Out Of Order

*Originally published in Stephens Life Magazine, Fall 2017, see on issuu here.

My arm isn’t in a cast. I have no visible scarring on my body. I don’t have any monitors attached to me and, to most, I look like your average, healthy 23-year-old woman. But this is not the case. I live in a dull constant pain; I have a silent disorder and I quietly go about my days masking my pains.

Waking up at 3 a.m. in a bath of sweat. Snapping at mild inconveniences. Discovering dark bleeding along the lining of underwear at unpredictable moments. This is menopause, and I know this because, at age 22, I lived it.

I have endometriosis. When thinking of menopause, usually the image that comes to mind is one of a middle-aged woman fanning herself with any paper object in her reach. But for me and many young women with endometriosis, medically induced menopause is a whole different reality.

Endometriosis, in short, is a chronic disorder in which the tissue lining of the uterus, called the endometrium, incorrectly begins to grow outside of the uterus and onto the surrounding organs. This displaced tissue can grow along the outside of the uterus, onto the ovaries, bladder, intestines and even up onto the lungs. This tissue attempts to shed itself each monthly cycle, as it normally would do when growing inside the uterus. But since it is no longer in the uterus, it bleeds out internally and has nowhere to go, causing painful bloating and cramps.

Let’s back up some and get personal. On April 2015 outside of Hugh Stephens College Library I called my mother. I was in an unusual pain that I had never felt before and calling your mother is just something you do when you’re facing discomfort. I stood outside the building pacing as I described the sharp pain I had been feeling in my lower right abdomen for some days now. What was it? Why hasn’t it gone away yet?

My mother talked me into going to the campus doctor and I hesitantly agreed. I sat on the crunchy paper covering of the examination table of the doctor’s office and described my symptoms. Something I didn’t know I’d have to continue to do for the next few years. In various doctor’s appointments and visits to urgent care centers I went through suggestions of appendicitis, pregnancy, or just plain “bad cramps” as potential diagnoses for the debilitating pain I was feeling.

Months pass and the cocktail of medications found in the pain reliever aisle did not relieve my discomfort. One sunny afternoon I lay underneath a mound of blankets and pillows and had skipped my classes of the day due to an inability to emerge. From my mound of blankets came my urgent care visit that lead me to an ultrasound appointment.

The doctor at the urgent care center believed I just had some ovarian cysts and needed an ultrasound to confirm and move forward from there. A heavy painkiller prescription and a reference to a more specialized doctor left me hopeful after this appointment. I would have loved to have received an official diagnosis or a cure, but this seemed to be a step in the right direction.

The experience of going to an ultrasound appointment when not pregnant is not fun. The ultrasound center’s waiting room was sprinkled with happy couples; husbands awaiting their turn to take a glimpse at the tiny precious life growing within their wife, hands being held, impatient foot tapping. And then there was me. A 21-year-old college student on her own. We all have that movie image of an ultrasound appointment where the couple goes together and excited. But when you’re not a happy couple and you’re not expecting a little bundle of joy, this experience is very different. A thick metal probe slathered in cold goopy gel was inserted inside my vagina and I watched as the ultrasound technician made difficult to interpret facial expressions. She clicked buttons and circled gray blobs on the screen that looked like all the other gray blobs on the screen except that these ones get circled. And then after all of this I was sent on my way home without answers. The technician pointed me to a box of tissues to clean myself up with and left the room. It was like a Tinder date, but with more expensive lab fees.

After many more months and a few different prescriptions that did not improve or worsen my symptoms, I was back at the gynecologist. With the news that my pain had not improved, my gynocologist again reviewed my symptoms. I had heard about endometriosis before, because I of course Google-searched my symptoms, as a way to try and supply answers that doctors weren’t giving me quick enough. I didn’t have all those symptoms that WebMD talked about, though. And I surely wouldn’t have such a serious, intense chronic illness.

Endometriosis is not uncommon. One in ten American women live with this condition according to the Endometriosis Foundation of America. Even with this statistic, the condition is highly underdiagnosed and undertreated according to Medicine Today, because it is a “silent disease.” This means that symptoms of it often mask themselves as side effects of other conditions and women go through multiple incorrect diagnoses before landing on the proper one.

Everyone’s endometriosis is different. Some women go about their daily lives not knowing they have the condition at all. Others, have their whole world engulfed by this diagnosis, affecting their work, personal relationships and overall emotional state.

Endometriosis has no known cause, but one easy way to track and diagnose it is through family history. When describing my internet finding and symptoms to my parents, I learned that my father’s sister had struggled with endometriosis when she was around my age. When I mentioned a family member of mine having the condition to my gynecologist, the pieces all started to come together. The combination of my birth control prescription not providing satisfactory results and the link to a family history lead my doctor to suggest endometriosis as a likely diagnosis.

Unlike many other diseases, endometriosis cannot be detected through physical inspection, ultrasound, MRI or anything of the sort, but rather can only be diagnosed officially through an operative procedure called a laparoscopy. With the tentative diagnosis hypothesized, my gynecologist scheduled me for this procedure and things were (again) finally starting to move along for me. My pain was being recognized and help was on the way.

In July, 2016, I checked into the hospital for my procedure, which technically was called a “diagnostic laparoscopy with potential for operative laparoscopy.” In layman’s terms, this meant the surgeon would scope out to see if I had any endometriosis growths and if I did, they would operate and remove them.

Before I went under, the staff told me that the surgery would last about an hour, but longer if they found growths to remove. As soon as I groggily became conscious from the anesthetic wearing off, I asked the nurse what time it was. She told me to not worry about it and to just relax as they hooked and unhooked all the right cords off of me. When my vision cleared and I found a clock on the wall, it had been two hours. Translation: I now had an official diagnosis of endometriosis, something I had been living with for over two years at that point. I finally had a diagnosis and frankly, I was relieved by this news and confirmation that my pain was real.

This is the lengthy process that it takes to even diagnose endometriosis. You get passed along from doctor to doctor and you do tests and tests and jump from medication to medication and the pain never really gets better. You’ll try different birth controls and you’ll even be put on one that sets you into medically induced, temporary menopause.

Sometimes my pain empowers me and pushes me to try harder than I might normally would have. Sometimes endometriosis cripples me and walking across campus wears me out. Pain medicine just numbs and makes me sleepy. But being in pain isn’t much better. This is endometriosis. It is a series of highs and lows. The pains come and go, and are impossible to track. Sometimes I think I’m all better and that this condition really isn’t that bad and I don’t know why I complain so much. Then the next week the pain comes and I remember what it is like.

Endometriosis affects women in different tangible, identifiable ways. Take a look at my college transcript. Some semesters I pushed through and finished with a 4.0 GPA. Another semester I withdrew from courses and one semester I even dropped out and moved back home. Endometriosis obviously has its physical restrictions, but medically, the emotional tolls are arguably as exhausting.

Many women suffer in silence. There is a stigma on complaining about “female problems.” We women are taught that uterine pain is just something we have to go through, but it’s not. Pain and discomfort is not normal nor should it be treated as such. The condition of endometriosis is complicated and hard to explain. Sometimes when I am in pain I get frustrated and wonder why this is happening. Sure, many other illnesses are much worse, but at least they have treatment plans and an end in sight. But as of now, there is no cure for endometriosis, only minimal truly helpful treatments.

With endometriosis you’ll search Amazon for the highest reviewed heating pads on the market, you’ll be made to take pregnancy tests you don’t need, you’ll avoid tight fitting dresses as you mask your “endo belly,” you’ll overshare and make people uncomfortable with your complaints about the masses growing in your abdomen, you’ll become a walking pharmacy of the best painkillers the pharmaceutical market has to offer. And you’ll be strong as hell.