Endometriosis Ruined My Life

This is a post I wrote a while ago, and it's bizarre looking back on it now. I remember this, because I wrote it during the last cycle I had before falling accidentally pregnant. And despite how much better I'm doing now, knowing that infertility didn't affect me this time (there's a 9 month old asleep in my lap as I type this), I still fear for my future.

I also fear for the other girls out there that go through something similar to me. What I went through was hell, and I am still struggling to overcome the scars my experience left, both physical and mental. So despite it being an old post, I'll just leave it here for everyone to have a read, because I feel like it's important that I say it.

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Endometrial Fears

Since just before puberty I have struggled endlessly with pain. Pain during my period, pain off my period, pain night in night out and all through the day. There were seriously times where I would have tried to end my life, if only I could move. The pain was that crippling that I couldn’t rise, which probably saved my life a few times. Pain was a constant, and my entire life up this year, I had no diagnosis.

In year 8, my friend and I did a project on Endometriosis. At the time, I joked about how relatable the disease was to my own symptoms. I mentioned it to a few doctors, but it was ruled out over and over for some reason I was never told. I went for endless blood tests, ultrasounds, and have cameras poked inside me from every direction, checking my whole digestive tract. Yet the doctors found nothing.

I was meant to see a psych, because all that was left was mental pain. A mental disorder that meant every time I felt stressed, my body reacted with severe pain. I never truly believed the diagnosis, but I was sick of the endless doctors that told me I was ‘constipated’ and ‘stressed’ and ‘it was all in my head’. I got told that every female went through this pain, and to toughen up and get over it. I grew up thinking I was a horrible person for being unable to stand the pain that every woman in the world must deal with.

Little did I know that I had endometriosis, and that my periods weren’t normal, and that my pain was something to be concerned about.

I remember one Christmas where I was young and hadn’t eaten in three days. Christmas is my favourite day of the year simply because of my Grandmother’s cooking, so when I didn’t eat a thing, they knew something was wrong. They threatened to send me to hospital if I didn’t eat, so I forced in bite after bite, feeling horrible. After a few days, the pains passed. That was a common occurrence, being unable to eat for hours and days at a time. Not being able to attend events because I was too sick, or simply too scared that I would get sick.

My periods were irregular. Sometimes they were two weeks apart, but usually they were closer to two months apart. Sometimes they’d go for two full weeks, but ten days was my average. Seven days was short for me, and I worried if I ever had a six-day long period. The bleeding was heavy. There were times when I had to change my heavy pads during every class and between classes as well. It gave me extreme anxiety, and I suffered badly from stress. I couldn’t put tampons in, because no matter how I did it, they caused me too much pain. I carried multiple pairs of undies around in my bag with me just in case.

Every night I slept with a towel under me on my bed. I woke hourly every night from the pain, and every morning I had to bolt to the toilet in agony to attend to my menstrual flow. It was always worst in the mornings after I’d been lying down all night. Then I’d return to my bedroom to change the towel and my pants, because it was a common occurrence that I’d leaked through even if I changed my pad every hour or so during the night.

I was told that I was normal. I wasn’t. I don’t want other girls going through what I did. My pain ruined my life. I suffered from severe depression and anxiety, unable to do almost anything. I had suicidal thoughts that my family still doesn’t know about. This was daily. Living was a struggle, and all of my problems seemed to have related back to my pain and suffering, and the fact that everyone else thought I was just being a wuss because the doctors couldn’t find anything actually wrong. My mental image of myself was terrifying, and I had many sleepless nights filled with nightmares that I’d bleed through in class, or never be able to get off the toilet because the bleeding was unstoppable.

Then, in early 2018, I got a very bad UTI (urinary tract infection). I’d had them many times before, but this one stopped me from doing anything. I literally was toilet bound with the urge to pee, without needing to pee. It sucks having urinary incompetence when you’re an otherwise perfectly healthy women that’s never had kids. The doctor couldn’t identify the bacteria causing the problem, though there was blood in my pee. I got sent for an ultrasound to see what was wrong.

Ultrasound turned up clean for my kidneys and bladder (for the record, drinking that much water when you’ve got a UTI is nearly impossible, I can’t believe they ask that of people). My ovaries on the other hand, were NOT clean. I had a large cyst the size of an apple/orange. I had felt it for years, the constant pressure that was there, but it must have been smaller when I was a kid. Back then they didn’t give me a pelvic ultrasound because I was tiny and hadn’t had sex (obviously, I was a high schooler with social anxiety).

I was referred to a specialist, and within a month I was scheduled for surgery. The surgery went well, and in the month between my ultrasound and my surgery I’d grown another cyst. The endometrial polyp they’d seen on the scan hadn’t been there during the surgery, and there were no other signs of bad endometriosis. Just the cysts to worry about.

I went back to my doctor, worried after the surgery that the cysts would come back. I got given tranexamic acid tablets, which I have to take three tablets of four times a day (12 a day!) on the first four days of my period. They are to help with the heavy bleeding and hopefully reduce the chance of cysts returning, or at least the speed in which they return. But before I could take them, I hit some other problems.

My period was late. Since the surgery, I’d been perfectly regular. Able to tell when I ovulated, able to guess when my period was due within a day or two. Not this time. I was late, and I was terrified. I had been off birth control since January before I had all the problems, and I wanted to be pregnant so that it was something GOOD, and not something wrong with me AGAIN. But negative tests every day, negative blood test, and it was finally ruled out.

I did NOT want surgery barely months after my first. I didn’t want the cysts back. I want kids one day, and I want to have them safely and easily, without the endometriosis play on fertility. I went for an ultrasound, which was clean. I was tender around my ovaries, suggesting old scarring, but that was it. I got ready to give a blood test to check all my thyroid levels and hormone regulation, but then my period came out of the blue.

I was relieved it had come, but angry that I had no idea why it had come so late. It was confusing and stressed and I just wanted it regular and normal. The fear of endometriosis returning is starting to get to me, and I don’t want to return to the stressful, anxious person I once was, unable to do anything without the fear in the back of my mind. It controls me, and I don’t want to lose control.

I need help fighting my fears.