Myomas: The Diagnosis That Changed My Life. (Part 1)
I would like to preface this by saying, as a first generation American, as a black woman and as a person who has spent my life identifying as a loner who doesn’t need anyone, this is new.
People like us pride ourselves on being private, dealing with pain quietly, being strong and resilient in a way that is almost self-punishing to get to the victory of surviving. We attach struggling with affirming who we are, even with worthiness.
When life forces us in a direction that is painful but necessary for growth, we kind of try to beat life to the punch throughout the rest of our existence. Lately I suspect this behavior is unnecessary.
In the spirit of letting go of what no longer serves us, I’m doing the work of challenging some of these ideas where it could be useful.
I believe the general silence around this issue is surely linked to the limited research and resources for something that touches the lives of 80% of black women and 70% of white women.
Many women are asymptomatic (meaning they experience no symptoms) and can go through life never noticing them. The rest of us are not so lucky.
Over the next few weeks, I will share my story here in hopes that it will help someone going through this to gain some clarity, find comfort or a sense of hope (wishing for all 3).
2014 was a strange year.
It was a year of great beginnings, tragic endings and a discovery that continues to affect my life today.
In July of that year, I was laying on my back at the Adirondack Inn, upstate in Saratoga Springs taking a break before heading out again, pretty sure we were going kayaking.
I casually placed my hands across my stomach, ready to kick back. It was at that moment that felt something, something that wasn’t supposed to be there.
It was hard and seemed to be shaped like a ball below my navel.
The moment changed from a chill session to a thorough self examination instantly. I asked my boyfriend at the time (now fiancé) to feel it. Maybe it was denial, but I needed to confirm it was actually there.
I said “we have to go to the ER!”
Now, Saratoga Springs is a beautiful but strange place for me (a black woman).
Sometimes it’s hard to tell if I’m being met with racism or genuine incompetence.
It is painfully clear sometimes, but our trip to the ER left me more confused than I was coming in.
Quick note on Saratoga: To be fair, it is a lovely place. It’s very charming and most people are very welcoming and kind. My experience of the place has definitely improved over the years.
As far as the ER experience, I was met with head scratches and the sense that their questions were irrelevant. They basically told me they had no idea and there was zero examination.
To add insult to injury, I received a bill for $500 for that visit.
Between the fact that I never noticed this mass before and the hospital’s cluelessness, my 5 alarm reaction quieted down to a sporadic siren over time.
About a year or two later, I developed symptoms like a constant pressure around my lower abdomen/pelvis, a strange sensation down my left leg and my cycles increased in intensity and frequency. My quality of life was officially compromised and it only got worse.
The intensifying cycles were especially troubling because like many black women, I’ve been anemic my whole life. Being iron deficient is something I don’t take lightly anymore, and I now supplement regularly.
It all came to a head one day in rehearsal in NYC.
I was preparing for a summer rooftop performance and I was slowly becoming more and more depleted. More than normal.
By the end of the rehearsal I was shaking uncontrollably, feeling drowsy and weak.
I went home immediately and found myself in bed for 2 days, completely at the mercy of whatever was wrong with me.
Ok, my body had my attention. I was scared!
That experience inspired me to tighten up my lifestyle. I was already plant based, but knew I could eat less vegan junk food, and more veggies.
Over the next 2 months, my lifestyle improved and my symptoms improved drastically.
I started trying all kinds of recommendations.
I took supplements I never heard of, I tried castor oil packs, new teas, anything I could find (within reason).
Hundreds and hundreds of dollars went to trying different remedies, and tinctures.
Adaptogens became a part of my life. Anything with a reputation for “balancing hormones” was adopted.
I felt better than I had in a long time, but the thing about my condition is it quietly forms over the course of some years. The things that set this into motion in my body and lead to creating the environment where these invaders could grow started years before that day in Saratoga Springs.
So yeah, I felt better than I had in a long time but when was the last time I truly felt like myself? I wasn’t so sure.
Still undiagnosed, I told my new doctor about the mass I discovered.
She told me to place a hot compress over it and keep an eye on it. She wrote it off initially, something about the body just going through changes.
Eventually she sent me to her (more experienced) colleague across the hall.
He sent me off with an order for an ultrasound.
So I had the ultrasound, which was it’s own mini movie. A Russian woman who barely uttered a word as if the parts of me undergoing this process were not mine.
Just another day at the office. I guess it’s fine, in the end I got what I was looking for.
Finally, a diagnosis.
Fibroids aka myomas or leiomyomas.
They tend to become symptomatic in Afro-Caribbean and African women at a higher rate, according to my research.
The ultrasound picked up on a few. The one attached on the outside being the one to watch the most.
The doctor wise enough to send me in for the examination wasn’t well versed in my particular issue, so I had to find a gynecologist I could trust.
I had another ultrasound about a year later, the dates are fuzzy. This new doctor seemed promising, his reviews online were great, but the energy irl was off.
He recommended surgery, but he seemed too eager. He also performed an unnecessary (I realized later) and painful biopsy. I was given a prescription to dilate my uterus in order to perform an endometrial biopsy aka a sample of the lining of my uterine lining to be sure it nothing was cancerous.
Absolutely one of the most painful things I’ve ever experienced in my life.
He also started to talk to me about freezing my eggs and described in graphic detail an instance where my uterus could explode if I tried to carry a child without removing the myomas.
I sat there across from him in a panic that I stuffed down to the point that it could only produce tears.
It was time to find a new doctor again.
The next doctor recommended birth control, which I absolutely have no interest in. It’s also quite possibly the worst recommendation for an ailment likely related to some hormonal imbalance that no one is sure of. I saw her once and that was one time too many.
The search continued.
I started to feel discouraged.
I could also feel that the largest one was growing.
Finally, I found myself at Mount Sinai earlier this year.
Unfortunately, while a lot of my symptoms improved, my condition hadn’t. The tumors showed no signs of shrinking, in fact, they had grown.
So much for the natural route.
I had an updated ultrasound, and about 5 myomas were detected.
My cycles became longer, my body was changing. It was as if I was 4-5 months pregnant by March.
I never felt like myself and every time I got dressed, it felt like I didn’t know how. Something I normally enjoyed also became a source of anxiety.
It felt like I was always in management mode. Managing my mindset, managing my hormones, managing my body, managing my emotions, managing my pain, managing my schedule around how this affected me from day to day.
No days off.
This experience changed me and I’m still wrapping my head around it.
The way it creeps into your life and takes a toll mentally, physically and emotionally is a silent battle so many women have fought and so many more will continue to fight.
This is why I chose to share this experience in parts. There are phases.
It’s too much for a blog post.
Sometimes our experience can feel minimized by people with good intentions. A casual statement like “oh it’s common”.
Yes, that’s true but why had I never heard of it until it was too late? Was there anything I could’ve done? How can something that disrupts a person’s life be so common and so rarely discussed?
So much is shrouded in mystery.
I will share everything I can because of the strength I found in the stories others are beginning to share.
You are not alone, and this is not your fault.
Your body is not betraying you, but it is telling us something that I hope we’ll be able to decode sooner than later.
I believe generations of silence around this epidemic has left us defenseless.
All we can do is move forward with what we know now.
I will write more about my experience soon.
Until then, be encouraged. 💞
*Please excuse any typos.