Kate’s Endo and Adeno Story

This is my story. Where I was, what happened, and where I am today.

     By the time I was 13 years old, I had already been having monthly periods for three years; it was terrifying at such a young age and I felt like I couldn’t relate to my peers. To compound the fear, two months before my 14^th birthday I experienced a period that was unlike anything I had before. As I was trying to get ready for a family dinner, I became doubled over in pain. My sister had experienced similar symptoms with her period and told me to take some Aleve until it passed. At dinner, my mother commented on my dazed-out demeanor; I didn’t feel right. This became my monthly norm. My periods were never irregular or light. They were heavy, always on time, and brought at least one day of pain that truly made me think I was dying. My mother sympathized but had no idea what to do to help me beyond NSAIDs and heating pads. Of course, I missed many days of school; sometimes I would spend the day sleeping in the nurse’s office. I had one school nurse whose daughter had experienced the same pain so she would let me rest all day if needed. I’m not sure when my first gynecologist visit was, but it was sometime between my sophomore and junior year of high school. Everything was always “normal”, and I was told to continue managing my pain until I was ready for birth control. I was placed on Vioxx until it was recalled, then went back to Aleve.

   When I was 17 I decided to try low dose estrogen pills; they did nothing but make me feel emotionally turmoiled. I tried Yasmin; this made me worse emotionally despite having shorter periods. The pain was always there. I may have tried another pill, but I’m not sure, and by this time I was disgruntled with the side effects and their lack of pain inhibition. The older I got, the more complacent I became about my condition. I was repeatedly told it was normal. At work, I was viewed as dramatic and at school, I appeared lazy. Many of my coworkers are mothers so they couldn’t believe I was experiencing pain worse than childbirth. In my early 20’s I discovered that alcohol helped me experience less pain. I drank a lot, but the pain would come at me with a vengeance later. My friends began to see me in horrible states that were not only embarrassing for me but made them uncomfortable. I would have to tell them I would be okay and that I just needed towel soaked in hot water and Aleve. When I was 22 I lost approximately 25 pounds via HCG injection diet. I have no idea if it was placebo or just the (lack of) food I was eating, but it was the first time I didn’t experience significant menstrual pain. I was only on the diet for about 30 days, but I had a period that didn’t cripple me. At that point, I decided to ensure a healthy lifestyle to reduce the pain. Unfortunately, after one very intense workout, I had my first experience going into shock on the bathroom floor. My period had not started yet and I truly thought I was going into labor. I almost passed out multiple times and I couldn’t reach my cell phone to call 911.  Within an hour it was done. I was horrified and immediately called my sister. She told me she began to experience similar scenarios when she was in college, and she admitted she thought it would continue to get worse as it did for her.

     So, I continued to push on with my fitness and diet, hoping that maybe I just needed to be healthier. The next time it happened was in 2013. It was a summer day and I was trying to cope with my menstrual pain by being outside with my grandparent’s horses. I had taken some herbal supplement instead of Aleve that day, I guess I was hoping it would do more for the cramping. I was supposed to be at work that evening but when I sat in my car to leave my grandparent’s I felt an unusual sensation in my pelvic region. I couldn’t see straight and I had to crawl out of my car onto the ground outside. I managed my way back into my grandparent’s house. My grandmother asked what was wrong and I told her I had to get to the bathroom immediately. I had painful bowel movements followed by breathtaking pain that lead to me writhing in pain on the floor. The cool vinyl flooring was the only thing that felt good on my skin. I started to pass out, so my grandparents immediately called the hospital to tell them we were on our way. I will never forget that ride to the ER because I thought those were my final moments. I have never been pregnant, let alone given birth, but for some reason, I knew that I was having contractions. I counted how long each one was lasting because it was the only thing I could do while trying to survive each passing second. I can’t remember how long each contraction was, but I know they were consistent and I was maybe getting three seconds between each one. I was rushed into the hospital in a wheelchair where they asked my level of pain. I could not believe they casually asked me on a scale of 1-10. I cried and told them, “A 15!?” I told them I was having contractions that were relentless; like someone grabbing my uterus and squeezing it like a stress ball, then letting for a few seconds before going again. They injected me with narcotics, but nothing was working. Eventually, they injected me with enough to dull the pain, but mostly they knocked me out. Within two hours, I was fine. They did every routine test, transvaginal ultrasound, you name it. Nothing was wrong with me, according to their tests. I was told to follow up with my gynecologist. My regular doctor had just moved, but I was told the gentleman I was going to see was fantastic.

   Within minutes of meeting with this doctor and showing him my reports from the hospital, he told me he had no idea what was wrong with me, that It was probably a random incident, and that I needed to be on birth control. I explained my inability to tolerate birth control and he told me there was absolutely nothing he could do for me if I was unwilling to be on birth control or take Miralax to help with constipation he insisted was causing my pelvic pain. He would not listen to anything I was saying. I began sobbing and at that moment I felt so low. The scariest incident of my life had just occurred and this man I was supposed to be entrusting my health with had completely dismissed it. I was angry and going to figure this out. In a stroke of luck, a guest at my work mentioned a doctor in the area who had managed to diagnose a disease that other doctors couldn’t. He suggested that I might as well visit him to see if he had any ideas. He is an internal medicine doctor so I felt silly going to him with my gynecological issues, but off I went in desperation.

     When I met Dr. Erickson he asked me questions. He listened to my answers. He let me get it all out. He sat back and said, “I think I have an idea. I think it may be something called endometriosis, but we must get you surgery to diagnose it.” He explained what he knew of the disease, but admitted his knowledge was limited. The best part was that he reassured me the pain was very real. He told me that whatever I experienced was not normal and that we would find an answer. He said “we,” and I knew that I could count on him to help. He prepared me for what a gynecologist will probably say and what to say back. He warned me that because of my young age they may not want to perform the laparoscopy to look for the endometriosis. I had found a new gynecologist and she was hesitant, continuously bringing up how she didn’t want to affect my chances of becoming pregnant in the future. I almost laughed out loud. I thought to myself that she must have no idea what the pain is like if she thought I had the ability to even think about having a child while coping with this pain each month. With the help of Dr. Erickson and talking with the gynecologist, I was scheduled for surgery just a few months after my visit to the ER. Dr. Erickson had been right. The doctor found endometriosis is three different areas. I was relieved but terrified. She told me that she removed what she saw, but said me it could grow back and that I would need hormone intervention to prevent future pain.

     I couldn’t believe that was it. I reluctantly tried a progestin pill. I gained weight, I kept having horrible periods, and nothing changed. I eventually quit. I tried everything I could to feel better; I saw a naturopathic doctor at the same hospital as my surgery. I took every suggested supplement, ground up seeds at different times of the month, eliminated non-organic tampons, I quit drinking alcohol, lost weight, lived in the gym, you name it. I looked great! But, I still felt like hell for at least two weeks a month. During this time my sister also had surgery to confirm she had endometriosis.

     Fast forward to my sister’s second surgery. My sister had been fortunate enough to already have surgery with Dr. Sinervo at the Center for Endometriosis Care and be well into recovery while I was still finding my way; she was paving the way for me to continue to fight. My sister warned me about it being a progressive disease; she had experienced the same changes as she got older. I was continuously exhibiting bizarre symptoms, to the point where I was undergoing autoimmune nuclear assay testing about once a year. Christmas of 2016 endometriosis gave me my final reality check. I was taking care of my mother in Arizona after she had retina surgery when I immediately began to feel like I was getting ill. My low back was aching horribly. At first, I thought maybe I was nauseated from removing the tape from her eye, so I told her I had to go lie down. I began to get very uncomfortable like I was experiencing food poisoning. The cold sweats, the rumbling stomach, the disoriented feeling. I started to move from the bed to the floor, then to the couch and back. I had a sudden bowel movement that left me hanging onto the toilet and eventually falling on the bathroom floor. I felt my first contraction and stabbing after the bowel movement and I knew right then and there that it was about to get serious. I asked my step dad to call 911. I profusely apologized that this was happening while I was trying to care for mom. He had never seen me go through this before and was completely awestruck. I began to go into shock on the living room floor. The fire department arrived, covered me in blankets and ran my vitals as I was violently shaking. As usual, vitals were fine, but they couldn’t stop my seizing. This was the first time I had experienced the un-controllable shaking; my legs would not stop moving. The ambulance arrived and they administered fentanyl. I felt like an old pro at this point. I calmly explained to the paramedics what was happening and that this was not the first time this has happened. I arrived at the hospital in about 20 minutes. The ER doctor came in, asked what happened, and I matter-of-factly explained to him that I have endometriosis, and this was just how I live my life with the disease. He was surprised I didn’t take any pain medicine and in disbelief of how I managed, but I explained that they don’t help the pain enough to justify taking them. The doctor asked what I wanted to do and I told him I was ready to go. The whole experience in the hospital this time around was almost comical because it was just so sad that I knew the routine by now. I knew the disease wasn’t going to wait for me to graduate college, as I had planned.  When I got home from Arizona, I immediately met with Dr. Erickson to make a game plan. He wrote me a letter for school to be excused whenever the pain became unbearable. He allowed me to stop by his office for an injection of Toradol whenever I needed. He also provided me with a prescription of Toradol for when the pain hits me in the night or on the weekends but informed me about the dangers and how to appropriately take the medicine. He helped me survive until proper surgery.

     My endometriosis journey had been going on too long, and I was exhausted. The months were getting worse. I felt like I was at a dead end; I genuinely thought I would be able to wait until I had a career before diving into the next step of treatment for this disease, but I realized that I had to try my hardest with health insurance through my school and somehow make the surgery happen. I realized that the disease was inhibiting me from doing my best in school and being a contributing member of society. I had come too far, and I refused to let the disease stop me. The Center for Endometriosis Care saved my life. Dr. Sinervo found endometriosis lesions, adhesions, and endometriomas throughout my abdominal cavity. Adhesions were wrapped around my ureters and aorta. Lesions were found as far as my diaphragm. He explained that 70% of my pelvic peritoneum had to be completely excised due to damage that was done from surgery with a prior OBGYN and the disease progression. OBGYNs had failed me. Basic ablative surgery failed me. I have now been endometriosis free for a year and a half. I was fortunate enough to have surgery for adenomyosis six months after my excision of endometriosis that confirmed NO endometriosis was left behind along with NO adhesions. The surgery was an amazing success. It doesn’t end there with endometriosis, but I had my life back. For residual pains and healing from years of trauma, I am undergoing pelvic floor therapy, which is another necessary component of our healing. Now I am here to help guide you through your journey.