WhatIf Innovation Podcast Series
Being Me: Episode 1 — It’s Not Normal
By: Tessa Law, Mike Galbo, Jeremy Dawkins and Tina Ripperger
Being Me: Episode 1 — It’s Not Normal Podcast Transcript
We’re thrilled to introduce the first episode of the ?What If! Podcast, Being Me. The goal of this podcast is to showcase the power of insight to spark new perspectives and ideas.
Our healthcare innovators bring this episode on Endometriosis to you, as part of a series on disease states.
A disorder where the tissue that lines the uterus grows on other organs in the body, such as the ovaries, abdominal cavity, bladder, liver kidneys and even in rare cases the brain. Every month the menstrual cycle causes this tissue to swell and bleed, causing pain and a host of other physical symptoms
This is Endometriosis, a common disease with painful symptoms. Lisa, who was diagnosed at age 25, described her experience:
“It was very isolated pain but then it would radiate. And it would radiate down my back as well as down my legs. And it was intense; it was very, very intense pain. When it came on, it would come on extremely strong”
Lori, who also has endometriosis, described her bout with the disease:
“As a young girl, I had terrible menstrual cramps and periods and I bled very heavily, and it was probably a result of endometriosis that I guess was never diagnosed or looked into”
Lori started experiencing bad periods when she was 17 years old, but she wasn’t diagnosed with endometriosis until she was 35. That’s more than 15 years with chronic pain.
Lisa describes, “[The pain] would be so severe that I would have to take time off of work. So I realized that this is not normal, on a scale of 1 to 10 it was probably a 12.”
While an estimated 10–20% of women have this disease, about half of these women live with it undiagnosed. It’s no secret that it sounds really painful, so why aren’t these women speaking up?
For Lisa it was simple, “At first, I thought that this was part of the fact that everybody is very, very different and everybody feels things differently. I thought this was just how I was developing and something I had to live with.”
Lori had a similar experience: “ I just thought, oh you know, I had terrible periods. I never pursued anything and the doctor didn’t pursue anything.”
Here’s the challenge: when every woman is experiencing some kind of habitual monthly pain, how do you know yours is different? The truth is, most women don’t, until something else happens. For Lori, like many women, the disease was discovered after years struggling to get pregnant.
A disease that had silently plagued Lori for almost two decades was now the cause of her infertility. She had been trying to get pregnant for four years, but endometriosis had been there long before. She just didn’t know.
Dr. Elizabeth Cooney, an OBGYN based in Delaware, helped us unpack why women have a hard time speaking up about these issues.
“For some women,” she says ”it’s something they think they have to live with so they don’t seek care, or they seek treatment, and they are told they have to wait 3–6 months to see if the treatments work before they evaluate it.
Maybe from the start of their period, this is what they thought a period was, and they didn’t talk to anyone about it. Or maybe they thought they just couldn’t handle pain and this was normal. Not asking young women or women of any age if they have pain with their cycles, validates the idea that if no one is asking me about it then maybe it’s normal.”
So how do you go about diagnosing women with this disease when they aren’t going to their doctor complaining of symptoms?
From Dr. Cooney’s perspective, “It’s important to validate that [women] don’t have to go through this much pain”
As an OBGYN, Dr. Cooney feels the surprising challenge is that endometriosis manifests itself in unpredictable ways. For example some women can have a severe case, meaning they have a large buildup of tissue, but their pain is mild. Others can have horrible pain, yet they have a small buildup of tissue. As a result, “so many women go undiagnosed simply because they’ve been told that it’s related to their cycles,” says Dr. Cooney.
While we don’t yet know the solution to Endometriosis, the way in which the disease impacts so many lives certainly warrants further research and raises some provocative questions.
What if you had experienced chronic pain your whole life and were told that it’s normal, how would you know when to speak up?
What if we broke down barriers of communication and had a system to gauge pain on a normalized scale? Think about how this would affect not just endometriosis patients, but healthcare as a whole.
What if doctors and nurses could feel what your feeling, learning symptoms not through what you’re telling them but through what you’re actually experiencing, understanding what you’re feeling, even if you don’t?
What if we built a healthcare system with complete understanding and perfect diagnosis?
What if we continue to ask these questions…and got answers.
What if…
Understanding is just the beginning. To learn more about ?What If! Innovation and how we use the power of insight to unlock solutions, visit us online at whatifinnovation.com and follow us on Twitter @whatifglobal
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Special thanks to Lisa Alonzo, Lori Goldberg and Dr. Elizabeth Cooney
If you want to learn more about endometriosis, here are some resources that might help:
The Endometriosis Foundation of America
The sickest girl Lena Dunham opens up about her life with endometriosis
Credits: Intro music is Pamgaea by Kevin MacLeod (incompetech.com)
