“Pain. Today I learned what that word really means...”

My first period is documented in my childhood journal when on July 3, 1998 I became a woman. I was just a month shy of turning fourteen and about to embark on my freshman year of high school. I had locked myself in my grandmother's spare bathroom for the last hour, feeling scared and embarrassed. Definitely not ready for this next chapter of my life.

When my grandmother finally coerced me to open the bathroom door she handed me a sanitary pad but I wanted a tampon. I knew that many of the girls in my class, who had already had their periods, wore them. They were cool and modern. Unfortunately, my mom and grandmother didn’t share the same sentiment. According to them, tampons would give me “toxic-shock syndrome and I would die.”

“This girl thing is horrible.” My journal continues, “You smell, hurt, and feel like you don't want all this attention. I hate looking into the toilet and seeing all this blood. Shouldn’t I be dead? I want to die...”

Little did I know then that the phrase, “I want to die...” would be connected to my period for the next twenty-three years of my life. Without fail, it was the one thing I said every month when I found myself wrapped around the toilet puking from the amount of pain I was in, or rolling around like a worm searching for the best position to relieve the horrific cramps.

When I began wearing tampons at eighteen, in the midst of my rebellious nature - my, “I’m a grown up dammit” way, I remember struggling to first put it in. I was a virgin and quite frankly, wasn’t well versed in my downstairs equipment. Blame that on my second degree catholic upbringing where shame and sexuality are one in the same. I quickly learned that wearing tampons brought along a new challenge when I began to notice that during most months, I was not only bleeding through my tampon but through thick pads, every hour.

For years, I complained to my doctors. Each time I spoke of what I was feeling and experiencing; heavy bleeding and intense pain, was met with skepticism. It was suggested that what I was experiencing was normal, or that I had a low pain tolerance, or was just having a bad period. Anytime I said I wanted more answers - when something just didn’t feel right, I was told that tests were not necessary. So, I didn’t push it. I piled these experiences in a metaphorical folder titled, ‘I guess I’m a hypochondriac.’

Each month felt like a struggle. There were times that I had to miss work, class, or rehearsal because of the extreme pain and nausea I was experiencing. And no matter how much ibuprofen I took, or how many long hot baths, or how much I used my heating pad, nothing helped.

Many times, I ended up in the ER. Like the time I began taking birth control when I was told it would help my periods but instead, I ended up with hives across my chest and manic/ suicidal depression. I had no idea you could be allergic to birth control.

There was the time I went to the ER because I was in so much pain that I couldn’t stop throwing up. I laid on the bathroom floor for hours, begging God to just “Take me now.” Looking back, I’m sure it seemed that I was being dramatic but honestly, a part of me really felt like I was dying.

My most memorable ER experience came when I twenty-one and almost passed out at an Urban Outfitters in midtown Manhattan. I was early for a first date with a kind man who wanted to take me to a Broadway show because he knew I liked the theatre. While riding the subway into the city, my period started early. I didn’t think much about it and thought window-shopping would be a great way for me to kill a few hours before we were to meet up.

I was perusing a table near the front door of the store when the world around me began to look hazy. I suddenly felt nauseous and a wave of lightheadedness swept in. A security guard must have noticed the paleness in my face when I stopped to hunch over a table of books. He walked up to me concerningly.

“Ma’m are you okay?” he asked.
“I’m really not feeling well. Do you know where the bathroom is?” I asked.

I could tell that he felt conflicted with my question. He mentioned that there wasn’t a public restroom available but he would let me have access to his staff's bathroom. In hindsight, I probably shouldn’t have been so trusting of a man who led me outside the store and around the corner, but I am eternally grateful to that man for giving me a safe place at a horrible time.

For what seemed like forever, I laid on the floor of the bathroom in the worst pain of life. I was grateful, again, when the security guard hailed a cab to take me to the nearest ER. It was then that I texted my date to not only tell him what was going on, but that I needed to reschedule. I could tell he was disappointed but seemed understanding. He asked what hospital I was going to and then tried to comfort me by telling me that it was one of the “good ones.”

I wasn’t expecting any visitors at the hospital, so you can imagine my surprise when my date walked into my hospital room (with a bouquet of flowers) while the doctor began to ask me a bevy of personal questions; “How many sexual partners have you had? Could you be pregnant? Could you have an STD?”

I was mortified.

After an hour of trying my best to entertain my hospital guest, the doctor said he was going to release me from the ER. I was just - once again, experiencing a bad period. The doctor then mentioned - to my date, that we would make the Broadway show. My date was thrilled with this news and I didn’t have the heart to let him down after his bold public display of courtship. And the doctor, obviously, didn’t believe that my situation warranted further testing or - hell, rest, so I went. If you’re wondering, we never went out again.

It seemed like anytime I brought up my problem, I would hear the same thing; just a bad period. Each new doctor or gynecologist would immediately dismiss my pain. Even after I experienced two miscarriages in my late-twenties that ignited fear and question. It was then that I began to wonder if something was wrong with me. Could I have children? Was I infertile? I was told that no testing would be needed until I had a third miscarriage but would that be too late?

After a while, I stopped asking for help or answers. I knew - chances were, that I would end up feeling crazy or humiliated. If I did decide to ask, it only came after a moment of vetting my doctor; do they seem interested or helpful? Are they in a rush to visit the next patient?

For the next ten years, everything was normal. Normal in the way that my period dictated my life every twenty-one days. I found a way to work through my pain and the heavy bleeding, and even the fearful voice inside that often said, “I don’t know why, but I have a feeling I can’t have children.” It was a terrifying notion so anytime I had the thought, I shew’d it away. I told myself, time and time again, that if there was something wrong with me, someone would have found it by now. Right?

In the Summer of 2020, on the third day of my period, I thought I was going to pass out at the grocery store. A wave of extreme cramps, nausea, and pain began radiating through my pelvic area. My sister was concerned and after an hour of convincing, I finally let her take me to the ER.

When we arrived at the hospital, a Nurse Practitioner came into the room and was immediately dismissive of my symptoms. It didn’t matter what I said. The way she saw it, I was experiencing just an “abnormally painful period.” This was all before even examining me. I lost it.

“This is NOT a painful period! I have painful periods and this is different. I want an ultrasound RIGHT now.” I demanded.

She ordered the ultrasound but I could tell she was not happy about it but I didn't care. I wanted answers.

Fifteen minutes later, an ultrasound tech pushed her cart next to my hospital bed. For a moment, I felt panic. What if I just demanded this and nothing showed? Would that make a liar? A woman with a low pain tolerance, as others have suggested? Would I be even more humiliated after the ultrasound? (Shame is funny that way, isn’t it? It makes you question your truth based on the opinion of others, and not at all based on how YOU feel.)

All my fears vanished when I realized the ultrasound tech found something. She spent over forty minutes taking photos from different angles, near the center of my lower abdomen. I couldn’t see the screen, but my sister - who was holding my hand, was watching and I could tell by her face that she was looking at something very specific. I wanted to shout, “Finally! Something!”

The ultrasound tech quietly left the room and the nurse practitioner came back about ten minutes later. She told me that they found a cyst at the top of my uterus and they were going to refer me to a specialist and release me home. Before she left the room, I made a point to say, “I knew something wasn’t right...” and stared at her smugly. For a moment, I felt redeemed.

When I first met the specialist, a doctor I had never met, I realized what I had been missing my entire life. This doctor was amazing! Unlike other doctors, he pulled a chair directly across from me, making sure we were sitting at eye level. He looked at me intently, listening to my thoughts and fears, and answered all my questions and concerns. I experienced true dignity and respect and with him, I didn’t felt crazy, humiliated, or invisible.

My new doctor took my hospital results and requested more tests. A month later, I underwent a laparoscopy and a hysteroscopy. During surgery, he not only removed a fibroid (not a cyst) but many small fibroids. And he told me that what I had been feeling - all the pain and heavy periods, was endometriosis. Something I had asked, several times in the past, to be considered.

The news felt like a deep-seated sigh finally releasing from the darkest parts of my lungs. Here it was, something that FINALLY resonated. Something that made me finally believe, ‘I’m not crazy after all.’

Then, while I was basking in this newly uncovered truth, my doctor continued to explain that if I wanted to have children, I had a very small window to work with. He believed that due to my age and the amount of endometriosis that had spread throughout my pelvic region, I maybe had one year to try and get pregnant. BUT that one year would require shots, hormones, and sex. Unfortunately, due to COVID, the shot I needed was not available. And although I could take the hormones not having a partner (recently single and brokenhearted), would make this journey very difficult.

I was devastated by this news. I held in my tears - I choked on them in the back of my throat until I made my way to my car and broke down. For years, I held on to the dream of being a mother. Anytime I expressed my fears, others would try to convince me to have hope and to not stop believing. Many believed that it would happen someday when it was meant to or that it would happen at the right time, or with the right person. I wanted to believe so I buried my fear of infertility under a thick comforter of optimism. But really, I always knew.

Months after my surgery, my periods seemed to just get worse and worse. My doctor recommended medications that could potentially help alleviate the endometriosis pain, but in the end, there was no change. Finally, an ultrasound confirmed that I had even more fibroids. Many were even larger than before, one was even larger than my uterus, and I was tasked to face my ultimate fear. I needed a hysterectomy.

~

It's been four weeks since my surgery, which according to my doctor revealed “a lot of disease inside” of me. Not only did he remove a VERY large uterine fibroid but many fibroids, and a large amount of endometriosis that spread to my bladder and bowel. This is known as Stage 4 of endometriosis. There was also the removal of my uterus, my cervix, and my fallopian tubes. I was, for now, still hosting my ovaries that would (hopefully) continue to regulate my hormones.

Some days, I am filled with absolute fear. I often worry and wonder, what if my future partner doesn’t want to be with me because I can’t physically have children? Does my hysterectomy make me less desirable? Will it drastically change my body or my sex drive?

There are days where I feel nothing. A distant sadness creeps in when I see a baby on a TV show, or when I hear about another pregnant friend. I feel sadness knowing that I’ll never feel a child growing within me, or see the cute button nose that’s been passed down from generations before me. And I feel sad when I think about how others seem to be breezing by me with their families, and I am standing still.

I have moments where I feel grateful. It feels like a HUGE decision was made for me. I’ll never have to choose between family and a career, or family and travel, or family and dreams. Not having a child leaves many doors open for me. Chances to take opportunities that otherwise

wouldn't exist for me. And I have to believe that there is something else for me in this life, something I just can’t yet see.

I can’t deny that I often feel infuriated. I’m angry that it took over twenty years to be heard, believed, and listened to. I think about all the time that was wasted. How many doctors dismissed me and made me - the patient, feel unsupported and unheard. I feel angry that it took so long to find the right doctor, wishing I had better access to care when I was younger. Maybe then, I would have been able to have my own child.

And I’m angry that somehow through all of this, I feel like the universe just felt I wasn’t worthy of this kind of life experience.

I know that many people don’t understand my sadness or anger. The answer, for them, simply exists in adoption, foster care, or being a stepmom. It's exhausting trying to explain that being a mother - for me, also existed in the experience of having my own child. Unfortunately, I can’t see the future. I’m not psychic. And I’m not completely closed off to these ideas but for now, it's not something I am seeking and quite frankly, tired of hearing. To me, it feels like a passive statement. As if, because no one knows what to say, they use the typical response to move the conversation elsewhere. I make them uncomfortable.

Looking back over the last twenty-three years, I realize that I spent so much time viewing my period as an enemy. An enemy who occasionally ruined a good date, a vacation, or even a work presentation. But through this journey, I’ve realized that my period was working hard for me to advocate for my body. Through every means possible it tried to get my attention. For over twenty-three years it basically shouted, “Something isn’t right here!” It doubled me over, demanding my attention by any means necessary. And instead of listening and advocating - demanding a further look, I dismissed it because others dismissed me.

Never again will I ignore my body. Never again will I let someone tell me that it's just a bad period/headache/stomach ache/etc. Our bodies are constantly speaking to us, so my question for you is, are you going to listen?

-Felicia Sabartinelli

Felicia Sabartinelli is a sixth-generation, Coloradoan whose poetry and personal essays have been published in major magazines, newspapers, and anthologies. Many of her personal essays are still in wide-circulation today like, My Miscarriages Ruined My Marriage, The Invisible Hierarchy of Grief that recently won a Writer’s Digest award, and I’m So Allergic, Event Fruits and Veggies Can Kill Me. Her first play, The Light & Dark of Matter opened in NYC to rave reviews. When she is not writing, you can find her acting, painting, traveling the world, binge-watching her favorite TV shows, or speaking on the topics of creativity and self-realization. Learn more at FeliciaSabartinelli.com