**Content warning: a little too much information ahead**
While walking through the Garden of the Gods in 2017, I was overcome with a sharp stabbing pain in the upper right quadrant of my abdomen. I immediately thought my gallbladder was infected and I might need to end our vacation early. I went back to our hotel room, took some pain meds, shed some tears, and went to bed.
I finished the trip as if everything was normal, still in pain but reluctant to stop snowboarding. When I returned to Minnesota, I called urgent care and they insisted I come in. While in triage, they itemized all the things that could be wrong. I was faced with a decision. The next day I was supposed to get on a bus to attend the Women’s March on Washington. If anything they listed was the root of the pain, I wouldn’t be able to go.
I left urgent care against medical advice.
I wasn’t going to let this pain stop me from being part of something huge.
So I loaded the bus the next morning, it would be a 26-hour trip, we’d march all day, and then a 26-hour trip back. I could do it. I remember the pain getting worse and worse and then the worse possible thing happened. I started bleeding. A lot. I had one emergency tampon and pad in my backpack, my period wasn’t due for weeks. And though I was on a bus full of women traveling to march for women's rights— neither did anyone else. We stopped at the Ohio rest stop to find out it doesn’t sell feminine products.
So I bled. Uncontrolled. And a ton. Like more than I ever had in my whole life. I was mortified. The most embarrassing thing ever, but also, was it possible to bleed out this way?
When I got to Washington DC, the first stop was CVS for everything I needed. Then a painful day of protesting “45”, chanting with the crowd, and being inspired. Totally worth it.
When I returned home, I finally went to the doctor. I had blood tests and all my organs were checked on ultrasound.
I was “normal.”
The doctor called for an intrauterine ultrasound. It revealed multiple cysts on my right ovary which was also surrounded by freestanding fluid.
That wasn’t normal. No. But. They sent me on my way with the instructions to take ibuprofen.
Eventually, the pain subsided, and things were back to “normal.” However my “normal” was a monthly cycle that was irregular, heavy, and very painful. I’ve been told since I was a teenager that this is normal for some women.
Approaching the start of grad school I knew normal wouldn’t be okay. I knew I wouldn’t be able to work as hard as I needed to, to show up and be my best self every single day for two years if for a week or two each month I felt like I couldn’t get out of bed because I was in so much pain. It was going to hinder my success. I needed help.
I visited my mother's doctor, and she listened to my story. She told me, yes it’s pretty normal for some women to have painful, heavy, and irregular periods. She told me birth control can help. Up until that day I never considered birth control. For a lot of reasons, but the biggest was I was told it wasn’t safe for me because of the breast cancer in my family. So we chose a non-hormonal IUD. I remember the doctor saying, “there’s a chance you could have endometriosis or polycystic ovarian syndrome. If birth control helps, it isn’t endometriosis. But you also don’t fit all the criteria for PCOS.”
After a traumatic insertion story that I could tell another time, I left for grad school with a brand new IUD and hope.
IUDs don’t help right away. There’s a period of time that they need to be in your body for them to work. I was in my first semester of grad school, and the pain was all I thought about. That and the word “normal.” I did what I always do. I poured this energy into my art.
What you see with this post is the art that stemmed from the first semester. I explored fiber art for the very first time. Painting didn’t fit. I didn’t want to show the pain I felt through symbols and metaphorical images. I wanted to investigate the pain by inflicting it.
So I tore, stabbed, bound, melted, and burned. Melting is really what stuck. It felt SO right. With my heat gun, I bore through layers of synthetic fabrics that then hardened like plastic scars. In my first official series of this melted work, Neuroses, I melted and mended. In many ways, I felt like the process healed me as the IUD started to do its work. I had a way to make myself feel better even if there was no way to truly “fix” the damage that had been done.
The pain has laid mostly dormant for three years now. It comes and goes very mildly, never of much concern considering what my normal is. I have had some hormonal panel blood work done in the meantime, trying to get to the bottom of the cause of it all. Though the pain is mostly gone these days, I have more inflammation than I ever have in my life; I’m gaining weight though I’m just as active as I have always been, and I eat fairly well; I have the worst acne I’ve ever had; no matter how much I sleep I feel like I am never not tired; I have anxiety and depression that are getting harder and harder to manage; and regulating my blood sugar feels impossible.
I have tried to get answers to all of this. But I’m “normal” on all accounts.
Two months ago, that sharp, stabbing upper-right quadrant pain came back. I tried to ignore it, but my husband insisted “it’s time, they said if it comes back you need to get an ultrasound again to see what is causing it while it’s happening”
So I scheduled a gynecology appointment. But of course, everything is scheduled 1-3 months out.
In the time that I had to wait to finally be seen, I had to go to urgent care for a random case of mastitis. Don’t ask me how a woman who has never been pregnant got it. I don’t know. But I asked the doctor in urgent care if it could be linked to PCOS, because I had an appointment in a month to test if I had it. He asked me to lower my mask. He took one look at me and said, “first, I wouldn’t think the two could be linked, and second, I wouldn’t consider you a candidate to even be tested for PCOS. You don’t have any of the outward physical characteristics.” Thanks for your helpful feedback, Sherlock.
By the time my appointment rolled around yesterday, I had no pain to speak of. Instead, I brought a notebook with a full page of evidence leading me to believe that I have PCOS. I needed the tests to be run. And I wasn’t leaving without them.
This morning I wait to hear back about my results. And honestly. Whether it's negative or positive is an entirely different story. I’ll take either answer. Finding out I’m still “normal” will leave me very confused. But either way, someone FINALLY listened to me and took the time to investigate.