My doctors told me my pain wasn’t real, but it turned out to be endometriosis

I have been battling my uterus since I first got my period when I was 13. Whenever I had my period, I’d cry, vomit, lay curled up on the bathroom floor for hours, and in general turn into an entirely non-functional being. In short, my periods were absolute nightmares, from the very beginning.

Despite all of this, I was assured through my teenage years that everything I was experiencing was entirely normal. Periods hurt, I was told, it’s the way of the world. Nausea happens. Grab some Midol and buck up. Because of this, I did my best to hide the fact that I was in so much agony every month. I felt ashamed all through my teenage years and early adulthood — every other girl seemed to be managing her uterus just fine, while some days, I couldn’t even manage to get out of bed. Clearly, I was just a weak person, a huge baby, and a failure as a woman.

As I got older, my symptoms worsened. I began frequenting emergency rooms, every time convinced that I must be dying. I’d beg for them to give me some relief as my insides felt like they were being shredded and I was bleeding so much I felt faint. Every time, they’d slap on an IV, wait til I stopped sobbing, and send me out the door with a bottle of Vicodin, assuring me that I was just fine.

After a particularly rough ER visit, they insisted I make an appointment with my doctor to discuss these episodes and I found myself waiting in the familiar exam room yet again a week later. I had made an appointment with a different doctor in the same office in hopes that maybe she would see something everyone else had missed. She came in and went over my charts, and quietly did a routine check. I explained to her all the pain I had been feeling and how disruptive it had been to my life. I told her about the research I had done, and how unheard I felt when people told me I should just deal with the pain. She seemed to humor me, and quickly dismissed any possible diagnosis that I desperately named.

“Have you thought about seeing a psychiatrist?”

The question caught me slightly off guard. Doctors had repeatedly told me that nothing was physically wrong with me, implying that perhaps my problems were mental, but no one had said it outright yet. The familiar sting of shame washed over me yet again. I told her curtly that a psychiatrist would not be able to stop the physical pain that I was feeling.

“Neither can we, if there isn’t any physical evidence of anything going on.”

So I stopped going to hospital, and I stopped going to the doctor. There were several years of me suffering in silence. I would withdraw when I knew my period was coming. I’d cancel plans, become unreachable. I didn’t want people to know that the reason they hadn’t heard from me in a week was because I was too much of a wuss to handle my period. I relied on my bottle of Vicodin to get me through engagements I couldn’t get out of.

Obviously, there were huge emotional and social impacts from this coping method. I was looked down on for being such a flake, accused of being a pill popper, a hypochondriac, and a drama queen. The few times I tried to explain, people would ask, “Then why don’t you just go see a doctor?” Unless you’ve been dismissed as many times as I have, you’d never believe the things doctors will say to a patient when they don’t understand what’s going on.

Doctors had told me I was experiencing the same thing every woman experiences, maybe a little harsher, but nothing some Ibuprofen couldn’t handle. A doctor told me I simply had a heavy flow and should buy extra absorbent tampons. One physician accused me of drug seeking behavior and shoved me out the door without so much as a check-up. I once had a male doctor ask me if I understood what a period was, and offered me literature explaining menstrual cycles and symptoms. A person can only take so much belittling before they stop seeking help.

Depression was inevitable. As an already anxious person, dealing with something so debilitating with no means of relief caused me severe mental anguish. I hated myself for being so weak. I hated other people for not understanding that I didn’t want this. The depression began surfacing in all areas of my life, and I finally did end up making an appointment with a psychiatrist.

On my first appointment with her, I went into detail about the ways depression was affecting me. As I told her about the friends I had lost or was losing, the rifts it was causing in my relationship, she quietly scribbled in her notebook and encouraged me to spill all of the things that I had been viciously hiding. Finally, we reached the topic of my problem uterus.

I’d been dealing with it so long that I had just accepted it as part of life. I thought, this is just how things would be and there was nothing to be done about it. Part of me had even begun to believe that maybe the severity of my pain was in my head like the doctors had implied. Or maybe every girl did wake up to black out-inducing pain the morning of her period. Maybe every girl wasn’t able to leave the house the first two days of her period because she is bleeding so profusely. Maybe it had just taken me an extra few years to perfect the art of discretely excusing myself to the bathroom to vomit several times a day.

She listened calmly and then asked, “Have you ever heard of endometriosis?”

I hadn’t. Nobody had ever mentioned that to me over the six years of near monthly visits to the doctor. It had never been mentioned during my dozens of emergency room excursions. They had all just waited impatiently until I had calmed down enough to leave, unsatisfied and terrified of the next bout of pain.

She shook her head and gave me the number of a gynecologist in the next city over. I called immediately after leaving and the next week, I was in stirrups talking to a woman about all the symptoms I had been told time and time again were just part of being a woman. For the first time in my life someone assured me that none of this was normal and I wasn’t crazy.

I never thought I would cry with relief as someone told me that every month I was bleeding internally, but I did. She explained that I had endometrial tissue growing where it didn’t belong and every month when my hormones kicked up, it reacted just as my uterus did. After several visits and monitoring, she explained my body bled itself anemic and that worsened a lot of my symptoms. She was just as baffled as I was that no one had ever thought to check beyond my menstruating uterus.

My battle has really just begun now that a name has been put to the monster that’s been creating a mess of my life. A lot of other women have far more information about it than I do and I am benefiting greatly from their help. I have a long path laid out before me to reclaim my body, but just having an understanding team of doctors and patients that know and understand what I’ve been going through, not just with the physical symptoms but with the complete ignorance and dismissal of an unacceptable number of doctors, has helped my mental health immeasurably.

You are the only one that truly knows your body. Just because you don’t have a medical degree does not mean that you do not know when something is horribly wrong. Endometriosis is a fairly common condition that millions of women suffer from, yet there is very little being done to understand it, and doctors are often not taught much about it. If you are suffering, don’t accept other people assuring you that you aren’t. Keep pushing, find someone that will listen, and stay strong.

Niki Leith is a freelance writer based out of Los Angeles. She is a former pre-med student that left the glamorous life of the lab to pursue the luxurious lifestyle of a writer. When she isn’t in an over-caffeinated writing frenzy, she can generally be found drinking whiskey and watching nihilistic foreign films.She has pieces featured on XOJane.com. You can follow her on Twitter @violentpeach to keep up with her current endeavors.