I have always been a very healthy person who gets sick about once every three years. As a writer, author, and actor, I always worked in the service industry while between writing gigs in order to make ends meet. I believe that being around germs my whole life has built up my immune system to the point where I don’t worry about illnesses like Covid or even the common cold. I never get sick!
I’ve also always eaten exceptionally healthy, been big into exercise as well as mental health practices like therapy and meditation. Though I am not perfect, I have always valued my health and done everything that I could to ensure it was maintained. It is important to me and something I do not take for granted.
But with my endometriosis I have felt that nothing is in my control. This disease, which has been debilitating to my health, career, and most of all, physical body has taught me to trust in the good of the universe. I have no power over how it effects my insides, and because doctors cannot see the disease without laparoscopic surgery. Therefore, my pain has been unbelievably challenging to diagnose. May my story empower readers to take control over their health and speak up when they do not feel heard. I have had to muster courage that I did not know I had, and yet, after almost one year of suffering, things are looking up. Here we go!
A few weeks after getting my second jab of the Covid-19 vaccine, I started to feel its tremendous side effects. Immediately, my monthly menstrual cycle went away for almost nine months, which was alarming in and of itself. At night, I would also wake up in a pile of sweat and feel very dehydrated in the morning. I was having hot flashes similar to what menopausal women go through at age 34. It was crazy. I also had very bad mood swings, anxiety, and bouts of depression, which were unusual even for an emotionally charged person like myself. I felt scared, lost, and confused and really did not feel good about my lack of a period. I had never been on birth control for this very reason: it is a natural process to get your monthly period and I never wanted to take it away. I had no idea why all of this was happening.
I started going to doctors with my crappy insurance where I was mostly paying physicians out of pocket for what felt like nothing. They would send me away and say, “Sorry, I don’t know what is wrong with you” or they would do bloodwork and poke and prod me and say, “Everything looks good! You’re fine.” I also think because my bloodwork came out fine and I looked well on the outside, they didn’t take me seriously. Some would even say, “Your skin is glowing,” as though one’s complexion could dictate how they felt on the inside. Just because I wasn’t losing my hair like people do when they go through chemo, they didn’t seem to believe me. Often, the doctors would just shrug, say they didn’t know what was wrong with me, and send me on my way. That is the American medical system for you: Uncaring, unknowledgeable, and not at all empathetic. Out the door I would go to return home to my apartment and cry on my couch.
About a few weeks after making a big move to Asheville, North Carolina, in 2021 I started experiencing severe pelvic pains that would start near my hips and groin area and go all the way down to my feet. While I am very active, I also am a writer, host, and actor, meaning I have to sit a lot at my desk to work. I found that I couldn’t sit down for long periods of time and that even when I walked the pain would be so strong that I would sometimes feel sick. Aside from the pain becoming acutely worse in a very short amount of time, it also started affecting areas of my body like my bladder. I would have to pee frequently and it was annoying and disruptive to my work and life. It was embarrassing as well. A few times I almost peed my pants! Never in my life had I had this happen before.
I waited four months to get an appointment at the Asheville Women’s Medical Center which everyone had told me was the best gynecology center in town. About one month before my appointment, my hairdresser started telling me about a disease that she had called endometriosis. When she explained the symptoms from the severe pelvic pains to the mind-numbing cramps during her period (I have had this kind of pain with my period since age 13, when I would often throw up during my menstrual cycle or not eat because I would feel so sick), a lightbulb went off. That is what I have, I thought. I felt so relieved. To this day I am so grateful that we opened up to one another otherwise I maybe would still be in the dark.
So, I went into my appointment feeling excited and confident. I had done my research, had my list of bullet points about my symptoms, and was ready to ask for my laparoscopy, which is the gold-standard surgery for the disease that removes endometriosis lesions. I was pumped! Ready for action.
Well, this doctor—the “best one in town”—kept me waiting for over thirty minutes. Then he came in and chatted more with me about nominal things rather than taking my pain seriously. When I started to cry and told him that I was desperate for help, he shrugged and said, “This isn’t my area of specialty. Sorry.” (But he wasn’t sorry. I could tell that immediately.) Then he scheduled me for a telehealth appointment and sent me on my way. I ended up in the hospital about a week later and then again, the following week for burst cysts on my uterus and infections caused by them. It was the most physically and mentally draining experience of my life. I would never wish upon anyone what I went through going to the ER alone, waiting for hours to be seen, crying on a couch in a public space, shaking from hunger because they wouldn’t feed me, and having to ask an older, very kind lady to buy me a bottle of water from the vending machine. It was traumatic beyond belief. I have PTSD and never want to go to a hospital again and certainly not by myself. The first thing that the doctors said was, “It shouldn’t have gone this far. This was bad enough that it should have been caught.”
From here, I went back to see a new doctor—this time in Nashville, Tennessee at HCA, whose fiftieth anniversary book I had written. While the doctors and nurses were kind, and I liked them on a personal level, I was shuffled around between appointments and specialists without much thought to my schedule or increasing level of pain and frustration. A pelvic floor specialist even left me on read a few times while I waited to see if I could secure an appointment; I had to hang around Nashville, where I no longer lived. Finally, I got one, and I flew in for the appointment. At this point, I was going into credit card debt to take care of my health but I didn’t care because I love my body. I wanted to feel good and was going to do whatever it took.
That final appointment was the last straw. While the doctor was kind, she suggested that we do three operations that would put me out of work for three months. Never was it taken into consideration that I was a freelancer and not independently wealthy. Welcome to the American medical system: You are not a human being but a number. do not look at your entire life and think how would this affect them? They want to profit off your disease. I hate to say it but this is true.
I am not about doctors profiting off of my body. I love my body and respect it.
Fortunately, I had a trip planned to London where I used to live with an ex-boyfriend and still have many wonderful friends. While in London, I paid to see an endometriosis specialist out of pocket. I happily put my plastic down and paid five hundred dollars to confirm that I wasn’t crazy. My doctor, Mr. Raza at the Cromwell Hospital, saved my life. I cried the entire visit—even during my examination. I was hysterical for part of it because I realized that most of my trauma came from not being heard or seen. My doctor was so incredibly kind and compassionate, and his angel of a nurse brought me tissues. I loved both of them immediately. I was angry and even got snippy at one point yet they still were sweet to me. They kept saying, “We’re so sorry you had to go through that. What a horrible thing to experience on your own.” Their empathy still amazes me to this day even though that is the way things should be.
But when I realized that my credit card wouldn’t raise my limit to pay for my surgery (thanks a lot, Bank of America; I had a zero balance before this nightmare of a situation happened) and my insurance wouldn’t cover it either I became desperate. That was when I set up my Go Fund Me campaign (which I like to call my god campaign because so many angels have donated to it) at the encouragement of my good friend Darrell Talbert, who is like a saint in my life. He has a daughter around my age and sympathized with my struggles greatly. I had also worked for Darrell’s restaurant group, Icon Entertainment, while writing my TEDx talk and he knew what a hard worker I was. He understood that I was simply down on my luck and suffering from a mysterious, hard to diagnose disease. I am so grateful to him for giving me the confidence to pursue a Go Fund Me. I do not like to ask for help. It has been humbling to say the least. But this disease has absolutely destroyed my life and made me start to give up on my dreams, which is unlike me because I am a dreamer through and through. I had to fix it.
Going in with zero expectations, I was amazed when the donations kept coming in and continue doing so. First it was $100, and then $1,000. Now I am up to $9,000 and I can hardly believe it. I feel so grateful. From the five-dollar donations to the $2,000 ones, every contribution has made a huge difference in my physical and mental wellbeing. I am honored to receive people’s kindness and I hope I can return it one day. I accept!
I’m generally a private person, though my life has been public because of a successful writing and speaking career, so my hope with sharing my story is to give women and men the courage to speak up. If you don’t receive the healthcare you deserve, I hope these words may inspire you to find a doctor who cares. If you need money, I hope that hearing from someone like me, who is very proud yet asked for help, may make you more comfortable asking for support, too. I hope that when I make a lot of money, I can donate to Go Fund Me campaigns every day and help people like me who are in need of good healthcare.
Your body is a temple and should be treated as well as possible by you and the doctors who are trained, educated, and supposed to look after it. We need to demand better healthcare in America and especially around women’s health!
Lily Clayton Hansen is an author, interviewer, and actor. As a lover of people and conversation, she has developed her expertise in biographical writing. Since getting her start in her early twenties, Lily has written and conducted a TEDx talk "Talking to Strangers is my Self-Care," which was voted one of the most popular at the Nashville event. She has also written three books, and one e-book, and been hired as a consultant by award-winning authors. Lily has also contributed to celebrity memoirs as an interviewer and ghostwriter and has been sought out by global corporations for her biographical area of expertise.
Some of her notable clients include celebrities like best-selling country music icon Kix Brooks of Brooks & Dunn and global corporations HCA Healthcare, Alliance Bernstein, Keller Williams, and Gresham Smith. She’s written books for Spring House Press as well as articles for local, regional, and national magazines. Lily has also interviewed countless celebrity subjects from Carrie Underwood and Kelsea Ballerini to Sean Brock, Mike Wolfe of "American Pickers," Kelly Osbourne, and Karen Elson. Famous and regular folks have praised her integrity, warmth, and ease with the interviewing process along with her ability to bring out the best in others. By capturing her subjects' true spirits, Lily creates personal, engaging, and creative stories that feel just like her subjects — as their highest selves.
In her free time, Lily loves to act in film and is currently working on a few of her own short film projects. She also has been drawing since childhood and is releasing her first book of portraits in 2022. In her free time, Lily loves adventures of all kinds and traveling anywhere she can. She loves exploring new countries and cultures through.. you guessed it, conversation!
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.