Preface:

I took this photo of myself the morning after the 2016 election and sent it to a group of friends with the caption, “I don’t know where to exist in my body today.” I still don’t exactly know what I meant. I was just…uncomfortable, dismissed. There was no refuge, no safe space to turn inside my own physicality.

When I look back at this photo now, what stands out to me is how wacky my outfit was. I’m not usually a fashion icon or anything, or even particularly concerned with matching, but I do have a style, and this is not it. It wasn’t until recently that I recognized that each of the items I was wearing had been a gift from another woman in my life. It was as if I knew I needed to be draped in their existence to make it through that day.

As we moved through the “presidency,” my physical health started to get complicated. Symptoms moved from body part to body part. Some days I had a migraine, other days a stomach ache or knee pain. Often, I had pelvic pain.

My pain, like me, did not know where to exist, how to be seen, how to be safe. In the evenings, I would lie on the couch wailing to my husband in jest, “Kyle! I’ve got it bad! I’ve got a real bad case of the patriarchy!”

Turns out, I was kind of…right.

This is the story of how small moments of dismissal have come together to create a body in disharmony and a pain that does not know where to exist.

Diagnosis: Patriarchy

Age 14, Pain

My first experience with cramps was the summer after my freshman year of high school. I was staying in Florida with a friend to work on a community service project. One afternoon, we were resting, watching TV. I started to feel a new, nauseating pain making itself at home throughout my midsection. Lying on the living room floor, I pushed my whole frontside into the carpet, trying to find any angle of pressure that could provide some relief while the horror of this new reality settled in. Is it going to be like this every time I get my period? Do I need to throw up? How many years until menopause?

The dread of having to perform any normal life task while sustaining that pain took over the next decade of my life. I would recklessly pray for things like cancer or a teen pregnancy to disrupt the painful pattern. Just nine months of relief seemed pretty worth it.

I knew my pain was strong, but I didn’t think it was abnormal. The image of women clutching hot water bottles, eating chocolate and crying on their sofa at “that time of the month” is a treasured cultural phenomenon. I thought I was just joining the club. When the pain started to feel unbearable, I would think, “Everyone else can handle this. You are weak.”

It took at least two years of my dad cocking his head to the side with concern each time he saw me writhing and saying, “Jojo, I don’t think that’s right. You should ask your doctor about that,” before I ever mentioned it to a medical professional.

Age 16, Pediatrician

“I wanted to ask about cramps. Mine are really, really bad, so I was told to ask about endometriosis. I know some people in my family have had it.”

“It’s probably not endometriosis, because that’s very painful. Your options for management of cramps would typically be a hormonal birth control or ibuprofen. Do you take ibuprofen?”

“Yes.”

“How much are you taking?”

“One or two every couple of hours.”

“Oh, well you can take much more than that. And if that doesn’t work, I can write you a prescription for the 800mg tablets.”

Age 17, Pediatrician

Repeat conversation above, increase suggested ibuprofen dosage.

Age 18, Pediatrician

Repeat conversation above, increase suggested ibuprofen dosage.

Age 19, Gynecologist

It’s my first Pap Smear. My doctor is a young, mesmerizing blonde woman. Not many people have seen my vagina, and I spend most of the time weighing whether I’m glad she’s beautiful because it makes me like her or if it’s scaring me because she probably has a more beautiful vagina. I tell her about my pain and, willing to do pretty much whatever she says, I am convinced to try a birth control pill called Aviane.

Early morning a few weeks later, I find myself walking through the snow on my way to math class. My entire pelvis seizes. The sudden onset of pain knocks the wind out of my lungs and buckles my knees. I collapse on the sidewalk, choking on cold air, and try to redirect oxygen to my uterus.

“It takes 3 months to get your body adjusted to a new birth control pill,” she said.

“Expect some pain,” she said.

“If you can’t handle it, you are weak,” I hear.

Age 21, Gynecologist

A nurse sets me up in a room with a paper gown and the infamous stirrups. She is chatty and kind, I am sweating and nervous. She leaves and the doctor comes in. He is a white-haired man who somewhat resembles one of my uncles, already setting me up for a psychologically confusing experience. He does not greet me. He goes over to his table and prepares the evil duck lips, then comes over to me, still no greeting. In lieu of an explanation of what he is about to do, he looks at my face unenthusiastically, demanding my silent consent, and begins. I tense with discomfort and involuntary rejection of the frigidity. He shakes his head with impatience, “I’m almost there,” he says…

When he finishes, he starts to remove his gloves and wash his hands. Before exiting the room he says, “Go down to the lab. I’ve ordered you a pregnancy test.”

Saliva starts to gather in my throat, choking me. My breath gets panicked and short. A raw sense of violation, abandonment and pregnancy (?!) come together in a perfect storm of uniquely female fear.

Did he suspect I was pregnant? Was it possible I was pregnant? Did he even know anything about my sexual history to warrant that suspicion? Was my Pap Smear weird? Why didn’t he say any fucking words? When do I see these results? What does a Pap Smear even test for? Do I get dressed now? Is someone coming back here for me? Am I too old to bring my mom with me to the doctor? I bet he would have said some fucking words if my mom were here…

I get myself dressed and go down to the lab. When I approach the desk, a nurse with a classically large, maternal bosom is sitting there for take-in. I look pretty upset, so she asks, “What’s the matter, hon?”

I whimper to her, “I was told to take a pregnancy test. But, I don’t know why.”

“Ohh, no honey that’s just routine. Everyone takes that with their annual exam here.”

UM, WHAT?!

Age 24, Gynecologist

On recommendation from a friend, I go to see a new doctor. In my first meeting with him, we have about 30 minutes. He talks a mile a minute, ferociously drawing diagrams on a legal pad to express the ideas he can’t squeeze into his speech.

“All women will have either anxiety or depression by age 40. You will have anxiety.”

“How do you know that?”

“Because, I mean, look at you. No one who keeps their body like this doesn’t have a little bit of neurosis.”

“Oh.”

To his credit, he says things that, if they were not buried in a barrage of threats, could be very useful to me. He is the first to suggest meditation as a pelvic pain solution (I think that’s why he was getting hyped about anxiety?), and shows me some apps to use. He suggests that investigating the personality traits that drive me to (some would say excessive) exercise could help identify suppressed emotional and physical pain. But he doesn’t have the patience to lay out a path for me. He is in too high demand and has too many patients. It is not until years later that I understand the scribbling on the legal pad.

So, we decide I’ll get the progestin-based IUD called Mirena for treatment of cramps.

Age 24, Mirena placement

There is a student doctor in the room who seems about my age. She is nervous and makes small, unnecessary comments to practice her patient rapport. I am not up for it and half-heartedly grunt at her attempts to engage.

Insertion is painful, and there is a lot of cringing and probably a little bit of squealing. The student comes to hold my hand as if I am giving birth while the doctor continues to manipulate a long set of tongs that I can feel tingling all the way through my belly button. I start to whimper. They seem surprised at my level of pain. “Wow! It doesn’t usually hurt people this much,” says the student doctor.

“You are weak,” I hear.

Age 27, Mirena check with symptoms

I start to have pelvic pain at times other than my period. Sometimes just a throbbing here or there anywhere in the abdominal area, sometimes unexplained bleeding. Pain from sex, pain from being too full from dinner, pain from lying on the couch wrong… If it’s not one organ, it’s another. There are basically no good days.

I go in to the doctor to see if the Mirena is in the right spot. They order an ultrasound, so I won’t know for a few days. While I’m there the doctor does a manual check. There is another student in the room. The doctor feels around, aggressively applying pressure and asking when it hurts. It always hurts. “Uh huh,” she mumbles. She stops feeling around, and starts to do a visual check. She nods to the student to come look deep into my body with her. They have a flashlight and are mumbling medical terms that are unfamiliar and not particularly audible to me. I see the student doctor start to prepare a very long stick with some goop on it, which eventually I see going inside me. I feel a strong burning sensation followed by extreme cold. They have been focusing pretty hard, and seem to have forgotten that I, the person belonging to the vagina they are deep into, am there. I call them back with a yelp of discomfort.

They emerge, still confused by my presence. Collecting herself, the doctor begins to explain, sloppily, “I cauterized a small spot on your cervix. This could have been the reason for the bleeding. But it also could be the endometriosis we talked about earlier or more likely an STD of some kind. It is also potentially something we want to keep an eye on as a cancer warning sign, so we are going to go ahead and do some tests.”

Well. I’ve only had one partner for several years, and I’ve had multiple tests throughout that period. So, sitting on a table with an aching cervix that I don’t entirely understand, legs splayed open to two strangers, and a potentially lost IUD, I think that I’ve just learned that the most “likely” explanation of my symptoms is either that someone’s STD has invaded my monogamous relationship, I have a highly debilitating condition called Endometriosis…or…did she say cancer? Cool.

Utterly incapable of considering the first option, and pretending I didn’t hear the “C” word, I try to find a path forward.

“So… endometriosis? How do I find out about that?”

“Well, it’s a quick laparoscopic surgery. Sometimes it’s easier to just treat it than to confirm that you have it.”

She turns to her student doctor to explain, “Endometriosis could lead to a great deal of trouble with infertility.”

With a rush of literal hysteria (hystera = uterus, birthplace of emotion), I burst into tears. I couldn’t stop. It was a floodgate. The look of utter confusion on their faces communicated to me one thing, the same thing I’d been hearing from doctors since age sixteen: “You are weak.”

Age 29, Trying a new Primary Care Physician

“I’ve had a lot of pain with my period for my whole life. I actually stopped eating dairy and gluten and the cramps pretty much went away but now I have all these other weird symptoms. I have no energy. I sleep all the time. My liver area is always aching. I feel “depleted” before I even work out. I feel kinda sad and I’ve never struggled with that before. I keep eating more but losing weight. I get a migraine at least once a week. My self-care routine is off-the-charts-labor-intensive but it doesn’t seem to work. Ovulation is super painful (like I can’t stand up). I’m feeling like I want to do the laparoscopic endometriosis investigation surgery.”

“Have you ever tried talk therapy?”

…………………………………………………………………………

I’m 31 now. I have endometriosis.

Endometriosis is a chronic condition in which a substance similar to uterine lining (endometrial tissue) grows outside of the uterus. It can grow into obstructive formations anywhere it wants to, similar to cancer, which is what causes pain and impedes organ function.

I have asked about it in doctors offices for 15 years. I have had endoscopies, ultrasounds, allergy testing, blood tests. Endometriosis was not (and cannot be) found through any of those tests.

Here is what was found:

• severe scarring from abuse of ibuprofen

• extreme nutritional deficiency due to untreated endometriosis sister conditions such as SIBO (Small Intestine Bacterial Overgrowth- this is when you have too much bacteria in your body and it eats your nutrients instead of you. Jerks.)

• “chronic fatigue”

• hormone imbalance/poor estrogen processing (made infinitely worse by attempting estrogen-based birth control options like Aviane)

• avoidable food sensitivity to major staples

• leaky gut

• anemia

• thyroid imbalance

• compromised function of the liver and pancreas

• cysts galore, particularly a variety that bleeds into your pelvic cavity at ovulation (COOL! Not.)

• complex migraines

Women wait years (for me, 12) for their endometriosis symptoms to travel out of the female parts of their bodies in order to be acknowledged. Those years without treatment (or with counter-productive treatments) wreak havoc and leave us with bodies in disharmony.

With a pain that does not know where to exist.