak, but they are still in the clinical phases. Traditionally, clinical stage treatments are considered broadly off-limits to patients who need treatment options now. Thankfully,  this is a misconception. Clinical trials are where patients, like me, can find and access the treatments we need. Right now there are 64 studies actively looking for endometriosis patients.

The longer these studies go unfilled, the slower progress moves, and the less helpful treatment options will be available to help women everywhere. Lack of patient participation in the clinical phases makes it literally impossible for treatments to reach the greater population of people who need them. We need brave patients, like you and me, participating in the research process.

I don’t know about you, but “hoping for the best” just isn’t tangible enough for me. I am counting on future innovations to give me better options.

It is incredibly important that both men and women are participating, especially when it comes to a women's only disease like endometriosis. Women are already at a disadvantage, as up until the early 1990s we were excluded from the majority of research studies. (Yes, it’s crazy, and it’s true!) This means that researchers and scientists know less about women’s health as a whole, and as a result we have fewer options to treat the illnesses and diagnoses’ unique to us.

While participation in clinical trials may seem intimidating, it allows you to make a lasting impact in the lives of women today and forever. Many patients who have participated in a trial describe the experience fondly, citing the quality of care as incredibly high. In addition to being rigorously monitored for safety, most trials compensate for travel expenses and medical bills. The biggest benefit of all, however, is the opportunity to start using a new treatment before it is available to the general public. I encourage all women to do your research, consider all your treatment options, and, join forces to advance the quality of women’s health.

I hold out hope that clinical research will result in better treatments for my endometriosis, and the diseases of countless others.

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Rachel is a passionate women's health advocate and an endometriosis patient herself. A graduate from Northeastern University, she is plans to make a difference in healthcare.