By Emily Ullrich, Guest Columnist
If you haven't seen it yet, you've likely heard the buzz about The Bleeding Edge on Netflix. This documentary should be seen by every adult in America, not just chronically ill or chronic pain patients.
The Bleeding Edge gives insight and affirmation to those of us who have dealt with the medical system a little too much and demonstrates how important self-advocacy is. If you haven't seen it yet, don't let what I'm about to tell you deter you. I've seen it twice now. The first time I watched it, I had a full-on panic attack because it reminded me of the infuriating ordeal I went through dealing with the American medical system.
I wanted to watch the film again, hoping I would be able to watch it more objectively. I made it through the second time without a panic attack, but I was still yelling at the screen.
The film covers an array of medical device errors and malfunctions. But more importantly, it also delves into the mistakes and oversights that the FDA, CDC, American Medical Association and others have made (and continue to make) at the expense of our health because it's more lucrative to make us sick than it is to ensure our safety.
One of the main topics in The Bleeding Edge is the autoimmune disorders that many women developed after the implantation of the Essure birth control device. I was especially stricken by this story.
My first experience with chronic pain was pelvic pain, due in part to endometriosis. I started having my periods when I was 11 years old, and by age 12 was literally passing out because of the severe pain I had when menstruating. I saw doctor after doctor, and every one of them told me the same three things:
“This is normal.”
“At least part, if not all of this, is psychological.”
“Take ibuprofen and a hot bath, and you'll be fine.”
Of course, they were all wrong.
By age 19, I went to probably my twelfth doctor. She decided, in her infinite and culturally superior attitude, that since I had two sexual partners in my lifetime that I must be promiscuous. And if I continued this reckless behavior, she would not be able treat me and would be forced to tell my parents. When I told her I didn't need to be judged or lectured, she clucked her tongue and shook her head, as though I was a lost cause.
Many years and irresponsible, uncaring and uninformed doctors later, at age 31, I went to a doctor who told me I probably had endometriosis and performed a laparoscopic procedure to confirm this diagnosis. The procedure was also supposed to remove it and I was supposed to feel better. It didn't.
As I aged, it got worse. And as I moved around the country, I had to go through the degrading and exasperating experience of finding a doctor who believed me and believed in endometriosis. Many OB/GYN's and MD's still do not. Even now, I see doctors on occasion who refer to it as a “garbage pail diagnosis.”
The Mirena IUD
At age 36, I was finally referred to a pelvic pain specialist. He believed in my pain and suffering and wanted to help. I cried because he was so nice.
After a fourth endometrial ablation surgery, he suggested the Mirena IUD as a long-term solution to my problem. He said it would not only prevent pregnancy but would be effective in reducing or eliminating my periods. As I lay back to have the IUD inserted, he assured me that it would not be painful that I would merely feel a “slight pinch.”
I never felt ANYTHING as excruciatingly painful. The doctor mistakenly punctured the fundus of my uterus. So, he casually penetrated me again with the same invasive tools, pulled the IUD out, opened a new one and attempted to place it. My uterus simply spat it back out at him. He said, laughing, “Your body doesn't seem to like this! Wanna try it again?”
I should have listened to my body and said no. But he tried again and finally placed it. For the next nine months. I bled profusely every day and the pain was worse than ever. I called and visited the doctor numerous times throughout these months, and every time he assured me the bleeding would stop and I should be patient.
Finally, I marched into an appointment and demanded he remove it. He did, and although I had pain for the next few days, it finally got a little better.
My point in all of this is that I now have about 15 chronic pain conditions. And with each one, I have a similar horror story. I feel a connection to the women who had the Essure device and who later developed autoimmune illnesses because of it. I will never know if any of my ongoing list of health problems stemmed from the Mirena, but I do know that after my bad experience with it and a few other attempted medical devices, my body doesn't respond well to foreign objects.
We are all different chronic pain snowflakes, if you will, and different treatments work for different people. However, as one goes through the process of repetitive ER visits, hospital admissions and doctor's appointments, we get to know what we can and cannot tolerate pretty well.
The pain patients' mantra of “Be Your Own Best Advocate” could not be hammered home better than it was watching The Bleeding Edge. The film struck a deep chord within me about the irresponsibility of our government, medical companies and doctors, as well as their willingness to suspend disbelief if it is easier and more financially convenient, even if it's at the cost of people's lives.
It is very much like the movement to stop the use of opioids, a proven and mostly safe class of pain medication, while encouraging the use of under-tested drugs with bad side effects that are often prescribed off label to treat conditions they were never intended for. It doesn't matter anymore if the patient has a better life or not. It only matters that the medical system drains our wallets and souls, while selling theirs.
Still, after all of this, we have to fight. We have to because no one else is going to do it for us. We have to do our own research and educate ourselves about medical devices and treatments.
As The Bleeding Edge demonstrates, when you can buy stock in healthcare companies, when government became controlled by corporations, and when doctors get paid for using and recommending their products, we lost the ability to trust them.
Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis, Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, PTSD, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.