Breaking the silence: my life with endometriosis

This March will be the 33rd National Women’s History Month. Since 1987, this month has honored what women have fought for and what we continue to fight for. It also serves as Endometriosis Awareness Month. Endometriosis is one of the most common diseases in women. Although one in 10 women have it, very few people have heard of it. Endometriosis refers to a condition when tissue similar to the kind that should be growing inside the uterus develops outside of the uterus anywhere in the pelvic region and in rare cases, the head and chest; this causes severe pain and heavy bleeding, among other symptoms, and is one of the leading causes of infertility in women. Sufferers often go unnoticed and uncared for because society normalizes their pain. 

They are forced to endure their pain in silence. For this reason, along with the individualized symptoms of the disease, endometriosis often goes misdiagnosed or underdiagnosed for a long time. Currently, there is no cure due to lack of research, furthered by budget cuts like the one President Trump implemented through his budget proposal on February 10; women who come forward about their pain are called “attention seekers” and “liars,” but I want to set the record straight. I have decided to come forward about what it means to live with endo as it is colloquially called.

I was 12 when I was inducted into the club of womanhood. I thought nothing of it, except that it was weird that my mom’s friends were giving me goodie baskets. When I was 14, I knew something was wrong with my body. I started feeling pain in the lower part of my body for more than one week each month. It was every day. To paint a picture, imagine minding your own business, working, standing or existing, then BAM: you go all clammy and fall forward, holding what is in front of you for support as you crumble to your knees. There is a sensation that runs up your spine and down to your pelvis like somebody is trying to stab you from deep within your organs. The only thought that courses through your mind is: I’m dying. Maybe there are people nearby, so you bite your tongue, fighting the innate urge to scream. Sometimes this lasts for a few minutes, perhaps an hour or more. Once, I was in this kind of pain for an entire day. You never know when it will strike. You feel twinges and pokes daily that remind you that you are never in the clear. Your body lies in wait to torture and destroy you. 

 I was told that pain came with beauty and periods, so I accepted that and swallowed my agony. This continued for about a year until I spoke candidly with my mother. I let it slip that I was in pain on a daily basis. The next thing I knew, I was sitting in my pediatrician’s office. I waited eagerly because I was sure my doctor would have the answer.  Instead, the response I received was that I was unlucky to be cursed with genes that gave me terrible cramps. I saw another doctor who said something far more patronizing, “You’re just overweight.” This one was painful because I respected this doctor immensely and I already struggled with my weight. Having a doctor blame me for my chronic pain was unbearable.

When I was on a new diet I was riddled with new insecurities, so I went for a third opinion. I was told that it was my anxiety playing tricks on me. I bought that answer because no one I knew was going through this and the doctors had to be right. It was only after this that I started researching on my own and first discovered the term “endometriosis.” Following a consultation with Dr. Google and Nurse Buzzfeed, I made the conscious decision to begin advocating for myself. 

I finally got surgery last year after trying every homeopathic remedy and three different birth controls in a period of six months. The thing about endo is that the only way to be certain about diagnosis is by having a surgery called a laparoscopy which entails making an incision underneath the naval where a camera is put through. If doctors find endometriosis, they will create more incisions to either ablate (burn off) the tissue or excise it (cut it out). I felt a sense of relief and validation when I awoke from surgery and had a name for my pain. I had endometriosis and the doctor had removed what she could by ablation. For the first time in four years, I enjoyed life without being afraid of my own body.

A month after surgery, I took a three week trip to Italy where I walked the cobblestone streets without a care in the world while indulging in scoops of stracciatella gelato. I finished my last year of high school and sashayed across the graduation stage with my hard-earned diploma. Then, I started my first semester of college. 

However, surgery does not put the “end” in “endo” because the tissue always grows back. When that regrowth occurs is uncertain though; some have months, others have years and I was blessed with a pain-free year.

I am back to living day by day. My story mirrors that of many who are included in the one in 10 statistic. However, I am not coming forward because I want pity or attention. I do not want to be an “Endo Girl” as I do not want my pain to define me. If anything, I want to take my pain and turn it into power. My power lies in the courage to legitimize the narrative. It allows for change to happen: change that will help those who feel isolated know that they are not alone, change that will spark more funding for research to be conducted and a cure that can be found because surgery and pregnancy are not sustainable options. Until then, Endometriosis Awareness Month is important not only for me but for the 176 million women I suffer alongside because we wish to be seen and above all, believed. 

If you have any questions about endometriosis refer to any reputable medical journal or websites like https://www.speakendo.com to learn more.