Katie Joy Ussery is a self-described pro-life libertarian, and has quite the trainload of political experience behind her, including (but not limited to) being a former Young American for Liberty chapter president, volunteering for Ron and Rand Paul every four years from 2012 to 2016, and being a county/district/state delegate in 2012/2014/2016. She currently works as a patient services coordinator at a family medicine practice. Katie's passion for certain issues, especially her dedication to the endometriosis community, is what drew me to help share her story on my blog. It's thanks to her that I even know what endometriosis is and the struggles of those who suffer from it, away from public awareness. If she inspires you to learn more or to take action, check out the resources at the end of the interview.
- Descendant of Charlemagne and the Italian mob on one side of the family, and of Jesse and Frank James (the outlaws) on the other
- Was homeschooled K-12
- Has a huge extended family and is very close to them
- Been with the love her life for three years, who has been nursing and loving her through five surgeries during these years
Hobbies: Reading, thrifting and watching comedy with her boyfriend, playing with their kitties, spending time with family, singing in choirs, working on campaigns, re-watching Grey's Anatomy, working as a barista on weekends, buying everything Wonder Woman, and drinking coffee from her massive coffee mug collection
1. As an outspoken warrior against endometriosis, how would you describe the condition to people who don't know anything about it?
The easiest way to explain endometriosis is that it is a genetic disorder which creates growths which usually occur on the pelvic sidewalls and organs, but can also be found on the appendix, diaphragm, liver, spleen, lungs, heart, brain, lymph nodes, and sinuses. It can causes severe pelvic, back and hip pain, inflammation, internal damage, fatigue, digestive issues, abnormal bleeding, painful and irregular periods, and a wide array of other symptoms. It can start at any age, and there is no cure. The average amount of time between onset of symptoms and diagnosis is roughly seven-to-ten years, due to inadequate awareness, improper diagnosis, a lacking understanding of endometriosis in the general medical community, social stigmas surrounding female reproductive systems - including the dismissal of female pain in clinical settings - and the fact that it can only be diagnosed through surgery.
Endometriosis can steal away health, body image, emotional health, motherhood, hobbies, finances, jobs, careers, friends, social lives, and relationships before you even know its name. Roughly 1-in-10 women in the world currently fight endometriosis, and it's estimated that most of them are still undiagnosed.
|In the hospital during her last surgery|
2. What is your experience with endometriosis?
I began experiencing symptoms at 14, but everyone in my family also had undiagnosed reproductive disorders, so I was told that pain, cramps, and abnormal, heavy bleeding wasn't anything unusual. My symptoms became increasingly worse until I went to an OBGYN at 19. I was told I likely had endometriosis, but I was too young to treat (incredibly wrong). My symptoms progressed further to the point where I was constantly sick and in pain. I experienced heavy bleeding, clotting, cramping, severe pelvic, back, and hip pain, anemia, fainting, digestive issues, fatigue, nausea, and other symptoms. I was finally suspected nine at the age of 23.
I had my first laparoscopic endometriosis removal surgery in July of 2015, when I was finally diagnosed. I remember waking up from surgery, still groggy, and asking, "Do I have it?" I sobbed hysterically when I was told I did, because I was so relieved to finally have a name for it, to have my pain validated, and to stop searching for answers. I also sobbed because I knew I was being subjected to a lifetime of surgeries, treatment, appointments, needles, pain, and all the worry, fear, and heartache that comes with it. I, unfortunately, had undergone an ablation surgery, where the surgeon cauterizes the endometriosis growths, which causes scar tissue while not fully removing the growths. If any cell of the endometriosis is left, it will quickly grow back and the patient will quickly relapse.
The correct technique for removing endometriosis is excision, where the surgeon is able to remove all of the endometriosis growths and adhesions without leaving anything behind (as much as humanly possible). True excision surgery is the best and most effective treatment for endometriosis, and gives the patient the greatest chance at a healthy life moving forward. Excision surgery done at a proficient level, paired with the knowledge, experience, and compassion needed to battle this disease, is most often accessed through a endometriosis excision specialist. They are much closer to gynecologic oncologist than general OBGYNs, and usually have narrowed their focus to treating only endometriosis and reproductive disorders patients. These surgeons are few-and-far-between worldwide, and can be very difficult to access. Patients often need to wait for consults with specialists, travel long distances, put their life on hold, and pay thousands of dollars out-of-pocket for treatment, sometimes mortgaging their homes or even going bankrupt to pay for the surgeries.
Anyway, after I had an ablation with my first surgeon, during which I was diagnosed as Stage I (endometriosis is diagnosed in stages like cancer), the pain and symptoms all came back two- . I called my surgeon and told her I believed my endometriosis was back, and she basically told me I was crazy. I had my second surgery in January of 2016, only , in the Twin Cities with an endometriosis expert. During that surgery, I was diagnosed as Stage II, and the endometriosis had been found on more surfaces than in the previous surgery. I was "in remission" for eight months after that surgery, and then relapsed again in September of 2016. I was again told by my previous surgeon that it couldn't possibly have come back, and to try physical therapy. This time, I knew that I wanted to go to one of the best surgeons in the world and experience world-class, high quality true excision in order to end the revolving door of surgeries that many women find themselves in. I requested phone consults from three of the top endometriosis surgeons in the world, and created a surgery plan with one of the surgeons, based in Texas. This was in January of 2017.
During the year of 2017, I lost my job and insurance, ended up in the ER with severe right abdomen pain, was bedridden from the pain for several weeks, began working at a medical clinic, gained insurance, started pain management, received hip injections, turned 25, and experienced endometriosis increasingly affect my pudendal, sciatic, and sacral nerves, my digestive system, and even my ability to walk without limping due to growths later found in my right psoas muscle (hip muscle). I had to reschedule the surgeries and fundraise/earn enough money to pay the thousands of dollars out-of-pocket needed for the surgeries.
In late October, my boyfriend, parents, and I journeyed to Denton, TX, where I was lucky enough to undergo true excision surgery with one of the best endometriosis excision specialists in the world. Endometriosis and adhesions (scar tissue that can adheres organs together) was found on my pelvic sidewalls, uterus, ovaries, cervix, bladder, ureters, uterine vessels, rectum, and appendix. My appendix was also removed due to inflammation, and they estimated it was likely that had caused the severe abdomen pain I had endured for eight months since late February. I was extraordinarily lucky that it didn't rupture before the surgeries, and that I went to a surgery with someone who had enough foresight and experience to take a look at my appendix, and not trust previous MRI, CT, and ultrasound reports from previous physicians. Five days later, my surgeon went back in, removed adhesions binding together my uterus, ovaries, bladder, and rectum that had formed since the first surgery only five days earlier, and put down a barrier created from umbilical cord cells to prevent adhesions from forming again. As of writing this, I am now one-month-and-four-days post-op, and I haven't felt this good in almost ten years. I am so thrilled and thankful that I am finally in remission and moving towards increased health. I believe that mountains are put in front of you in this life to show to others that they can be moved, and that's exactly what I was able to do this fall. I am grateful and praying for the best in the years to come!
3. What are some government, scientific, or other barriers do you believe are in place that halt the progress of better treatment of yours and others' endometriosis?
One of the largest deterrents for endometriosis patients to access excision surgery is the cost. The insurance industry currently believes that ablation of endometriosis is the standard of care, and doesn't have a difference in ICD-10 coding for excision of endometriosis, versus ablation. This means that true excision specialists, if they bill the insurance company, are only going to be reimbursed at roughly 1/5 the cost, if that, of excision. Excision surgeries are generally much longer, more expensive to perform, and require much more skill. This means that most endometriosis specialists don't take or participate in insurance; they charge a flat rate cash price for their services. This is not due to greed or self-interest, but necessity; I know of several endometriosis clinics which were on the brink of bankruptcy or were in-the-red before they cut ties with insurance. This creates a huge problem for patients who aren't able to raise or access thousands of dollars for effective treatment, not to mention the cost and time needed for traveling long distances to get to said specialists. This problem stems from the medical community being incredibly unaware of/ignorant to endometriosis.
I've gone to family doctors and had nurses who have never heard of endometriosis. I've been to OBGYNs who had no idea what to do with me, or that believed the most outdated and terrible myths about endometriosis, such as "Hysterectomies cure endometriosis" (it creates its own estrogen and can be found in pre-puberty children, the pelvic cavity of dissected fetuses, women who have been on long-term continuous birth control [myself], menopausal women, and some rare cases of men), having a baby cures endometriosis (it doesn't), and birth control can stop or reverse endometriosis (it can't). I've had prescription drugs pushed on me for years that have been proven to be ineffective and can cause catastrophic side effects, and have been scolded by physicians when I won't take it. I've been told more times than I can count to get pregnant, while either very sick, financially unstable, unmarried, very young, in college, thousands of miles away from family, managing a Congressional campaign, or combinations of those descriptors. It doesn't matter if I expressly state I'm not yet ready for motherhood; they still think it's an easier answer to my severe pain and symptoms than actually figuring out how to treat my illness. What disease in the world do doctors decide it's a good idea to treat it with motherhood? Can you imagine if a man had a disease in which the suggested treatment was fatherhood?
The American College of Obstetrics and Gynecology (ACOG) has also ignored the petitions of the endometriosis community to get involved in any meaningful manner or even acknowledge that there is a dire lack of awareness, information, or proper treatment for endometriosis patients. There aren't even endometriosis specialists or even those who can manage their care properly in some states. Most OBGYNs put endometriosis patients on birth control and call it good; they never know that there is a better treatment option out there, because the OBGYNs themselves don't understand why or how the treatment is superior, they don't intimately understand how endometriosis grows, how it spreads, how it's treated, how it's suppressed, or even what hormones are necessarily fueling it. Advances are happening every day, though, and the surgeons who are passionate and knowledgeable are constantly upgrading and modifying their protocols to give their patients cutting-edge, effective care.
4. You have written publicly about your use of kratom to provide some relief. How have you used the kratom, and what are your feelings about drug warriors trying to make it in inaccessible to both recreational and medical users?
I used kratom for pain relief for roughly six months. When I relapsed again in September of 2016, one of my dear endo sisters from Iowa took a risk and mailed me a sample of kratom. After I took the kratom orally in a drink, I was pain free for several hours, and I couldn't even believe it. I almost daily used kratom from that point on. It was a tremendous tool in my daily life; it allowed me to continue working, to have a bit of energy to do something after I came home from work. It decreased my pain levels and gave me energy.
It is composed of crushed leaves from the Mitragyna speciosa plant, mostly grown in Asia. It can be ordered online through a reputable vendor, and is growing in popularity around the world for those looking to treat chronic pain, fatigue, anxiety, depression, PTSD, addiction, and many other problems. It has an alkaloid base and works on the opioid receptors in the brain, although it is not actually an opioid. Opponents of kratom like to tout the 15 deaths attributed to kratom, but in all of those deaths, there were multiple substances involved in the toxicology reports of the deceased. There has, to my knowledge, never been a death attributed only to kratom. Besides that, how many Americans take medications every day that could potentially cause death, but have been deemed worth the risk for the calculated benefit?
I am currently a pain management patient and take multiple potentially dangerous medications to manage my pain and symptoms, but my physicians have deemed the side effects or potential for harm worth it due to the proposed benefit. We should trust patients to make the same decisions for themselves. Having been part of the kratom community for over a year now, I can tell you that these are not patients looking to get high or abuse anything. They are passionate, intelligent, loving, humorous people who are trying to make it through the day without pain, who are trying to manage their symptoms in a more holistic, healthy way than prescription medications, who are trying to beat an addiction. These are people who are able to work, play, dream, run, pursue, thrive, and even live due to this plant. There are side effects with it as with just about anything, but the benefits are simply incredible. I unfortunately had issues digesting the amount of kratom necessary for it to make enough of an impact for me to remain able to continue working/walking etc., but it was so helpful during the time I took it and I'm very thankful it exists. I believe it should be fully legal in all states.
5. What are your opinions on the greater War on Drugs, especially related to healthcare?
I don't believe that prohibition works in most contexts. Look at the alcohol Prohibition of the '20s; alcohol was still accessible with some effort, and it created an unregulated black market which also produced a great deal of crime. I am against the War on Drugs, as I believe that it only violates civil liberties and medical liberties, creates violence against the citizenry, contributes to the further militarization of the police force, wracks up cost for all municipalities, state and countries who are pursuing it, increases the prison population, and ultimately makes addiction more difficult to defeat. I believe that drug addicts should be treated as patients, not as criminals, and they shouldn't have to fear retribution for seeking help in order to save their lives. Well-meaning advocates against drug abuse believe the War on Drugs is creating the sought-after effects, but real world data shows quite the contrary. I am also a huge advocate of the benefits of marijuana, CBD, and hemp, and believe that citizens should be able to self-medicate without being incarcerated for a plant, while we're allowing violent criminals to get off early on good behavior, or for instance, serving three months of their six month sentence for sexual assault, like Brock Turner.
I'm a pro-life activist; I believe that life begins at conception, that every life has intrinsic, sacred value, and should be protected. However, the defense of life for me doesn't end with the pro-life defense. I believe that being consistently pro-life also means being anti-death penalty, anti-preemptive war, and pro-medical rights (allowing patients to access the care they deem necessary, giving them the right to try experimental or unproven drugs).
7. How do you utilize social media, on-the-ground organizing, and other actions to to make a difference, whether is to change minds of individuals or influence the decisions of politicians?
To be honest, my efforts have sometimes been effective, and other times have not been. The strategy very much depends on the situation and presumed goal. For instance, in the endometriosis community, social media hasn't been incredibly effective in changing the insurance industry's standards, illuminating the medical community, or petitioning ACOG to actually represent us. However, what it does incredibly well is inform, connect, and support patients, offer them research tools and communities of women with similar experiences and struggles, and help them find the answers they're looking for. It crosses state and even country lines, and creates long-lasting friendship and sisterhoods that can pull you through the darkest of times fighting a disease that can be soul-crushing.
The #1 cause of death in endometriosis patients is suicide, because the lack of awareness or understanding, the monumental and widespread way it can impact your life, and the difficulty or impossibility of accessing proper treatment, or even knowing it exists, can create a darkness that seems impossible to escape. But there is always hope, and my story proves that. As long as I'm alive, my story continues, and so does my fight. There is always hope, as long as we keep fighting this together, and standing together with our fellow sisters. I have always been outspoken about my fight with endometriosis, whether it be in person, or on social media platforms, because I have helped diagnose roughly 8-10 women through them just being exposed to my story.
If someone can hear my symptoms or see a bit of my experience and realize that it sounds all too familiar and receive the treatment they need, it is worth every bit of whatever shaming, awkwardness, rudeness, or disgust I may receive from others. I also strive to help educate everyone around me, so that they next time their girlfriend, coworker, daughter, niece, or whoever in their life is diagnosed with endometriosis, they will have heard of it, and that woman will receive more understanding in her battle, and hopefully feel less alone. I also hope that anyone out there who sees my posts who might also be experiencing chronic pain would know that another person is on their side and understands what they're going through. I'm also working on two separate projects to help women reach treatment more quickly, but they are both in the infant stages and can't share the details just yet. :) Stay tuned to the endometriosis community for more incredible things ahead.
Update upon publishing: Katie reports that roughly 85-90% of her pain is gone since her surgeries in October!
Follow Katie Joy Ussery!
The Unstoppable Katie Joy
Endometriosis Foundation of America
Endometriosis Research Center
Botanical Education Alliance
Endo Fight Club
American Kratom Association