Loudspeaker Letters: My Battle With Fibroids

In this week’s Loudspeaker Letter, Nyssa CEO and co-founder Eden congratulates her younger self on her commitment to never giving up on finding help for fibroids. She walks moment by moment down the winding road to self-preservation and along the way embraces her knowledge of each non-answer as not being fine.

To my younger self,

I’m hoping you read this in triumph. After years of pain and discomfort, heavy periods, abdominal swelling and spotting, countless visits to doctors who peered inside through the cold metal claw, saying ‘looks fine’ as if we—the uterus holder—knew what determined ‘fine’. 

You weren't fine. Searing pain and overdrafting your checking account to pay for appointments that took ages to book after months of knowing something wasn’t right—that isn’t fine. When you ask for more—a diagnosis at best, more than a glance at worst—and you are told instead that you could be seen again in one year, for your monthly visit.

That isn’t fine. “Are you having unprotected sex?” “Do you have multiple partners?” “Okay, see you next year.” And the next years continued in this way...peer inside, punch a card, you are fine...see you again next year. None of that is fine.

Congratulations on finally landing yourselves into an MD chair that offered an ultrasound. So, yes, you had to wait a decade and it was only when you were pregnant. The MD reminded you that you are not the patient, your baby is.

At least you were seen—at least they found that fibroid that measured the size of grapefruit. That caused the tech to say, “Goodness, wasn't that hurting you?” That caused the MD to say, “That’s surprising, you have a fibroid.” But now you have made it!

Finally to a surgery, where they will shave that damn thing down. You of course will ask, how do I prevent them from coming again? And the answer will not stun you: “We don’t know. We don't have a lot of research on what causes fibroids.”

But as you get rolled into the surgical room, surrounded by residents that you have been told just minutes before need to see such a large mass and so will also be peering into you, you will announce to everyone: “Don't worry guys, I made an underwear for this” and then promptly pass out. Good job! It’s gone.

You are lighter, more regular, more free after it is removed. You may not know when it will come back, your words of discomfort may not have been ever really been listened to, and you may have a hospital bill that takes a year to pay off, but you won this battle for the right to control your pain, for the opportunity to advocate for yourself, and for the ability to remove this interloper.

You are one of the few that has had the ability to get to a place of demanding answers—or at least relief—and if you hadn’t been in the right spot at the right time, you would be still carrying around that fruit salad and clutching your torso throughout the month.

But don’t rest on your haunches. Don’t take your time getting back on the offensive. There are so many more battles ahead.

Love,
Eden

 artwork: nancy spero

About Loudspeaker Letters 

So often, it's hard to know what to say when someone we care about is navigating a challenging time related to physical and emotional health.

We created this series for two reasons: to help foster empathy and communication (because by hearing words of comfort, you may be inspired to share some or all of them with people in your own life) and to create a well of communal knowledge on resiliency.

Through this resource, we are able to acknowledge how far we’ve come as individuals and weave a thread of lived experience through one another. These are the words of wisdom we’d send our past selves—long before we knew what was coming.

If you would like to submit your own Loudspeaker Letter for consideration, please e-mail rachel@nyssacare.com and we will send you a short brief. Thank you for sharing your stories with our lovely community.