“As I sat in my car in the parking lot of my doctor’s office with yet another pamphlet for Dysmenorrhea (aka painful periods) in my hands, I couldn’t hold the tears back any longer. I began to cry because I knew deep down this was all wrong. This was not just a painful period. Every ounce of me wanted to run back into the doctor’s office and tell him to figure out what is wrong with me, no matter what it takes. But that’s not what happened. Instead, I put my car in reverse, pulled out of my parking spot and drove away in tears. Silenced, once again.
As it turns out, I would find out that I have a chronic illness called Endometriosis (which has no known cause or cure and can only be diagnosed with surgery). One in ten women have this chronic illness, yet somehow it takes an average of 6-11 years to actually diagnose. YEARS to diagnose something that almost two hundred MILLION women have. YEARS of women suffering… silently. Why? Because female issues are so often made out to be something that we’re not supposed to talk about. It’s time we step up and break the stigma.
Endometriosis is when tissue resembling the lining of your uterus, which is supposed to shed every month, instead grows outside the uterus, sticking to your other organs. The tissue still responds to the hormones in the menstrual cycle, building up and shedding as if it were still in the uterus. This causes internal bleeding and symptoms like extreme bloating, painful intercourse, painful periods, pelvic pain, chronic fatigue, infertility (which for a woman who wants to have a family some day can be very scary to hear), and more.
I am one in ten. And the road to my personal diagnosis was anything but easy.
At eleven years old, I started my period. It was super inconsistent, to the point where I didn’t have it for five months. At fourteen, I needed to go on birth control to regulate it and control hormonal acne. For the next few years, they became more regular. I don’t remember my periods ever being too terribly painful. Then about five years ago, my period started getting all out of whack again. I would have it heavily every other week for seven days straight. It was painful, but I always thought that this was just the part of being a woman. That you have to deal with because women aren’t supposed to complain about that… right?
Shortly after, unexplainable things started happening to me. I had migraines that would leave me in a ball on the floor of my closet. I had bruises all up and down my legs from low iron. My stomach bloated so badly at times that I looked pregnant. Everyone would poke fun at me for taking a nap every day, but I would be so completely exhausted and fatigued that I felt like I couldn’t keep my eyes open. I started to have intense lower back pain, hip pain, and pelvic pain out of nowhere. I had visible blood in my urine for six months. I had stomach pain that was so severe I would hide in the bathroom at work or cry while I was out with my friends. But then I would walk out and act like nothing was wrong.
Numerous doctors appointments. Blood work. Allergy tests. Diet changes. Prescriptions. CT Scans. X-Rays. Ultrasounds. Pelvic exams. MRI’s. A cystoscopy. Did any of these provide an answer for me? Nope.
I really started to think I was absolutely losing my mind. (Many women with endometriosis feel the same exact way.) Maybe all of my doctors are right. Maybe it is all just in my head. Maybe this pain is normal and I need to stop complaining. Maybe there is nothing wrong with me. When you try to fight for your own health for so long without any answers it completely breaks you to the point where you’re done fighting. I gave up. I was done feeling stupid and belittled by others. So for a long time, I decided to be silent. No one knew I was in pain.
Even my family didn’t know the extent of my pain. I would say comments here and there about my back or my stomach hurting but I didn’t really like complaining or putting a burden on others. When my own doctors didn’t believe me and made me feel stupid, I was afraid my family would think it’s all in my head, too. Having my doctor not believe me was already enough. When I finally opened up to my mom later in life because I was debating whether or not I should get a laparoscopy procedure, she encouraged me.
Even when I was suffering I would still for the most part go out with my friends or go to work. But I do think I definitely missed out on my quality of life. I may have been there physically but mentally all I could think about was my pain or when I would be able to leave and go home.
I went to a routine gynecological checkup and mentioned some of my symptoms to my doctor. He mentioned this weird word: Endometriosis. Then he asked me a few questions.
‘Is your period debilitating to your every day life?’
‘Are you in the hospital every month due to your menstrual cramps?’
‘Oh, then maybe you should just self-soothe your pain with a heating pad and medicine.’
This is a total joke. Are you kidding me? My pain had to be described as ‘debilitating’ in order to be taken seriously? I had never been so angry at a doctor before in my life. I was absolutely infuriated. That day I went home and decided that I was going to fight for myself just one last time. I looked up the silly word I had never heard of before and after a lot of research, I intuitively knew deep down that endometriosis was my answer.
I fought and fought hard. The doctor that performed my surgery said he was almost certain I have endometriosis, but he didn’t suggest doing the surgery since there is no cure. So, it was completely up to me. I insisted I needed to know for certain. If I didn’t push, he wouldn’t have done it. At this point, I found a doctor who listened to me. And after having the diagnostic laparoscopy and hysteroscopy, I finally got the resolution I needed for so long.
I am terrified of not being able to have children some day. It’s my biggest fear. Ever since I was a little girl I never knew what career I wanted to pursue when I grew up, but one thing I always knew I wanted was to be a mom with a big family. My future is uncertain and I can’t imagine if what I’ve always wanted is taken away from me.
Going through such a tough journey for a diagnosis taught me so much that I wish every woman would realize. It is SO crucial to be your own biggest advocate and stick up for yourself. The only person that knows your pain is you and you know your own body. You are so incredibly strong and resilient. You deserve to have answers, fight until you get them.
Women suffer through agony because we’re told that period pain is ‘normal.’ It. Is. Not. Normal. If you are in severe pain, there is no need to be silent. It’s not in your head. You don’t just need to suck it up. You’re not crazy. To the women suffering on a daily basis and WAY more than I am: I see you, and I know the struggle you are going through. Keep fighting. You got this.”
This story was submitted to Love What Matters by Kassidy Jennings. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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