When my daughter was 14, the universe tossed us into an ocean called Endometriosis. We were given no navigation, no survival tools. We didn’t even know the name of the ocean. At first, we drifted, detached and confused, assuming a lifeboat would rescue us. Charlotte was surviving at this point. She was in ninth grade and only intermittently uncomfortable. In the spring of 10th grade, the tide changed and we were in the center of a storm. As a family, we huddled together, but at times we would drift apart. There were some moments of calm, but they were almost always followed by crashing waves. The summer of her 16th year, we were pulled into the depths. We spent almost every week visiting every kind of doctor I could think of. Most doctors offered only a small respite of false hope. In August I found Dr. Seckin online and I had a feeling this was our rescue boat. This is the story of our journey through the stormy seas toward an eventual diagnosis. It was beyond difficult both physically and emotionally, but it shouldn’t be. I’ve left out most of the daily torment a teenager experiences when missing out on life. I need a full book to tell that story. This is an attempt to capture our plight with the hope of fewer families being stranded out there alone.
When a wave builds in the sea it is at first imperceptible. This is how Charlotte’s symptoms started. They were easy to ignore. Charlotte was 14 and always healthy. What could be wrong? She was tough, the only girl on both sides of our family. A fierce soccer player, she would get knocked hard and pop up without a word. She loved soccer and always had the ball between her feet. She played on two teams, made select teams and wanted to play in college. In 9th grade, she started to slow down. Her energy on the field wasn’t the same. Once one of the best on the field, she was barely keeping up. She came home one day and asked to quit the school team. She held on playing travel for a while, but she was slow and often started grabbing her right side, under her rib. I had no idea anything was really wrong and I admit, I had thoughts that she was lazy. She was moody and disconnected to the game she once was so passionate about.
Concurrently she was complaining of nausea and heartburn. Often she would wake up for school and throw up. During her period she would be in the basement curled on the couch with a garbage can, vomiting for 4 days. Her period would pass and there would be a calm until a migraine would hit. The migraine would cease and we had calm for another few days until nausea returned. Nothing made sense. What was wrong? I took her to the pediatrician; I was confused and couldn’t understand why she always seemed unwell. The doctor suggested starting Aleve a few days before her period. That would be feasible perhaps if she had regular monthly cycles.
Each month that passed became more turbulent. Migraines and nausea were increasing and back pain started. I thought a neurologist was the answer. He was a headache specialist. Surely this was the lifeline we needed. He asked us to track her headache days and he prescribed Imitrex. It was assumed that since my mother was a migraine sufferer that Charlotte had inherited the condition. We never logged her headaches along with her period. We weren’t told to and it didn’t occur to us. We continued on Imitrex with no relief and by the beginning of 10th grade, I was panicking.
School was a problem. Charlotte was in honors classes, having a hard time keeping up. Calls came from her teachers about attendance or lack of focus. My emotions ranged from primal protection to anger over lack of motivation. My internal dialogue swayed from “She’s a bright girl, something more is going on.” to “There isn’t enough structure. I need to ground her.” One morning I received a pleading text asking me for forgiveness because she just couldn’t get to school. She was “so sorry to be annoying”. My heart hurt that she felt the need to apologize. I picked up the phone and called her pediatrician. This time I was screaming that more had to be done. Tests need to be more thorough. There must be something wrong with my child. I scheduled an appointment hoping to get approval for an endoscopy. Maybe it was Celiac? I was hoping for Celiac. Yes, I was actually hoping for Celiac. I wanted a course to follow, even if it meant a difficult one. Instead of an endoscopy full blood work was ordered. The only thing it revealed was low vitamin D. The suggestion was for Charlotte to try relaxation methods, perhaps subscribe to the Headspace app, to learn mindfulness.
All that advice did was instill more doubt. “The tests show nothing Charlotte. You need to get to school!” Every morning I was filled with anxiety and dread. Which Charlotte would open the bedroom door, the bright-eyed funny girl or the dark despondent one? I can’t count the number of times I got in the car shaking, thinking of her home another day. My husband, Tom, is a Lieutenant with the FDNY. We are fortunate that he would often be home with her, but he too was getting frustrated. Nausea was bad but was it causing the migraine or was the migraine causing the nausea? There was no clear pattern. Doubt was creeping in everywhere. She’s an adolescent girl. Is there trouble in school? Is it a social problem? Could the academics be too much? Tom and I agonized over how much to push. Was she avoiding school? Did she need counseling? One morning, in a fit of frustration, I ordered her to get up and shower: “You can’t miss school because you have your period!” I left her room angry and anxious. I needed her in school! She was falling too far behind. I got down the stairs and heard a thump, followed in a minute by crying. I ran back to her room and she was on the floor. She had fainted. I was wrong again. Pushing wasn’t the answer. I called in sick to work and took her to the emergency room. Surely they would find something. She was
greeted by a doctor who went on to tell us his story of migraines and to suggest coffee and a dark room. If only it were that simple!
I decided to try a gynecologist. She seemed to provide a measure of comfort, assuring us that the pill would help. The first month was no help. The second month I called and she was switched to a higher dose. The third month I called and she suggested she take the pill continuously, to stop her periods completely. They never stopped. Charlotte continued to be bedridden with horrific back pain, nausea, migraine, and vomiting. I called yet again and the doctor said “I don’t know, I have no answers. This is supposed to work.” It felt like a hand reached down and pushed me under the water.
By third quarter of 10th grade, Charlotte had slipped from a predominantly B+/A student to a D. I frequently received texts from her during the day telling me she was nauseous, vomiting or in fear of a migraine. I contacted the school to request a 504 meeting in order to implement some modifications that might alleviate stress related to frequently being ill. I was still thinking that maybe the stress was making her ill. The school suggested we discuss home instruction. If we didn’t find a way for her to finish the 10th grade, she was going to fail. Reluctantly, we agreed. This was a low point. Home instruction felt like a sentence. Naturally, I was concerned but summer was coming and as a teacher, I had the time to spend looking for an answer. I was hoping to find steady ground.
I called a friend, a heart surgeon. He put me in touch with a wonderful and compassionate neurologist. Finally, a life vest. He understood that our goal was to get Charlotte back to school in September. He changed her migraine medication and referred us to other specialists. We were going in the right direction, or so we thought. We began with an endocrinologist who did a full blood workup. I was sure this time something would show. No one could be this sick with no answers. However, bloodwork showed nothing so she suggested a gastroenterologist. This has to be it! She prescribed Prevacid and said call in 6 weeks if it isn’t better. I called in three and we scheduled an endoscopy. The test revealed esophagitis, likely caused by the frequency of vomiting. In the meantime, migraines and horrible periods never stopped and sleep became a problem. The neurologist suggested we seek the advice of a sleep specialist. The only advice was more of the same - try calming methods, turn your phone off early, drink chamomile tea.
The pill was still doing nothing despite being on it continuously. I tried desperately to find a new gynecologist but couldn’t get in anywhere without at least a 3-month wait. A friend who was watching this all unfold called a gynecologist she knew and I got an appointment right away. Maybe this doctor had an answer. Again, it was birth control. “You need to try different pills until you find one that works.” Continuous Ortho tri-cyclen was prescribed and we waited. Like everything else, maybe this was the direction? Were we headed toward safety? Nothing changed.
During a visit with the neurologist, he mentioned that the migraines seemed hormonal. I started doing research and I found Dr. Seckin. I called one afternoon in August. Charlotte was very sick that day and I was distraught. I went for a walk and called Dr. Seckin’s office from my cell. I was despondent and Holli heard it in my voice. I told her what was going on. She listened and told me to come in. “He will fix it” I scheduled an appointment and when I hung up I thought to myself “Someone just listened to me and I didn’t feel crazy explaining it”.
September came and it was worse than the spring. Charlotte attended school 4 full days in the month. Most mornings she could not function to get in early because she was so nauseous or was fighting a migraine. Several times she fought through the pain only to lay on the bathroom floor in agony. Every day was a struggle to stay afloat.
We met with Dr. Seckin in early October. Prior to the meeting, I was anxious but I felt like there was a good chance we might be looking at our rescue boat. He asked us many questions about her symptoms. Many of the symptoms he inquired about, Charlotte had, but a good number she did not. As she started to say “No” to symptom after symptom, I got nervous and remember feeling physically ill. “I’m wrong. This isn’t it.” I mentioned that I had struggled with infertility and endometriosis, but that my symptoms were never as strong as hers. He seemed to know then that more exploring was needed. I did not understand at the time that it was hereditary. Charlotte had an ultrasound and Dr. Seckin scheduled an MRI. He was compassionate, soft-spoken and confident, yet I still felt unsure. Endometriosis was Charlotte’s disease but it lashed out at me, making me unsure of every decision and of every doctor. I wanted a definite answer. I wasn’t sure I could hold on until surgery to find out. He sensed my anxiety and promised she would get into surgery very soon.
It took a few days to have the MRI approved through insurance and a few weeks to schedule the surgery. In the meantime, Charlotte’s neurologist was getting worried about her mental state. He feared she would slip into depression and I told him she was always anxious. He suggested I try to find a psychiatrist to work with Charlotte. This led to the moment that I think best describes the judgment patients with endometriosis deal with.
We arrived at a psychiatrist's office and we sat explaining all of Charlotte’s medical issues. I was tired of this dialogue and was more prepared to discuss her psychological issues. Consider the many events Charlotte missed, the fact that she had to delete most social media because she couldn’t watch everyone else have fun while she missed out on everything her friends were doing. Instead, the conversation switched to missing school. “You mean you miss school because you have your period?” I tried counting and breathing through her judgmental eyes, knowing the wait for another psychiatrist was 3 months away. She told us that she worked in a school and she couldn’t believe that Charlotte’s school was putting up with this. “Has the school visited?” “Has anyone contacted Child Protective Services?”
Absorb that for a second. A psychiatrist who is told her patient suffers from a chronic migraine and probable endometriosis actually asked if Child Protective Services had been called. At this point, Charlotte snickered and picked up her phone. She texted me “What kind of devil incarnate did you take us to?” To be honest, I can be quite hot-headed. I was pretty proud that I didn’t leap across the desk and rip out her larynx. Sadly I think we’ve gotten used to the judgment. The doctor waved her hand and wrote a prescription for Zoloft. I never filled it. In my periphery was Dr. Seckin. I explained to Charlotte that this was just another person who didn’t understand. I told her that we would be finding an answer soon.
Surgery was 11/16 at 11 am We assumed it would take about an hour and we expected to go home that day. Again, what is expected is not always what occurs. Charlotte went in at 11 and by 1:15 she was still not out. I turned to Tom who was sure Dr. Seckin found more than we anticipated. At 1:30 Dr. Seckin came out. The first thing he said, “She was nauseous often?” I replied yes. “She was a very sick girl. Endometriosis was on her appendix. I took it out. She will come back” I couldn’t believe what I was hearing. Her appendix was the cause of her nausea. Dr. Seckin explained how rare this was. He was also visibly irritated that no doctor had ever suggested looking at her appendix. I was a mixed bag of emotions. No one wants this diagnosis but he found the reason she was so sick. I hugged him. For the first time in two years, I felt the ground was beneath our feet.
In the end, despite the horror of watching my child sick and struggling each day to keep her afloat, I know that with this disease, we were lucky. 1 in 10 women suffers from the pain of the disease and the agony of being dismissed for 10 or more years. Charlotte experienced severe symptoms in two years. The horror of it attacking her appendix is a rare but fortunate circumstance. If she had not been so symptomatic, I would not have looked for Dr. Seckin. The word endometriosis was never uttered to me. I was guessing. That is sad but it has made me more determined to create awareness. It is necessary for this disease to be on every doctor’s checklist and on the radar of every insurance company so care is never denied. We can not continue to allow women to be stranded, alone and desperate for help.