– BY MARIA ROVITO –
In July 2020, I was diagnosed with endometriosis after years of doctors not listening to me expressing my pain. While I was 26 when I was diagnosed, my uterus was a huge influence in my life since I began menstruating at nine years old. This is a love letter to my uterus – although my uterus put me through so much pain and suffering, I do not want to part ways with it.
I have never had a break from pain.
Every period I have ever had has been miserable. I dread weeks three and four of my cycle. Each month brought on extreme suffering that has only gotten worse as I age. There are days that I think you hate me. You never seem to settle down, no matter what I do. Although I get angry, sad, and frustrated because of what you have done to me, I do not hate you.
‘No one taught us at Catholic school what a period was’
You began making waves in my life when I was nine years old, when I had my first period. That day, I thought I soiled myself because no one had taught me what a period was. When I went to the bathroom that morning at school, and a red-brown stain appeared on my underwear, I went about my day in extreme pain because I didn’t know what to do. No one taught us at Catholic school what a period was. When I was taking a bath later that night, my mom found my underwear in the wash and told me that I had just gotten my first period.
I felt betrayed by you, even though I didn’t fully know who you were. I was not mature enough to deal with the gendered experience of being a woman. As I have told many people, I felt like a freak.
None of my friends had their periods by that age. We wouldn’t learn what a period was until the eighth grade. When my mother explained what was going on and bought me my first pack of pads, I felt completely lost. This is how people have babies? Does this mean that I am going to have a baby at nine years old? Why don’t boys deal with this?
‘My doctor said that period pain was normal for girls’
I was embarrassed to carry pads with me to school because I didn’t want anyone else to know about it. Every month I went to the nurse’s office and asked for pads, and each time they gave me a verbal warning about it. Eventually the nurse called my mother because I was using too many pads and our little Catholic school didn’t have the money for it. I then switched to using toilet paper.
By the time I was twelve, I was angry because I was in pain every month and people kept expecting me to function normally during these times. My mom eventually took me to my doctor about my period pain, and my doctor told her that these things ‘were normal for girls.’ For the first time, I was gaslighted — which would happen countless times since. I believe that my anger during those moments was directed toward the patriarchy for placing these burdens on me. It would take me years to actually get help.
You kicked and screamed so much that my doctor agreed to try several different types of birth control pills when I was fourteen. That’s the medical answer for crazy women: give them hormones. While I was on the pill, you calmed down. I no longer had a problem with you. But, I desperately wanted to be saved from you. I thought during those times that I would never have children or go off the pill because I didn’t want to deal with your nonsense. You have tried to destroy me before, and I know you would do it again. I didn’t trust you. You needed to be controlled. I even thought that I would ask for a hysterectomy because of how much you have ruined my life.
‘I tried surgery, physical therapy, changing my diet, resting – nothing could handle you’
During the first year of my PhD, I would be diagnosed with endometriosis. At this point, I knew you were completely out of control. I tried having surgery, physical therapy, changing my diet, resting. I am now on so many drugs to stop my hormones and can barely move most days. There was nothing I could do to handle you.
When you are no longer in command of your body, you feel like a scientific experiment. A monster. A freak, yet again.
You grew chocolate cysts in my ovaries and red, white, and clear lesions of cells inside my abdomen. I cannot begin to describe to you how absurdly painful that is. I don’t know what I did in my life to set you off. Maybe it was the stress of school. Maybe it was my genetics. Maybe it was the way I ate. Maybe it was a freak accident.
You were a feral child, and you were raging.
I know you thought you were trying to help me by growing lining everywhere. You thought you were strong and independent. Perhaps, you were confused. I don’t know what I did to confuse you.
The lowest point of my endo journey was when I blacked out from pain while driving. I ended up losing control of my car and crashed on the sidewalk on the opposite side of the street. People rushed over to me and wondered if I was hurt. The police eventually came. I spent fourteen hours in the emergency room trying to get pain relief.
Were you trying to kill me?
‘There is no cure for endometriosis’
My doctors told me that there is a fifty percent chance that my endo will grow back, and I believe it already has. There is no cure for endometriosis. I am still in pain after surgery. My doctors saw you as a complete problem that needed to be solved.
As I researched treatments for endometriosis, the question of a hysterectomy popped up. While a hysterectomy is not a guaranteed cure, many people have found that it does help their pain. The way the medical community sees endo: removing uterus = problem solved.
As much as I would want a hysterectomy and an end to this horrid disease, I know that I would be robbing myself of possible future happiness. A hysterectomy means that it is definite that I won’t have children of my own.
‘My friends announce their pregnancies and I get bitterly jealous’
The issue of future children leaves a huge question mark on my future. Would any man want to be with an infertile woman like myself? Do I have kids and inflict this disease on my possible daughter(s)? Will I need to spend tens of thousands of dollars on in vitro fertilization? Will you finally work normally?
My friends announce their pregnancies on social media and I get bitterly jealous. I turn off my notifications for each woman that has a new baby in my news feed. I unfriend women I’ve known since childhood who have created families by now. In a twisted way, I want to inflict just a few minutes of my endo pain on them, just to see how they like it.
Not only would the question of children be definitely out of my future, but society has equated womanhood with having a uterus and ovaries so much that I feel like I would be robbing myself of my identity. It is known that some women who have hysterectomies fall into depression. So much of what the patriarchy deems as ‘womanhood’ is equated to your ability to have children. If people do not see me as a ‘woman’, then what am I? Would I be a walking shell of a person? Would my endo rob me of my female identity as well, in a twisted way?
‘Unlike many doctors, I don’t see you as ‘diseased’, ‘abnormal’, or ‘barren”
But, ultimately, I don’t want to part ways with you. I do not see you as ‘diseased’, ‘abnormal’, or ‘barren’, like many doctors would say. As the poet Anne Sexton writes:
They wanted to cut you out
but they will not.
They said you were immeasurably empty
but you are not.
They said you were sick unto dying
but they were wrong.
You are singing like a school girl.
You are not torn.
As much as doctors and society try to tell me that you are ‘sick unto dying’, I don’t want to let go of you. Does my disability always bring dark, stormy clouds into my life? Although many disabled people view their impairment in a solely negative way, there are positive moments I experience with you. You are not “immeasurably empty.” You are filled with happiness, love, and joy.
I look at the path I have taken with you and my endo diagnosis, and tears are brought to my eyes because of the mental torment I have been through. I want to look at our future together with optimism rather than negativity. I want to be healed of the physical and psychological damage that we have been through, although I don’t know how to do that. I want you to keep singing and dancing.
About the author
Maria Rovito is a PhD student at Penn State University (USA) living with endometriosis. She dedicates her scholarly research to fighting stigma against endo and other menstrual disorders within society and the medical system. She hopes that by sharing her story she can help other people who are dealing with this issue. Follow Maria on Twitter.
Picture left: courtesy of Maria Rovito, taken by Kara Clouser.
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