Content warning: This article includes talk of chronic illness/pain, blood, medical procedures, infertility, mental illness, and other sensitive topics.
Content warning: I do my best to use gender-neutral language when referring to medical conditions and life experiences. However, medical terminology and resources are often incredibly trans-exclusive. Most linked articles in this post often use primarily cis-centric language. I apologize for this.
I’m sitting in a physician’s room, in an uncomfortable chair, staring at paintings of farmland on the off-white wall. My jeans press into my stomach and cramps start in protest. I nervously tap at my phone, texting friends that it’s now or never.
I’d filled out a screening packet weeks earlier and the physician agreed to see me, so to others this might seem low risk, but I’m tired. This is my last ditch attempt after years of being gaslit by medical professionals. I’m in pain. I’m desperate.
The physician enters, a middle-aged man with graying hair and kind eyes. A friend recommended him to me, which is the only reason I’m sitting in his office. I don’t usually trust men to listen to my pelvic woes.
He sits down, shakes my hand, asks me to tell him about my pain, about my period, about my sexual experiences, about my bowel movements, about my everything, no matter how trivial. After ten minutes of quiet listening, he nods, and officially diagnoses me with endometriosis.
It’s the first time a diagnosis makes me cry, because for the first time I know for sure: I’m not crazy.
A disease in which tissue similar to the endometrium in the uterus grows outside of the uterus. The invasive tissue creates scar tissue on surrounding organs and cause chronic inflammatory responses in the body. Symptoms include pelvic pain, ovarian cysts, severe cramps, heavy menstrual bleeding, fatigue, bowel irregularities, brain fog, painful sex or penetration, painful menstruation/ovulation, infertility, difficulty becoming and remaining pregnant, and many others. Endometriosis is sometimes called the “working woman’s disease”, a misogynistic moniker earned from alleviated symptoms during pregnancy in some afflicted people.
This condition supposedly affects 1 in 10 women during “reproductive years” (between ages of 15 and 49). That number represents primarily white, college-educated women with access to reproductive health care, and doesn’t represent people outside that category. The number is likely much higher.
The basics of this disease are easy to read and nod your head at. If you’ve never experienced these symptoms, you might assume medication can treat them all, and people can live fulfilling lives with such a complex disease.
The devil, as usual, is in the details.
Treatment is scarce and unreliable. Medication can effectively treat endometriosis in the short-term but has been deemed unsafe long-term. There is no existing cure. Even the pathology of the disease is unknown. Multiple theories exist, but each contradict each other. Given endometriosis can be found in people without uteruses, most physicians are flummoxed at how to move forward.
Assuming a person can even find a physician willing to listen to their pain, the physician may not be knowledgeable enough to diagnose it. Many physicians aren’t trained to diagnose endometriosis at all, and do not know it exists.
The worst case scenario is that a physician diagnoses your pain as “anxiety”, as “exaggerated”, says it’s normal, to “toughen up”, to go home and take some ibuprofen.
This is also the most common scenario. This is where I started.
My periods started when I was twelve. I remember being furious at the red streak in my underwear. Menstruating seemed like such an inconvenience. Following my clumsy christening of pads and tampons, I was irregular for about a year, until I settled into a monthly routine. Up until that point, menstruating had just been an inconvenience. I had to carry pads and tampons now? All the time? Uggggh whatEVER.
When I regulated, however, the cramps began. My mom told me about her cramps as a teen, how she’d curl up in her mother’s lap and sob and drink whiskey to dull the pain. Similarly, my cramps destroyed me. I remember missing days of school, regularly calling off the first day of my period because my cramps would keep me bedridden. I remember tampons being impossible to use because they hurt too much. I remember bleeding heavily, bleeding through pads and underwear, and bringing extra pants to school. I remember cold sweats and dizziness and headaches and back pain and god did EVERYONE deal with this?
During one of my yearly checkups, my nervous thirteen year old self stared at her shoes and quietly told my physician, “My periods really hurt.”
My pediatrician looked me up and down, sighed, and told me to lay down. He pawed around my stomach and told me to sit up again. “It’ll get better. It’s always rough in the beginning,” he said gruffly. I nodded, trusting him. He was a professional, after all.
Years passed. Through high school the cramps got worse. It became my new normal. I starting taking 600mg of ibuprofen in the morning as soon as I woke up on the first three days of menstruating — I’d be bedridden otherwise. I learned to predict my period from cramps starting days before. At some point I was diagnosed with borderline anemia, due to the inflammation and heavy bleeding. Eventually I started organizing my life around my period. I avoided social events and extracurriculars to hide my exhaustion.
By the time I graduated high school, I spent three out of four weeks in a month in pain. Cramps went on for about ten days, followed by two weeks of recovery until I felt “normal” for a week.
Despite what every physician told me, my menstruation never got better. I just got “better” at handling it. My baseline for pain got higher and higher until I’d savor my week of freedom and then steel myself emotionally for the next three weeks fraught with bleeding and exhaustion. I figured I was just unlucky. After all, medical professionals told me this was “normal”.
My next attempt to seek help for my pain was after I entered college. Every month, I had a stabbing pain in my side, near my ovaries. I would almost black out whenever it happened. It would take me half an hour to breathe normally again, following by nausea and exhaustion. Since my family history includes ovarian cysts, I figured maybe I was unlucky enough to have cysts too, on top of the horrific pain.
My university clinic was a welcome change from my small town pediatrician. Students worked the front desks, so I felt more connected to them as people. The physicians came from world-class training and education. The university was even a recognized research institute. I made an appointment with my primary care physician there.
Some things gave me hope about this round of finding treatment. My physician this time was a woman. I was in a much more progressive location. Medical knowledge in the area was advanced and cutting-edge. Surely this person could help me.
A nurse called me in and took vitals. She seemed sympathetic as she left. It’s a look I’m very familiar with. There’s a distinct form of trauma-bonding in people who menstruate, or who’ve menstruated in the past. I expected the same from my physician, a menstruating person.
She entered, and it became very clear she was going through the motions. She wouldn’t look at me, took her notes quickly, half-listened to my complaints, and when she finally looked at me, I knew her answer already. My heart sank as she told me, “Some women just have painful ovulation. It happens. Sorry.”
My baseline rose again. I was now in pain every day.
You may be reading this and thinking, “There’s no way no physician caught this!”
“You’ve been complaining about this for years, and no one did anything?”
“Well, you kept going, so was it really that bad?”
You have the same thoughts I had. At this point I had to assume this was my life, and would be my life until my period stopped. This poisonous cycle was a constant. I had to find a way to stop it.
I turned to birth control. The Mirena IUD touted things like “near perfect effectiveness” and “no periods”. My whole body was strung unbearably tight. I was nineteen now. I’d spent six years in near-constant agony and was reaching my breaking point. The Mirena seemed like a saving grace.
For those unfamiliar, IUDs (intrauterine devices) are small, T-shaped devices inserted into the uterus. Some are hormonal, some are not, but all affect the way sperm move so that they cannot enter eggs in the uterus. All are long-term and totally reversible.
The appointment was made. I went in prepared, with a trauma-informed physician and extremely empathetic clinic staff. My midwife made jokes about spelunking in vaginas and needing a headlamp for IUD insertions. It was a lovely experience, despite the gut-punch of a piece of plastic wiggling through my cervix.
Unbeknownst to me at the time, people with pelvic pain often suffer with IUDs. The presence of the IUD in the uterus can cause pain as well. For two years, despite my best intentions, my IUD intensified my inflammation. While I didn’t have a regular period, I still had cramps and occasional spotting. It was also in these two years that I discovered sex was a problem.
Be cautioned, dear reader. I’m about to talk about sexual topics.
As a pretty free-spirited queer millennial/Gen Z nerd who grew up on tumblr, sex was fun for me. It was something to experience with joy and curiosity, and to bond with others over or to care for yourself with (if sex is something you’re interested in at all.) All pain must be consensual, and chosen.
The harsh reality for me was that pain was involuntary and constant. Any kind of penetration intensified my cramps and tensed my vaginal canal so it wouldn’t relax. Repeated penetration would cause pelvic floor pain and spotting, and clitoral stimulation was enough to cause waves of cramps through my uterus, pelvis, and back. No amount of lube or foreplay helped. If I wanted to have sex, I had to accept awful, horrific, tearing pain too. My delight at highly effective birth control was tainted by my sobbing while my partner held me. Even if I didn’t end up a crying mess, I suffered for days after, unable to wear anything tight, unable to drive, unable to sit upright for extended periods of time, for fear of putting pressure on my abdomen.
There’s an awful resignation when you live with chronic pain and feel like all your options are depleted and things you love are being taken away from you with no control. There’s dissociation, there’s resentment, there’s grief, there’s anger, there’s fear, there’s so much fear, there’s so much fear for the future, because what else will be taken from me?
Remember: physicians told me this was normal.
“That isn’t normal.”
A friend walks with me down the hall at work, glancing sidelong at my hobbling. I press on my stomach and force my feet forward, and shrug at her. “I know, but what can I do?”
The next thirty minutes changed my life. She told me about endometriosis, something I’d been aware of in the back of my mind but never learned about. She told me about her history with it, her physicians, how she had her fibroids and cysts and scar tissue removed, how her pregnancies changed it, how she was better now. Still not perfect, but better. She recommended a physician, one she liked.
I’d given up on treatment. I was about nine years into gaslighting, dismissal, and mistreatment from medical professionals. I was about nine years into severe pain taking control of my life. I was about nine years into grieving the loss of a future I wanted.
Between bouts of brain fog, I reached out to this man. He was my last attempt, and I only tried because my friend told me to.
The first thing that was different about him was his method of screening patients. He sent me a packet in the mail before I ever enter his office. The logic: patients with pelvic pain often spend inordinate amounts of time and money to see professionals that might not even help. The packet helped him figure out if I fit his patient criteria, before he saw me, so I wouldn’t have to pay insurance and medical fees just for a rejection. His forethought strengthened me. This man understood at least part of my life already.
With the packet completed and sent, I waited for a reply. A week passed, and then another. I’m not religious or spiritual but I almost became a praying woman just to receive an affirmative call from his nurse coordinator. If they didn’t accept me into their clinic, I didn’t have any other options. I didn’t have a backup plan. My stomach twisted every day my phone went silent.
Finally, a call.
The doctor would like to see me. When was I available?
My final diagnoses, after an hour with my new favorite person, were endometriosis, adenomyosis, pelvic floor dysfunction, vaginismus, and vulvodynia. I’ll walk through the last four.
Adenomyosis: a condition in which the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. This causes severe pain and heavy bleeding, often with clots. It also often enlarges the uterus, which can cause referred pressure or tenderness on the abdomen. Adenomyosis also affects fertility.
Pelvic floor dysfunction: the inability to correctly relax and coordinate the muscles in your pelvic floor to urinate or to have a bowel movement. If you have a uterus, there may be additional pain during sex. This was the case for me. Due to constant pain, my pelvic floor never truly relaxed.
Vaginismus: an involuntary tensing of muscles around the vagina. This makes penetration painful.
Vulvodynia: chronic pain or discomfort around the opening of your vagina (vulva) for which there’s no identifiable cause and which lasts at least three months. Even gentle touch can cause discomfort or pain for those with this condition. Things that can also trigger discomfort or pain: sitting, wearing underwear, sex, menstruating, etc.
Besides the newfound understanding that my uterus was, in general, broken, I found myself empowered by the diagnoses. Finally! A professional trained to recognize medical problems recognized my medical problems! It was like winning the lottery.
Then we had to discuss treatment. Pelvic floor dysfunction, vaginismus, and vulvodynia require different forms of relaxants and physical therapy, but have no specific treatments. I’ve heard folks use anything from kegels to cannabis lube.
Treatment for endometriosis includes a variety of techniques. Hormonal therapy can prevent further endometrium-like tissue growth, but doesn’t necessarily reduce existing pain from scarring. Birth control can reduce pain, potentially, but not for everyone. Clearly not for me. Pain killers were an option, but I’d already surpassed acceptable usage of NSAIDs. The only remaining option for me was surgery: conservative (endometriosis tissue and scar tissue is removed) or radical (hysterectomy, also removing ovaries).
Treatment for adenomyosis is similar. Anti-inflammatories and hormonal therapy are the first course. Once again, surgery was my only option. Unlike endometriosis, adenomyosis has one surgical procedure: hysterectomy.
I took time to think about what a hysterectomy would mean. I’d be infertile. I would have no children. I’m polyamorous, so partners wanting children didn’t affect me directly, but did I want kids? Was I sure?
My gender also factored in. I’ve called myself a woman in this post, but it’s more accurate to call myself nonbinary. I dance between identities and call myself whatever I like, and find joy in the middle ground of gender. Was I happy as a nonbinary person having a uterus? Was a hysterectomy actually a blessing in that sense?
I took a year to mull over my feelings. When I re-established care with my physician in his new office, he asked me what I wanted to do.
I told him to schedule me for a hysterectomy as soon as possible.
Three months later, my physician performed a total laparoscopic hysterectomy, including my cervix and Fallopian tubes, with ovary preservation to prevent an induced menopause. While ovary preservation has a risk of recurring endometriosis, that risk is incredibly low, and we prioritized preventing early menopause for my mental health. (To his credit, he also offered to remove my ovaries and replace them with hormone therapy, if they caused dysphoria.)
I was put under on August 13th, 2020. I woke up hours later, with one less organ and a lot of pain, but would you believe me if I said that my cramps before the surgery were worse?
My final decision to remove my uterus came down to quality of life. I was tired of resenting my uterus. I’d spent ten years hating a part of myself. I cultivated my relationship with my body around kindness and self-care, and I still despised this poisonous sack of blood and muscle controlling my life. Pain exacerbated my mental illnesses, disrupted my social life, and inhibited my career. I didn’t want to live like that anymore. That was the driving force of my decision.
Secondary factors were gender, in that I was pretty nonplussed about it existing in relation to my body; and my complete lack of desire to have biological offspring. I’d never been maternal, and would much rather invest in community and myself than invest in my own childrearing. There’s nothing wrong with having biological children. For me personally, it’s repulsive. (And, as I’ve told others, adoption and fostering are entirely viable options if I change my mind in the future.)
Upon waking up, my body felt more like my own. Once I’d recovered and healed from surgery, a new world opened up for me. I walked around my block, stood for long periods of time, and ate foods that previously spiraled me into digestive hell. With so much energy released from pain management, I better focused on my mental health. Within weeks my anxiety, depression, OCD, and (C)PTSD reduced dramatically. I engaged with friends and my partner in more mentally-present ways, like game nights and phone calls. I joined my community as an active member, no longer a passive observer. Even my mental health providers noted my improved general health. I felt, and a year later continue to feel, like I control my life.
I can’t find any negatives in my experience. My hysterectomy was an extremely positive experience that’s only benefited me. I live a charmed life with wonderful friends and a wonderful partner and I chase after whatever I want.
At the same time, in the midst of all my joy, I know infertility and hysterectomies are harrowing, traumatic operations for a lot of people, and their experiences are just as important to hear. Most stories of hysterectomies are heart-wrenching battles with fertility and pain (and very frequently cancer.) Prior to my own hysterectomy, I rarely heard people having only positive results. I didn’t hear anyone my age making this choice voluntarily.
It isn’t to say that people in their twenties don’t want hysterectomies. When I told my peers about my surgery, the primary response I got was shock, not because I did it, but because I found a professional willing to perform it. I’m a childless, upper-middle class white woman. Medical professionals in the US tend to prioritize fertility in my demographic, even at the expense of our autonomy. I’d be remiss if I didn’t point out the glaring hypocrisy here: doctors in the US also have a historical bias towards coerced sterilization of people of color and imprisoned people. The fact that my surgeon moved forward with my decision is a miracle in and of itself.
It shouldn’t be though. The right of bodily autonomy shouldn’t be tied to my perceived worth in fertility. The right of bodily autonomy includes my decision to destroy my own fertility. It includes my decision made for my health and happiness. Finding a professional competent enough to respect that shouldn’t be a trial people face.
For those struggling with incompetent physicians, I feel your suffering like my own. For those struggling with pain, I stand by you in your battle to find care. For those struggling from emotional wounds inflicted on you from people supposed to heal, I hope you find your peace.
“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” — Audre Lorde
About the Author
Jess Schalz (she/they) is a software engineer, nonprofit organizer, and oddity collector. She has a terrible cat named Sudo, and the two of them live in Minneapolis, MN. She’s never successfully grown a garden, but tries every year nonetheless.