Endometriosis: A Challenging Journey. A Powerful Voice.
There’s a quiet, painful condition that lurks among women throughout the world. It’s a condition without definitive cause or cure, affecting approximately 176 million women worldwide, not to mention the many women—particularly of adolescent age—who have not been properly diagnosed.
Endometriosis: it is largely overlooked due to “a lack of understanding in the medical community,” as observed by Dr. Grace Janik in an interview for the New York Times. However, to the millions of women battling this condition, its effects are very real. Endometriosis is the growth of uterine tissue on the outside of the uterus, causing intense pain, fertility complications, heavy periods, severe fatigue, and gastrointestinal issues.
Jennifer Flores of Kentwood Michigan serves as a powerful advocate for endometriosis awareness, and we at Be a Rose are honored to have an opportunity to share her story:
Endometriosis affected every piece of my life. I was constantly tired, nauseous, and hurting. Every month, I spent one week in a constant, blinding pain—for seven years before I was diagnosed. The first time I experienced symptoms, I was in eighth grade. The cramps came on so fast and so painful that I literally crawled on my hands and knees to the [school nurse’s] office, crying the entire way. I fainted from pain multiple times in high school, which was humiliating. I would sweat so much from the pain, it would leave my desk wet. For so long, I felt angry, alone, and scared. As I grew up, I realized it wasn’t my parents’ fault, because they just weren’t educated about endometriosis. And my pediatrician wasn’t prepared or educated enough to handle a 13-year-old patient with that kind of problem.
I was tested for lupus, diabetes, appendicitis, and at one point, they told my father it was potential kidney failure. I was misdiagnosed nearly a dozen times. When I was 15, one doctor told my parents that I was a drug addict seeking attention. Aside from ibuprofen, I had never taken drugs in my life! After that, I completely shut down. I dealt with the pain on my own and stopped talking about it. This was a nightmare. I was too embarrassed to go anywhere when I had my period because I was petrified of the excess bleeding. I was a thin girl, but the bloating would be so severe that it would look like I was pregnant, which, again, is very embarrassing for a teenager. The pain alone would cause me to see spots, and I would get dizzy and incoherent.
At 17 and out of high school, I was still in significant pain and missed a lot of college classes. My work performance suffered each month because I could barely walk, and as a waitress, that’s a fairly essential job function. My boss at the time had recently been diagnosed with endometriosis, and upon overhearing a conversation with my coworker about my symptoms, she actually called my mother—who she knew as a previous coworker—and told her to get me to an OB-GYN right away.
Because my symptoms had been misinterpreted and ignored for so long, it took me two years to finally open up and tell my doctor the entire story. Once I shared my entire background, and how severe the pain really was, she skipped any additional testing and scheduled surgery. She truly saved me—not because this disease is fatal but because I was so disheartened by the lack of support.
I was finally diagnosed at 19 years old, and around the same time, I was told I could never have children. I wasn’t considered infertile, but the damage to my uterine wall was so severe the doctors didn’t think I would be able to carry a baby to full term. This caused a lot of turmoil. Not only is that difficult to understand at 19, but the man I was living with and planning on marrying left me shortly after I was told, telling me he didn’t want to be with someone who couldn’t give him children. As a teenager, that was incredibly overwhelming and hurtful. In addition to the pain and the anger of receiving a diagnosis only after so much damage had been caused, the person who was supposed to be there for me didn’t want me anymore.
The medical expenses of endometriosis are extortionate. To date, I’ve had five surgeries to excise the endometriosis, as well as tubal ligation. I was lucky enough to have insurance because I would be bankrupt without it. When I was 20, I was put into “chemically induced menopause” by a drug called Lupron Depot. It essentially shuts down your ovaries and stops your body from producing estrogen, which is what causes endometriosis to grow. This meant that in the middle of summer, at 20 years old, working as a waitress in a pizza restaurant, I was having full blown hot flashes, night sweats, and mood swings. The drug also didn’t wear off the way that it was supposed to. I ended up needing hormone replacement drugs for a brief period of time in order to restart my ovaries, which sent me through another round of “puberty” at 21 years old.
The surgeries are done laparoscopically, so the incisions aren’t terribly large, but I do have scarring. I incurred an infection during three of the six surgeries, which landed me back with the doctor and on antibiotics. This is yet another cost, and another consequence that stems from this disease.
When I was 22, I became pregnant for the first time. Unfortunately, around 11 weeks into the pregnancy, I had a miscarriage. The day of the last ultrasound, when they turned the monitor away from my husband and me, so we couldn’t see the screen because there was no heartbeat, was the worst day of my life. It felt like I had been hit by a truck.
Unfortunately, my body didn’t seem to recognize that my baby hadn’t survived, so I ended up needing a dilation and curettage. One thing that people don’t seem to understand is, once you’ve been diagnosed as having a miscarriage and have to schedule a procedure to have the baby removed from your uterus, it means you have to walk around carrying the baby until your procedure. In my case, it took three days.
It’s such a loss, and it hurts so very deep. At that time, it felt like endometriosis had chipped away and taken every piece of me that it could.
Early detection could have saved me from a very serious case of depression. Although I have no regrets, and I am glad to have become a very strong person because of this entire situation, I still struggle with the anger of what happened to me. I overcame the lack of understanding from my loved ones, but I have a seriously difficult time trusting doctors. I still cannot understand how a group of educated pediatricians never knew to check for this disease and never referred me to an OB-GYN because of my age. They very nearly took my ability to have children.
The doctor who diagnosed me is my doctor to this day. She has performed all of my surgeries, including the dilation and curettage, and also delivered the two babies that I was able to carry to term. She is the only doctor that I trust because she was the first person to hold my hand and say, “No, you are not crazy. There is something wrong here.”
Today, Jennifer speaks out and shares her voice on endometriosis as often as she’s able in order to “keep it in front of people” and remind them that this condition is very real and very deserving of our support, research, and awareness. Upon reflection of the painful and invasive surgical options currently available to “manage” endometriosis, Jennifer asserts:
The best way to challenge this and to support more research is to DEMAND more research. Stop asking women to allow their bodies to be cut open and to accept these violent attempts at relief instead of providing a cure.
How can you help? Support endometriosis research through the World Endometriosis Research Foundation. Further, sharing stories such as Jennifer’s helps to challenge the stigma and spread awareness. For Jennifer, her pain and turmoil was ignored, misjudged, and underestimated for far too long. Women and girls deserve BETTER. Now is the time to speak and lend support!
Be a Rose is honored to share Jennifer’s voice on this important issue of women’s health. Through our research, blogs, and women’s health workshops, we at Be a Rose are privileged to engage the community and create a positive impact in women’s lives. Please consider joining the conversation by following Be a Rose on Facebook and visit our invitation to take action with Be a Rose!
By: Aanee Nichols with Jennifer Flores