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Shay Johnson’s Story

March 31,2021

Shay Johnson has used her voice to share her experience with fibroids as an effort to help other women know they are not alone.  Watch and read more about her story below:

At one point when I would say the word fibroid- I was terrified because I had memories of my symptoms and what I had to go through when I had fibroids, but I am here to share my story and it’s not an easy story to hear.  I would notice different symptoms from dizzy spells, constant urination, and heavy clots that would come out of me.

But with the fibroids, I didn’t make the decision to figure out what was going on with me until I fainted. And that’s when everything changed. When going to the restroom, I would sit up out my bed and everything would spin. I didn’t know what was causing this, but I got up anyway – when I should have stayed still.

I got up out the bed and I remember I just fell. I hit the side of the dresser and received a cut on my head. My my face was bloody and I was just scared. I’m like, what was that? It’s time to go to the hospital.

Within two days, I was in the hospital trying to figure out why I fainted, why my menstrual cycles were extended. Where are these clots coming from? Why do I have pelvic pain? And why am I constantly in the bathroom? I didn’t understand immediately when I went to the doctor and I told my symptoms to the nurse and she said I’m about 99% sure you have fibroids.

So I asked her what it was and she said they were benign tumors that grow on your uterus. And I said, okay, I’ve never heard of this before. She said, okay, it’s nothing. It’s very common in women. One thing I didn’t like about the conversation is it’s almost as if I felt dismissed as if I’m in a common situation along with every other woman. And because it’s so common, you should be able to handle this. Like everyone else should have been aware of a situation that we never talk about. When I found out I had fibroids, I started to remember certain symptoms, because when I researched, I noticed all the symptoms and I’m like, okay, I had that in my twenties.

I had the pelvic pain when I was in my teens. So is it a possibility that I’ve had fibroids from a teenager up until now? So I believe it started then, but because we never talk about our menstrual cycles and we’re taught to be hush hush about it I didn’t know it could be fibroids.

There was no one to talk to. If my own mother is telling me how to keep my menstrual cycle quiet then who could I speak to? I did not want to go public with a situation that I was unfamiliar with. I was crying. I talked to my mother about it. She said, listen, if you’re in a position that you have a platform just to help one individual then help that person, but you have a platform where you can help hundreds, thousands, and millions.

Why not share your story? Don’t be embarrassed of who you are and your struggle to own it. So I did more. We speak up and speak out on this particular fiber situation. The more we bring awareness to women that are going through the same issues then more we help. Maybe we can even prevent miscarriages, you know, we can prevent the extended cycles. We can stop the pelvic pain. We can stop the clots from coming out.

You have options, but if you’re unaware of your options, how do you know what to do? That’s why I’m one of the many with issues because of  fibroids. Including my mental state of mind because of the many symptoms. I stopped dating. I separated myself from my family, my friends, I just became self-absorbed and I didn’t know who to talk to.

I had to get it out. There was not another day I wanted to worry about constantly going to the bathroom. I couldn’t take it anymore. I just had my surgery, but I understand that there are other options. I just wasn’t aware of the other options. You don’t necessarily have to have a myomectomy or a hysterectomy depending on your situation, but there’s another option UFE. Issues with fibroids is very common in all cultures of women, 80% of all women will get fibroids.

What level that is depends on your body. As many times as I saw my OB GYN – my pelvic pains for my menstrual cycle in my teens – they would give me ibuprofen and send me on my way. Let’s get to the core issue and figure out what we can do that. Once we get to the core issue, we can help more than we think, allowing women to understand their options.

I didn’t have the UFE option. I never heard of UFE until after my surgery. Why is that? Why, out of the three doctors, nobody mentioned UFE? It was definitely available at that time. We can give you your options to remove it so you can have more of a normal life. I know several women who are dealing with fibroids today who need options.

My friend had three surgeries…three! Another friend had a baby. She knew she had fibroids before she got pregnant. She was so terrified of the surgery because her options were myomectomy and hysterectomy. She didn’t do the surgery. So,she got pregnant. Had the baby, her baby was born with his eyes shut.

They had to laser his eyes open in order for him to see. To this day that bothers her because she felt like she did that to her baby.. She didn’t, she just didn’t know her options.

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