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When No One Gives A Shit That You Have Endometriosis

 

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When I was a senior in college, all that I could think about was finishing school without going insane. I was a fashion design major at the Academy of Art University in San Francisco and I was sewing my senior collection eighteen hours a day. When it came down to my second to last semester, I was thrilled to have one of the shortest and easiest classes required for my degree — Computer Aided Design for Fashion. This class took place in a quiet, dark basement and lasted about three hours, but that felt like taking a nap in a room full of puppies when compared to my ten-hour sewing labs.

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One day before the end of class I was trying to focus on the lesson, but I started to get really bad cramps. Like really bad. I kept getting these waves of pelvic pain that were intense enough that I had to physically curl over in my seat. I was trying to focus on my breathing and be patient since the class was minutes from ending, but suddenly it was like I peed myself. There is no other way of putting it. An abrupt torrent of body fluid was gushing out of me and I knew it was blood. I was beyond mortified and I just remember looking at that clock above my teacher and waiting, just praying that no one would smell it. When the class was over I sat, uncomfortably waiting for all my other classmates to leave while I pretended to be writing down something very important. Once the coast was clear, I bolted to the bathroom red faced and teary.

Once I got to the bathroom, I had no idea what to do or how to cover myself up. Now, for those of you who have lived in San Francisco, I am sure that you are thinking, "Well surely you had a sweater on hand," but alas you would be wrong. On one of the only days in my entire four years that I lived in that city, this happened to me on a hot October day when I wore high-waisted mom jeans and a crop top. Had this happened literally any other day, I would have been covered, but it wasn’t any other day, and that is how the most embarrassing moment of my life came to exist. In order to get the blood out, I had to remove my pants and wash them in the sink while in my underwear. You would think that anyone with a heart would be inquiring as to what happened or wondering if they could help, but everyone just treated me like a leper. A panty-wearing, pants-washing leper.

Well, spoiler alert. Not only did the blood not come out, now I had wet pants that wouldn’t dry. So I thought what any terrified young woman would think: “I’m going to run away and call my mom." Never in my entire life has a commute felt so long. I kept my head held high while I walked and acted like I had no clue what everyone was staring at, but man did it hurt me. I will never forgot being on the subway and looking up to see a woman standing across from me making a face at me like I just exclaimed my love for Nickelback or the KKK.

Once I had I survived the trek home, I managed to get a hold of my mom. We talked on the phone and she said she had always wondered if I would get cramps as bad as she did and that this sort of thing had happened to her plenty. I had thought that I was in the clear since I was in my twenties, but it turns out that since I got my period very late (sixteen) and had started taking birth control shortly after that, I never experienced a truly normal cycle. So when I stopped taking birth control (because it made me an insane hormonal mess), my cycle reverted to what it would have been like normally. And let me tell you, my “normal” is another person’s hell.

I had always been aware of my mother’s cramps and how they affected her life — she used to have to be hospitalized monthly like clockwork. She once said that her cramps were so debilitating it made childbirth seem easy. She had been through the ringer, and yet anytime I would try to express how much pain I was in to coworkers or friends, I was brushed off. I got a lot of, “oh ya my cramps hurt too” or “yeah I get kind of moody sometimes." I once even had a female boss say, “It's OK. Sometimes when I’m on my period I feel like being a baby too” when I had to call out sick from work. Everyone made me feel like I was faking it, or I was exaggerating. I didn’t understand how anyone could be going through what I went through every few weeks without missing work or dinners or birthday parties. It never occurred to me that that was because they weren’t experiencing what I was. They weren’t experiencing one tenth of what I was, because what I was experiencing was not normal.

So, I asked my doctor about it. I said I was in pain and it did not seem normal. My doctor’s reaction was to prescribe me Percocet, an incredibly potent and highly addictive painkiller. Well, turns out that Percocet just makes me puke my guts out for days on end, and therefore did little to help keep me at work. So they prescribed Vicodin (same reaction) and then codeine (same reaction). Then, for another year or so, I went on without any medication. At this point I was alternating between getting about two periods a month or getting just one period that lasted two weeks. I would pass out on my bathroom floor, I would throw up from the pain, I would remain bedridden in the fetal position for hours on end, but my doctor was convinced that this was normal, so I didn’t push it.

When my doctor diagnosed me with endometriosis, I was as relieved as I was terrified.

A few years later we moved to Austin, Texas and I had to find myself a new doctor. This was the first time that I every received a diagnosis. I had endometriosis. For those of you who are unfamiliar with this disease, endometriosis in a condition that causes tissue, much like that of your uterine wall, to grow outside of the uterus. This tissue then proceeds to have a period every time that your uterus does and with no place for that blood to drain each month, as the uterine lining does during menstruation, the cells form cysts, lesions, and scar tissue. All of these growths can then lock together what are normally free-floating organs such as your ovaries, bladder and bowels. In some extreme cases, endometriosis has even been found in the lungs. This “stuck” feeling, as I like to call it, causes all sorts of strange issues, like excessive diarrhea (from growths on your bowels), sharp pain in your ovaries when you cough or stretch (because your ovaries are stuck to other organs of your body now), and extreme fatigue (because your body is trying to reabsorb excessive amounts of free-floating blood). Some doctors have stated that extreme endometriosis patients experience higher fatigue levels than stage four cancer patients, and yet we are told to suffer in silence or mask our pains with exceedingly addictive opioids.

My diagnosis was the first time I realized that I was truly sick. I hadn’t been a wimp, or sensitive. I had been beating myself up for nearly ten years for something that I couldn’t control. I had spent years telling myself I was disgusting and unhygienic and that was why my underwear and clothes were continually being ruined. I was convinced that I was intolerant and that was why I couldn’t bear to get out of bed or off the floor. I had spent almost half of my entire life feeling like I was constantly disappointing everyone for missing out on this dinner or that birthday. It never ceases to amaze me how quick we women are to doubt ourselves. I once got a fracture on my shin in a sparring match at my black belt test for Tae Kwon Do and I still completed and passed the test — including breaking 16 1” pine boards in rapid succession. And yet, when it came down to this pain, I was sure that I was exaggerating it or had a low pain tolerance simply because my doctor told me so? Because they didn’t believe the pain that I was in? It is amazing the kind of gaslighting that I received from people who took the Hippocratic oath to do no harm.

When my doctor diagnosed me with endometriosis, I was as relieved as I was terrified. I found out that I had been losing eight times the normal amount of blood during my cycle — explaining my constant tampon changes, but also meaning I was at risk for anemia. I found out about my treatment options — mostly that they were incredibly limited and that there was no known cure, not even a hysterectomy. I found out that my diet could play a huge role in the progression of my endometriosis — meaning no more gluten, meat, dairy, alcohol or caffeine. I found out that my odds of being infertile were now around 40% — endometriosis is the leading cause of female infertility. Most shockingly, I found out that in the United States alone, over 7.6 million women have this disease. Let me say that again for dramatic effect: Seven. Million. Women. The fact that my diagnosis was the first time that I had even heard of this disease was baffling to me, especially after discovering how prevalent it is.

It was around this time that I started attempting to look into any new research being done on endometriosis, and was shocked to find virtually nothing on the subject. After much digging, I found some pretty outrageous statistics that bring to life how little the medical world cares about this life-ruining disease. The sheer scale of this disease alone makes it qualify as a “quality-of-life” malady such as diabetes and it even affects almost half as many women as diabetes. However, when you look into the amount of funding research being done by the National Institutes of Health (NIH), there is barely a cent going towards endometriosis. In fact, if you look at it on a case-by-case basis, for every person with diabetes, there is $35.66 spent annually on research for them, whereas with endometriosis, there is a measly $0.92 spent. That means that my inability to move for eight hours, my profuse vomiting, my never-ending torrents of blood, all of that pain is worth less than a dollar of annual funding to the NIH. And that is if you only include the women who have currently been diagnosed. I thought that I was an anomaly in that it took my sea of doctors a decade to diagnose me. However, the average amount of time it takes a woman to be diagnosed is even longer than my case — roughly twelve years. Can you imagine how many women are out there right now bedridden and being told that what they are experiencing is just a woman’s lot in life? It makes me nauseous just thinking about it.

Many doctors have spoken on the subject of this severe underfunding, including Tommaso Falcone, a doctor who has spent years writing practice recommendations for endometriosis for the American College of Obstetricians and Gynecologists. Falcone states, “It’s obviously underfunded…If we look at what I’m doing today in the management of endometriosis for women, it’s not all that different than what I did ten years ago, so and that’s what’s the pathetic part.” And while our current estimates are that this disease affects 7.6 million women in the US, Falcone ventures to guess that as many as 20 million are affected and undiagnosed.

So if this little-understood disease is ruining so many people’s lives, bankrupting them, causing jobs to be lost and relationships to crumble, why aren’t we funding research on it? Why doesn’t anyone give a shit? Because it only affects women and trans men. In the eyes of the male-centric medical world — we are unimportant. In their eyes, it is our lot in life to suffer, and there is no reason they should spend their time and energy trying to change that.

So what can we do then? We can talk about it. I cannot stress enough how important it is that we talk about our periods openly. Half of the population experiences this, so why do we keep it so hush hush while men talk about their dicks like they are works of art that we all want to hear about? Not only does talking about your period openly remove society’s stigma surrounding it, it also keeps us informed. I had been so shy about my period for my entire life that I had never even known that what I was enduring was abnormal. Listen to your friends, listen to your body, and if your doctor isn’t taking your pain seriously get a new doctor. I will never stop kicking myself for being clammed up about something that could have been discovered years prior. If we aren’t talking, no one can be listening.

Top photo by 欠我兩千塊 via Flickr Creative Commons

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Annie Anzaldua is the 24-year-old founder of The F Word Gift Shop (@theFWordGiftShop) an Etsy shop that features handmade feminist apparel and products that support Planned Parenthood. She lives in Austin, Texas with her husband Antonio, their two cats Winston & Bighead, and their pitbull rescue Yolonda. When she is not smashing the patriarchy, Annie can be found hiking, paddle boarding or training for her next marathon. Fllow her at thefwordgiftshop.etsy.com and on Instagram @theFWordGiftShop.

 

 

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