Here is the full transcript of documentary filmmaker Shannon Cohn’s TEDx Talk: The Most Common Disease You’ve Never Heard Of at TEDxUniversityofMississippi conference.
TRANSCRIPT:
Thanks, guys. Have a look around the room and count ten women, or think about ten women you know: your mother, your daughter, your sister, your friends. What if I told you that it’s almost certain that at least one of these women has a disease: a disease that no one knows the cause or the cure of. It’s a disease that takes an average of eight doctors, ten years to diagnose.
In the US alone, this disease puts a burden on society of an estimated $119 billion annually, in lost wages, lost productivity, and associated medical costs. It’s a disease that directly or indirectly affects you.
So what’s this disease? Endometriosis. Endo what? Exactly! The dictionary definition of endometriosis is when tissues similar to the uterine lining grows outside the uterus in other parts of the body. This can cause pain, organ dysfunction, and internal bleeding, and scarring. The reality of endometriosis is so much more than that.
It’s arguably the most common devastating disease on the planet that most people have never heard of. If you have heard of it, odds are you don’t really know. Let me tell you a story. Growing up, I was a happy, healthy kid. I made good grades, I was an athlete, I was raised primarily by my father, and I didn’t give him much trouble. However almost overnight, when I was a teenager, everything changed. At 16, I was suddenly sidelined each month by terrible pain, when I started my period.
Yes, I said period. No one freak out yet! This pain, it wasn’t like, ‘take an ibuprofen, lie down, you’ll rest, you’ll feel better’ type of pain.
First, let me just say that I was well aware of the many ways that a 16 year old could get attention, and complaining about pain for my girl parts; it wasn’t one of them. So, what could I do? I managed as best as I could. I loaded up on painkillers for a few days each month, and I continued on. I scheduled exams and work around when I thought my symptoms would be worse. Imagine a full course load or a demanding full time job when some days, you’re actually in so much pain, and you can’t stand up straight.
Years past, and I developed more symptoms that I thought were unrelated: GI symptoms like nausea, bloating, fatigue, migraines. I saw 17 doctors, world-renowned specialists at the best hospitals, and they ordered a constant battery of tests, of course: blood work, MRIs, CAT scans, colonoscopies, endoscopies, you name the test, it’s likely I had it. And everything came back normal. Seriously, it was pretty ridiculous. Isn’t this the image that we have in our mind of what a doctor’s visit should be like: a kind, caring doctor who’s there for us, and we can depend on him-her completely? While this may be the case with things like the common cold, evidence suggests that when things are less clear-cut, and especially if they involve women’s health, it gets complicated quickly.
According to a recent study published in “The Journal of Law, Medicine and Ethics,” while men wait an average of 49 minutes in an ER to receive painkillers for abdominal pain, women wait an average of 65 minutes for the same thing. We’re talking about almost 20 minute average across the board. And, more often than not, women are offered sedatives first for the exact same symptoms. This isn’t new information from a woman with endometriosis; we are regularly told that we’re overreacting, or hypochondriacs, drug seekers, or the dreaded “hysterical.” Let’s talk about this idea for a moment: the “hysterical female.”
Hysteria was the first mental disorder attributed to women and only women. In 1900 BC, ancient Egyptians attributed hysteria to a “wandering womb.” Yes. Those silly wombs always running around causing problems Since then, this idea of “female hysteria” has persisted, and it’s not hard to see how gender bias may play a role in medicine.
From an early age we’re taught certain social codes: be polite, ask nicely, wait your turn. We’re taught to suppress our anger and apologize for our tears. So, it’s not hard to see how we may fail to push back sometimes against a doctor who’s dismissing us. In fact, according to a study by the Yale School of Public Health, young women sometimes delay potentially life-saving treatments for heart attacks because they’re worried about being told they’re overreacting. I myself have been in an ER doubled over in pain, yet, still tempered my language, emotions in case I seemed melodramatic.
My own countless march through doctors offices continued until I was in film school at NYU. I went to a gynecologist near campus for a check-up. I went in and what, by this time was a rehearsed monotone, listed my symptoms, and then, an amazing thing happened. The doctor looked at me and said, “I think you have endometriosis, and we need to do surgery.” 13 years, countless doctors’ offices, countless tests, and large amounts of money later, it’s the first time I’ve heard the word.
It’s outrageous, isn’t it? There are many reasons why the average delay to diagnosis is ten years. One of those reasons is that this disease is highly individual; different women have different symptoms, whereas one woman may have painful periods, another might have GI symptoms, or urinary symptoms, or autoimmune symptoms, or maybe a combination of all of those. The problem is that most doctors don’t know this. Of course, it’s not entirely their fault. Most doctors are good, well-meaning people trying to do a good job.
The problem is what they’re taught in medical school is woefully outdated, and they practice within a medical system that is ill-equipped to deal with a disease that is highly individual, complicated, and involves different specialties, specialties that don’t traditionally communicate with one another. So, like many women I was shuffled around from doctor’s office to doctor’s office, from specialist to specialist without anyone actually putting the pieces together. So, the doctor did operate, and what should’ve been a one-hour outpatient surgery turned into an eight-hour surgery and week long hospital stay. I had stage four endometriosis. The disease had infiltrated my bowel and fused it to my left ovary and my uterus.
None of this showed up on imaging, none of it shows up on blood work. So, I had the surgery, and I was as good as new. I was cured, right? Not so fast! With endometriosis, there are two vortexes that a woman has to go through. The first is this long delay to diagnosis, the second is finding effective treatment. For example, let’s consider endometriosis surgery; imagine an iceberg.
Imagine this iceberg is endometriosis. There are two ways that a doctor can treat it: can cut it out, or burn what they see. The vast majority of the 52,000 gynecologists in the Unites States burn the surface or burn what they can see. That’s called ablation surgery. Only a small handful actually cut out the disease, which is called “excision surgery.” Right away, you can see the problem with option one, right? If you burn only what you can see, you leave potentially 90% of the disease behind. It’s no small wonder that repeated surgery for endometriosis is a fact of life. I, myself, have had three surgeries and more maybe in my future. Many women have more than that; seven to ten isn’t uncommon.
You may be asking, “Isn’t there some type of drug for this?” Yes, doctors do prescribe a wide variety of drugs, from anti-inflammatories and pain killers to birth control pills to more aggressive hormone manipulating drugs. But the problem with all of these is first, they can cause you know, a wide array of pretty awful side effects, and secondly, none of them actually treat the disease. They only mask the symptoms.
So, we have a lot of questions about this disease, not a lot of answers, but what do we know? We know that the endocrine and the immune systems are involved. We know that if your mother or your sister has the disease, you have an increased risk. We know that environmental toxins may play a role. We know that 50% of all unexplained infertility cases and half of the 600,000 hysterectomies performed in the United States each year are due to endometriosis.
There’s a really important side note there; a lot of these hysterectomies for endometriosis are completely unwarranted. Hysterectomy is not a cure for endometriosis. So, a disease that affects an estimated one in ten reproductive age girls and women, that’s an estimated 176 million people on the planet. If all of the people who had endometriosis formed their own country, it would be the eighth largest, larger than Japan, Mexico, even Russia. Yet we don’t really have answers, which begs the question: Why? Why don’t we have answers? Why don’t we have better treatments with less side effects? Why hasn’t everyone heard about this disease? The answer to all of those questions lies in a perfect, awful storm of lack of awareness, gender bias, uninformed doctors, fragmented care, and the undue influence of commercial interests on our healthcare system.
A perfect, awful storm even more volatile, when we’re talking about something traditionally taboo in society. Menstruation, periods, cramps. Below the waist issues are the last great women’s health taboo. What if I told you there are 5,000 euphemisms for the word “menstruation” 5,000 words, that mean exactly the same thing, yet we’re more comfortable saying: “Aunt Flo,” “the curse,” “shark week,” “on the rag,” “time of the month.” You get the idea.
The problem with all of this is that if we don’t feel comfortable talking openly about our bodies, our periods, we won’t know if something is wrong. Talking about a problem is the first step to changing it. After all, isn’t something wrong in society when we still see blue liquid in commercials? For those of you who were asleep in health class, that is not accurate. We all have a responsibility here to be aware of the issues, the inaccuracies, the biases.
And ladies, it is especially on us, to be aware and to break the vicious cycle of misinformation, unwittingly passed down for generations by our mothers or grandmothers that “painful periods are normal,” and “part of being a woman,” and we, just, you know need to deal with it like they did. When it comes to your health, you have to be your own advocate; you have to be proactive, this is true for any disease, but especially true for a disease that is so incredibly misunderstood.
If you remember nothing else from this talk, I hope you remember this: if you have a friend or someone you love having these symptoms, don’t dismiss them; believe them, support them, and help them find answers. If you are having these symptoms, and no one is listening, but you know something is wrong, don’t stop pushing. You know your own body, be brave, be persistent, be focused, and you can find the answers that you need.
I have two young daughters, who are five and nine years old. They are happy and healthy, yet they have a seven times increased risk of having this disease. I’m walking the debilitating path that they likely have in their future. Yet, it’s a path that can be changed for the better by you, by joining together, standing up, and speaking up openly about our bodies, our periods, our pain, our symptoms. We can all work toward a day where my daughters and your daughters and countless others can have a different healthier future.
Thank you.
Related Posts
- Dr. Stacy Sims: How Women Should Eat & Exercise for Health – Mel Robbins Podcast (Transcript)
- Dr. Annette Bosworth on The Diary Of A CEO Podcast (Transcript)
- Transcript: Yoga, Stroke Among Youth, Gym Myths, Brain Health & Diabetes – Dr. (Col) Joy Dev Mukherji
- Dr. Daniel Amen on The Tucker Carlson Show (Transcript)
- Sleep Scientist Dr Matthew Walker on DOAC Podcast (Transcript)