Nobody believed my pain

Main header for Nobody Believed my Pain

By Sachiko Ishikawa | Translated by Ayşe Haruka Açıkbaş | Illustrated by Ai Masuda

My menarche, or my first menstruation, started in Easter Week during my last year of elementary school, when I was almost 12. I don’t believe for a moment that I’m the only one who got scared and confused, yet a little bit excited to be at the doorstep of puberty. As many children that age, it took a bit for my hormones and my cycle to stabilize. I kept track of it on my calendar by circling the dates with a red pen, and I more or less adapted to the regularity of being on a period. 

I also got used to the intense bleedings that would soak through pads, underwear, and stain my chair at school, in Barcelona, Spain. I got used to layering pads one on top of the other at night, and still soak the towels and sheets in my sleep. I got used to the exhaustion that my period brought with it, the bone-deep tiredness that didn’t go away despite sleeping twelve hours a night. I thought this was normal because nobody had told me it wasn’t. In fact, I know now that the (temporary) compulsion I had to eat my hair, paper, and ice, were symptoms of anemia. 

Things escalated in middle school. While in elementary school children didn’t talk openly about menstruation, in middle school I noticed that other kids who were on their period weren’t affected during PE. They would run and jump normally, albeit with a complaint here and there about aches, whereas I would run out of breath and get dizzy if I overexerted myself. 

One day, however, the vague questions in the back of my head turned into full-blast siren-like alarms. I remember an excruciating stab-like sensation in my guts, icy and hard, as though claws made out of lead tried to scramble my insides. I was overcome first with diarrhea, then nausea and vomiting, dizziness, tremors, and by the end of it I was delirious with pain. At the time, my parent called the local clinic, and a physician was dispatched to come to my house to check if it was appendicitis. I knew what the appendix did and what happened when it ruptured by then, so I was wrapping my head around needing surgery… when the doctor turned to my parent and said “It’s her period.”

I wasn’t on my period. I hadn’t started it yet. When I disagreed with him, he just shrugged and said “You’ll be starting it today; these are period cramps. Your body is pushing the blood out as it would with labor, I’m not sure why.” And then he injected me with a painkiller in my buttock. 

That was the first time it happened, and sadly not the last. 

At an average of once every three years, I would have an episode. I would have the same symptoms—GI issues, severe dizziness and shaking, and pain-induced delirium. Normal OTC painkillers did nothing. Several times I was brought to the ER by ambulance, convinced that I would die, and every time the doctors would look at me, puzzled, and say “Oh, it’s just your period.”

When I was 16, the paramedics rushed me to a hospital in Barcelona, and while I was being wheeled in a nurse stormed into the hallway. She took one glance at me and told the paramedics “You wasted an ambulance for this?”

When I was 28, the paramedics rushed me to the hospital in Tokyo. When I requested a follow-up a month later, the same doctor who did an intravaginal ultrasound with me sobbing in the chair, looked at me from his desk, over a meter away from me, and said “It’s just your period, it’s normal that it’s painful! You women always get so worked up thinking there’s something wrong with you.”

I was ugly-crying on the train on my way back.

The pain didn’t lessen with time, I just learned how to manage it with OTC meds. 

The bleeding didn’t lessen with time, I just learned how to manage it with pads.

Of course, I had done extensive research into my pain. Hours upon hours of Googling symptoms and words and I knew, I knew what was wrong with me. And every time I went for a check-up with my OBGYN, back in Spain or Japan, every time I talked to a doctor about pain issues, they would assure me “some people just bleed more than others, and some people just have pain. Try to manage it like you’ve been doing until now.” Don’t get me wrong, those “attacks” are thankfully not monthly, but my menstruation pain is agony either way. Every single time, on the first few days of my periods, everything hurts. Cramps stab my stomach and have me gasping for breath, crying out, and sitting up or standing or lying down—nothing brings relief. The pain sometimes wakes me up and keeps me awake, clawing at the sheets and whimpering.

The thing nobody had told me about chronic pain is that, other than the disease sucking up your energy, every time someone denies your condition it chips away at your spirit. For years at a time, I would give up. I would tell myself that nobody would believe me, that I had been given a mean uterus. And I eventually stopped fighting. 

In 2020, I probably saved myself without even knowing. With lockdown and telework now enforced, I started using the menstrual cup. Like with everything I do, I had done extensive research before buying it and I remembered reading “we don’t bleed as much as we think we do.” I clung to those words, happily deluded that perhaps everyone else was right: that I couldn’t possibly bleed as much as I thought I did, maybe it was all in my head. A cup would be proof of it. I could use it for up to twelve hours and, even if the pain was there, it would put my mind at ease. Twelve hours. At least eight. It couldn’t be that bad.

It was worse. I don’t know what hit me first, the disappointment or the shock. With a bit of trial and error (the menstrual cup has a steep learning curve) I figured that I needed to change my cup an average of every two hours. Sometimes I could wait three hours. Sometimes one would have me running to the bathroom. I calculated numbers in my head: if I was using a 40ml cup every two hours, in just twelve hours I had bled about 240ml – way over the 80ml the NHS (UK) considers a “heavy menstrual bleeding or more in each period.” According to these numbers, I was bleeding in 12 hours three times as much as someone with “heavy periods” during their whole cycle. 

I freaked out. Finally, it hit me. I was right. All these years, two decades, I had been right. My period wasn’t normal and there was something wrong with me. 

It took me almost a year to gather the courage to leave the house and book an appointment with my doctor in Tokyo. I even brought my cup with me, in its cute little cotton bag. As I sat on the chair of the office, I was met with a new doctor from the same clinic. He had my file with him, and when I explained that I was concerned about the pain and the bleeding, he started to give me the well-known speech of how normal it was. I almost backed down, as I had always done, except this time I took out the cup and I told him. And his face changed, his jaw dropped. He took me to do another ultrasound and saw it. He saw my disease through the black screen. “You were right, it’s here.” I gripped the chair, more out of trepidation than discomfort. “You have endometriosis.”

In that chair, vulnerable as I was, I started to cry.

A blood test sealed the deal: my CA-125 levels were high, and my iron levels were apparently so low the nurse dropped the results when she read them (my doctor explained this to me, possibly trying to make me laugh). 

With this diagnosis, I am finally free. I can name my condition. I had suspected for over a decade, chasing after doctors, begging them to listen to me. Crying in pain and humiliation every time I stained my clothes in public. It took me two decades to find someone who would believe me.

It’s no wonder endometriosis is an illness that takes an average of 10 years to diagnose despite it affecting about 10% of people who menstruate. It should never be on the patient to prove that they’re suffering. 

And I still cry sometimes when I think about my journey. Tears of relief that the fight to be heard is finally over, tears of hope that now I can actively try to manage this disease, and tears of anger and despair that I suffered for 20 years and nobody believed me.

I share this story today for two reasons. One, because I hope my experiences will help someone else navigate a system that is unfair and often cruel. And two, a more selfish one, because I am in desperate need of catharsis, and though it’s a new beginning, like my menarche was back in the day, I long to heal from both the pain and the trauma of not being listened to.

3 thoughts on “Nobody believed my pain”

  1. I am a British male who works in a theatre box office with 3 other women and we discussed everything, one of them has this too.

    It took a long while for her to be diagnosed and we were there for her throughout, wether it be covering when she was poorly or taking over when she had to lie down from the pain. It was awful to see her suffering and having it take so long for it to be discovered. Here in england this condition has had a lot of attention in the media over the past year and the 10 year diagnosis is the same here too.

    All i can think of is how glad i am that I work with women because these issues among many others related to health, sex and mental health are often never discussed among men. I have learned more from them than school ever taught me.

    As a man and not being japanese or living in japan, i know my voice on this issue doesn’t carry much weight. However, I can hope that articles like these encourage people to talk and keep talking about all these issues that are often left unheard. Talking can be so powerful and when necessary, shouting.

  2. “It should never be on the patient to prove that they’re suffering.”

    Oof. That’s 😔. This should not be the case. Time and time again I’ve heard how this disproportionately affects women too.

  3. はじめまして。長い間誰にも理解されずにとても辛かったですね。私は男性ですがTwitterでpmdd.pms.等の生理に関する特別な症状があることを知ったのは一昨年のことです。医者は患者の発言に謙虚に向き合わなければならないと思います。他にも医者が周知していない線維筋痛症などの人が理解されてきませんでした。筋痛性脳脊髄炎等も怠け平等と呼ばれています。私も精神疾患を患っています。皆さんの声を発信していかなければなりません。

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