Share Your Story: Emily Ullrich
In hindsight, my chronic pain began at around eleven years old, when I started menstruating. My periods were so extremely painful that I would literally pass out from the pain. My mother had painful periods, and so my agony was chalked up to genes, and as I got older, I learned a few tricks to help the pain. As a teenager, I had regular pelvic pain and urinary tract infections, and by the time I was in college, I started seeking answers for my pain. I met endless doctors who shrugged me off with comments like, “You’re too young to have serious pain, I think you should just take Ibuprofen and use a heating pad,” and “It’s normal for women to have pain during their periods.” I continued to seek help over the next two decades, and finally, in my early thirties, I was given laproscopic surgery, and it was determined that I had Endometriosis. I also had a cysto-hydro-distention procedure, which concluded that I had Interstitial Cystitis. Both of these diagnosees, at the time, were the end of my treatment.
In 2011, I started a non-profit, and moved to Nairobi, Kenya alone, to teach filmmaking in the slums to college aged youth. I suffered four bouts of Malaria while living in the slums, and one stint with Typhoid Fever. Since then, my health has continued to decline. At one point, I was having severe flank pain, nausea, and fevers. None of the Kenyan “doctors” that I could afford could tell me what was wrong. So, I was forced to go back to the US, and chose to live with my mother while I regrouped and recouped.
The first morning back on American soil, I awoke in agonizing pain, unlike anything I’d ever felt. So, my mother took me to her doctor. I was diagnosed with kidney stones and a kidney infection, given pain meds and antibiotics, and sent home. The doctor felt I should be hospitalized, but I had no insurance, so he tried to help me cope at home.
The pain never really went away. I continued to see the same doctor, and he continued to write me pain medication, having decided my pain was from Endometriosis. I ended up in the ER too frequently because the pain was unbearable at times, even with medication. Finally, after two years of this, I was referred to a pelvic pain specialist. He worked with me, trying physical therapy and different hormone treatments. The first of which was the Mirena IUD. Everyone is different, and I’ve heard that it works wonders for some, but for me it was pure torture. I bled heavily for NINE MONTHS, every day, and had horrible cramps. Finally, he took it out.
In the meantime, I developed chronic migraines, and was even hospitalized once for a week, when one wouldn’t go away. I was also diagnosed with Fibromyalgia. Kentucky passed legislature to limit pain medication, and suddenly my doctor would not prescribe pain medicine for me anymore, and every doctor and hospital I encountered accused me of drug seeking. This included three ER’s I went to when I had again developed a kidney infection. Finally, the fourth ER took me seriously, and admitted me with severe pyelonephritis. The doctor said, “Why did you let it get this bad? Why didn’t you come in earlier?” I told him I had, but no one even tested me, they just saw that I had taken pain meds regularly, and dismissed me as a drug seeker. Because my treatment was so delayed, I developed sepsis, and was extremely ill.
At this time, I became pregnant. With terrible pelvic pain one night, I went to the hospital, where they told me the pregnancy was ectopic, and they would have to remove it to save my life. When I got out of surgery, they told me that the fetus was too attached, and they had to remove my entire right Fallopian tube. About a week later, I was still in pain, and still experiencing morning sickness. I returned to the hospital, and was told that I was pregnant. The fetus had not yet dropped, and what they thought was the fetus was actually Endometrial tissue. About a week later, I miscarried. The doctor who performed the surgery was insolent and again accused me of drug seeking!
I finally got a referral to a pain clinic. I was started on a fairly low dose of a combination of meds, and told they would be adjusted as needed, and that if I was ever in too much pain, I could see a doctor, and have the dosage increased. The stability of marginal pain control was a relief, both physically and mentally. But, then I began to develop other conditions. I started having gallbladder attacks, and finally it was removed. I was diagnosed with bone-on-bone osteoarthritis and torn meniscus in both knees. I also continued to have pain where my gallbladder once was.
I made daily attempts to schedule an appointment with a doctor at my pain clinic, but they told me I could not have an appointment for three months. Eventually, the pain from my constant menstruation, Interstitial Cystitis, Fibromyalgia, Osteoarthritis, and mysterious upper abdominal pain got so excruciating, that my blood pressure was skyrocketing. I ended up hospitalized on my 39th birthday for “Hypertensive Malignancy Due to Uncontrolled Pain.” The hospital decided after three days of torture, that they did not want to treat me anymore, and sent me home, without any additional pain control.
I was having bouts of pain so badly that I feared a heart attack or stroke. So, I made the un-wise decision to take some additional pain medication. I was called in for a pill count, and told I would no longer be treated with narcotics. I explained my circumstances to them, and how I had been calling EVERY day to get in with a doctor, and that according to their contract, TWO “inappropriate pill counts” would put me on a non-narcotic schedule, but they didn’t change their minds. I was left with NO TREATMENT.
I had surgery on one of my knees, and the doctor told me not to try to get into another pain clinic for three months, that he would manage my pain. He put me on a dosage which was less than one third of the medication I was getting before my new issues. I tried interventional pain, but my medication allergies left my options limited, and I found myself in worse pain after the procedures. I used (and still use) a TENS machine, yoga, and breathing/meditation exercises. But, I am not Ghandi, and this pain was beyond anything I could handle. I was desperate.
I called Sheila Purcell, a known activist in Kentucky’s pain community (and who is also a Delegate for Power of Pain). She advised me about the laws that were contributing to my inability to get proper treatment. An activist was born! I also decided that in the meantime, I would find help anywhere I could, and began travelling four hours each way to another state, to a pain doctor.
I had a red, hot, painful knee still, three months after my surgery. The doctor told me I would need a total knee replacement on both knees. I sought a second opinion. The second doctor took one look at my knee, and by the look on his face, I could tell it wasn’t good. He hospitalized me for testing, when I told him I couldn’t take the pain anymore. I was diagnosed with CRPS, and sent home.
Then, my upper right quadrant abdominal pain began to flare out of control. I was hospitalized with extremely elevated liver enzymes. They gave me an ERCP with Sphincterotomy to cure what they diagnosed as Sphincter of Oddi Dysfunction. I never felt any better.
The pain clinic I was driving four hours each way to was shut down by the DEA and FBI. I was again without any care. Luckily, I had developed a great relationship with a doctor there (who left before they were shut down, because he felt it wasn’t being run professionally). When I let him know about my situation, he made room for me at his new (extremely professional) clinic, the NEXT DAY.
I am so grateful that I have this doctor, I don’t know what I would do without him. I’m also glad to be a part of multiple pain advocacy groups, including being a Delegate with the Power of Pain Foundation. These things have kept me going. Currently, one of Sheila Purcell’s advocacy groups and I are petitioning the Kentucky House of Representatives and other legislators, to amend this bill, which is devastating the lives of thousands of pain patients. I still drive four hours each way to see my doctor, but he is well worth it. Also, like many other Kentuckians, I have no choice. In fact, my primary doctor told me that I should “Move to another state. With all of your conditions, you will never get the care you need in Kentucky.” I am now a patient advocate and board member for my doctor’s growing group of pain clinics, one of which will be in Kentucky. I hope to make a difference through my writing and activism, to raise awareness and help eliminate the stigma pain patients endure, and to change laws and medical policies which make our quality of life nearly non-existent.