My Life With Endometriosis And Fibroids

I had the worst periods imaginable... And then learned why

My Life With Endometriosis And Fibroids

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I separate my life into two clear phases. There’s life BP (before period) and then life AP (after period). Yes, this is a real thing, I promise.

Let me explain.

The year 1999 BP was pretty freaking spectacular. Britney Spears’ “Oops I Did It Again” AND Backstreet Boys’ “I Want It That Way” both came out in the same year, just to put things in perspective. I had good grades, great friends, and was just weeks away from my tenth birthday. Double digits, people!

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And then, one day, life just changed. Isn’t it weird how that happens? There are so many insignificant days in a year and sometimes it feels like nothing in your life is changing — and then one day, one minute, one moment — it changes forever.

I remember crying and practically crawling home from school because it felt like a million little people were inside my stomach jabbing me with sharp knives. I got home to an empty house and sat on the toilet wailing. I looked down and all I saw was RED.

It’s funny to remember this moment now, because at the time, I fully thought I was dying. I had no idea what a period was because I was NINE years old, so I thought it was the end for me. A tragic, nearly-ten-year-old life cut short.

My guess is that my parents were waiting for me to turn 10 before explaining that every month for the rest of my life, I would bleed for a week and not die. It would have been nice to have this information ahead of time, but clearly timing wasn’t on my side.

When my parents got home, they carried me to bed. My stomach looked like I had eaten a beach ball. I was breathing heavily, had an ice pack on my face and a heating pad on my stomach. The period pad they gave me was the size of the iPhone 7 plus. The pain was equivalent to a tractor running over your foot (obviously this has never happened to me, but it’s sounds about right). This was 1999 AP.

Every month after that — for the next nine years in fact — I had the worst periods imaginable. Worse than anyone I knew. I’m talking severely bloated, crampy, have-to-miss-school-and-work-kind-of-periods. But at the time, I honestly thought that this was just how it went. I thought that my friends were #blessed and I had bad period luck.

I didn’t understand how some girls could play kick-ball on their periods or participate in P.E., but I thought I should just learn to deal with it. This was just the way my periods were.

But my issues were greater than just the week of my period. Even though I made healthy eating choices and made sure to exercise, I was always severely bloated. My stomach poofed out all the time. I hated that my friends looked great in bathing suits and I looked slightly pregnant.

I remember crying looking at my body in the mirror some nights. My bloatedness really impacted me emotionally. Every time I tried on clothes, I would have to go two sizes up just in case my stomach decided to inflate. Despite all this, I was scared of going to the doctor and hated thinking that something could be wrong with me.

And so, like many teens, I didn’t see my first gynecologist until I started having sex (in college). I went on the pill for my bad cramps and to prevent getting pregnant.

. . .

It wasn’t until three years ago, at the age of 24, that I finally uttered these words to a gynecologist: “Hey, so I get really bad cramps and get really bloated every time I get my period. IS THAT NORMAL?”

My gyno decided to give me my first ever pelvic ultrasound that very day — and we discovered that I have fibroids.

Fibroids are tumors that grow in your uterus. Re-read that, cause it is a scary sentence. Ready for the most important follow-up sentence ever? They are usually non-cancerous.

Fibroids are little balls of muscle cells and fibrous tissue but they grow in areas you do not want them. To put it plainly: they f*ck sh*t up in your womb.

Let’s pretend your uterus is the engine of your car. Now, imagine I opened the hood and threw lemons and tennis balls and marbles in there. If you tried to drive, chances are something would go terribly wrong.

So my gyno tells me this, and obviously, because I’m a normal human adult, I shouted: “WHAT!? AM I DYING!?” And then I started hysterically crying, because duh.

He explained that fibroids are typically not cancerous, and told me that I had over seven fibroids growing in my body and that these little assholes  had been growing for years — probably since I got my first period. In my case, it turned out that they were so big that they were going to crush my fallopian tubes (meaning I wouldn’t be able to have kids) if I didn’t get them out ASAP.

Do you realize how crazy it is that I never saw a doctor for my painful periods?

This was another one of those days where my life changed in a moment. I remember walking around the mall earlier that morning without a care in the world — and then a couple hours later, I was having a conversation with a doctor that pretty much saved my future kids’ lives.

Just so you keep reading (and don’t freak out and start googling your way into paranoia), I’m going to tell you a little bit about fibroids:

  • 20-80 percent of women have fibroids.
  • Many never experience symptoms or even know they have them!
  • Some women are unaffected and other women (like me) are very affected by them. This is due to the size of the fibroid(s) and the location in your uterus. For example, a fibroid sitting on your bladder can cause you to pee a lot. While a fibroid sitting on the top of your uterus can cause bloating.
  • The size can vary from less than a centimeter to the size of a small melon.
  • To this day, doctors don’t fully know the cause of fibroids, but some sources say it could be linked to genetics (which made sense to me, because one of my aunts suffered from fibroids, too).
  • The most common symptoms are painful periods, bloating depending on where the fibroid is, and in some cases, infertility. Other symptoms include prolonged periods, heavy menstrual bleeding, constipation, frequent urination, and backache or leg pains.

Leaving the doctor’s office that day was heavy. On the one hand, I finally had an explanation. But I also felt scared. I was 24-years-old and had been living on my own in L.A. for a couple of years. My parents were all the way across the country in Florida. They were supportive and said they would come be with me for the surgery. I had a great group of friends who all listened as I talked about getting the surgery.

Oh, and it was pricey, too. The entire surgery cost around $43,000, but luckily I had great insurance and only had to pay around $6,000.

And honestly, at 24, I hadn’t really thought much about having kids yet. I was as single as ever, but the thought of not being able to have kids one day was definitely depressing. I had my whole life ahead of me, right?

And there was one last thing. I was scared that the scar it would leave would be unattractive — and that guys wouldn’t want to have sex with me once they saw me naked. It didn’t take long for me to realize how dumb that was. But I would be lying if I didn’t tell you it crossed my mind.

. . .

During my surgery, my doctor removed all seven of my fibroids (yay!) but discovered something else: another diagnosis (nooo!). It turns out I had endometriosis, too.

Endometriosis is when the layer of tissue that normally lines the inside of your uterus grows on the outside of it instead. So remember the engine of your car with the random tennis balls and lemons (fibroids) in it? Let’s say I opened the hood and threw tissue paper and silly string all over it — this is endo.

In a way, I was lucky to have gone through with the surgery because my doctor took out the fibroids AND got rid of all the endo he could find.

The main way women are diagnosed with endometriosis is through a pelvic exam, but what I learned is that pelvic exams can indicate a high suspicion of endometriosis, but it can’t confirm it. Another way is through ultrasound, but it won’t definitively show your doctor you have endo. The only real sure way to find out you have it is through Laparoscopy.

Laparoscopy is when a laparoscope (small camera) is inserted in your body through a small incision near your navel. During this procedure, they can pinpoint exactly where unwanted tissue is and how big it is.

For all these reasons, I am extremely thankful that I said yes to the surgery. None of us could have known that I had a separate diagnosis waiting to be discovered.

It’s important to note that endometriosis and fibroids are two totally different things. I just happen to have both.

The main symptoms of endometriosis are pelvic pain, painful periods, pain during sex, and infertility. Endometriosis is also sometimes linked to irritable bowel syndrome or pelvic inflammatory disease.  

A couple more facts about endometriosis:

  • It affects 176 million women worldwide. 1 in 10 females in the U.S. have it.
  • Endo affects women equally across all racial, ethnic, and socioeconomic backgrounds.
  • Endo usually causes the most symptoms through our reproductive years.
  • Many women are undiagnosed.
  • Lena Dunham, Halsey, Tia-Mowry Hardict, and Julianne Hough have endometriosis.

It’s been three years since I had my surgery and I get ultrasounds every year to track my fibroids.

Now that I know what’s going on in my body, I work hard on educating myself about the best foods and lifestyle for my body. This has helped me lessen my symptoms.

For example, I tried an elimination diet called FOD-MAP, which helped with my bloating. I also go boxing a couple times of week and try not to have Taco Bell every day — it’s a struggle but I try. That Crunchwrap Supreme though…

Since my surgery, my symptoms have decreased and my periods are fine (when I’m on birth control). But I know I am very lucky, because some women still experience a lot of period pain with endometriosis.

My next step is looking into freezing my eggs so that I can more options for having children one day (if my endo and fibroids get worse). It’s the best security I can give myself.

The biggest issue I still face is learning to love my body when I’m bloated.

I’ve learned that being hard on myself is the worst thing I can do. Learning to be my own best friend is part of my journey and I have the greatest parents and brother anyone could ask for. My friend group is incomparable. They make me feel like I’m Beyonce whenever I complain about being bloated.

The biggest regret I have is not listening to my body when I was younger. As a teen, I was more concerned about boys and clothes instead of the thing that should have mattered most: my health.

The moral of my story is STAY WOKE. I got my period when I was nine, but didn’t discover that I had fibroids and endometriosis until I was 24. That’s 15 years!

If your body is acting weird, go see a doctor. I’m so glad I did. And once you do, whether there is something medically going on or not, start to invest your time (just a little bit each week or month) to learn ways you can help your body feel better. Developing a good relationship with your body is a lifelong exercise.

Food, exercise, mindfulness, meditation, friendship, and therapy are just a small fraction of my life AP. But it’s a good start.

If you have any questions or want to share your story with me, follow me on IG (@nazperez) and drop me a DM or comment! I would love to hear from you.