For Event Registration, text ‘ ENDO2020 ’ to 66866.

Meet Lily: Teenage Endo Warrior

Hi, I’m Lily and I’m 18 years old. I am the 1 in 10 women, and one of the 200 million women worldwide affected by Endometriosis. My journey with Endometriosis began at the age of 14. I began struggling with an array of symptoms including immensely painful periods that were extremely heavy, daily migraines, fatigue, brain fog, insomnia, night sweats, dizziness, abdominal pain, bloating, severe gastrointestinal issues, and urinary issues. Quite a list! A list that my endo sisters are quite familiar with.

I felt awful and knew something was wrong, but I did not know what was happening to me. On top of the pain, I was also truly embarrassed and ashamed of my own body! As a young teenager, I was already self conscious and getting used to dealing with my changing body and periods. I tried to hide my troubles from everyone outside of my family. It wasn’t too hard to hide at first, as nothing was visible, but I could not deny to myself the pain and difficulties that grew with each period. 

I saw so many doctors on the road to my ultimate diagnosis. Doctor appointments replaced time with my friends and doing homework at a reasonable hour. Being in pain and seeking help to no avail became my new normal. Individual symptoms were addressed: iron infusions to help with my ferritin deficiency due to so much loss of blood during my periods; medicine to target my migraines (which never worked); salt pills to help my dizziness. The list went on.  Morning medicine, middle of the day medicine, nighttime medicine. Pill bottles stacked up in my drawer and the pharmacist knew my mother’s name by sight. The concept that other people didn’t have to go to the doctors all of the time or try new medications weekly was unfathomable to me. Looking for answers became a full time job. I saw several different GI doctors, Gynecologists, Cardiologists, Hematologists, Sleep Specialists, and so on and so forth.

My symptoms were inconsistent and ever changing, one problem worse than the other one day, one day I’d be a little bit better. The next day I’d find myself  in an extremely bad place medically. I remember not being able to get out of the car to take my college entrance exam because I was doubled up in excruciating pain and we had to turn around and drive the 40 minutes home. Another time I had to find a store quickly to buy a pair of jeans when I bled through my oversized pad and through my pants while at a beach boardwalk celebrating my best friend’s birthday. Every day, a new bad memory was being formed. All of this impacted greatly every attempt I made to be a “normal” teenager and do the things my peers could do effortlessly. 

The only consistent thing was what the doctors would say to me and how the doctors would treat me. For three whole years, every doctor I met with would tell me that my symptoms and all my pain were in my head. I was told time and time again that the cause of all my symptoms was anxiety, that I needed to get help, and that through therapy, everything would get better and that all of my problems would just go away. So to add to the list of appointments, now I had to meet with a therapist weekly for “anxiety.”

For 1095 days I lived in horrible debilitating pain knowing that it was not in my head. I think that was one of the worst parts, constantly being dismissed and belittled by professionals. I lost pride and a sense of myself, as my pain took me away from school, social activities, participating in my hobbies, whilst being told that none of what I was experiencing was truly valid. I was powerless to get the medical help I needed, to be believed, to be taken seriously. This led to developing PTSD from consistently being gaslighted and dismissed. Mental health issues did not cause the pain I felt, but having the pain routinely dismissed, leaving me without answers, help or a light at the end of the tunnel for my suffering did lead me to develop mental health challenges.

My mom and I soon became what we like to call “google doctors”, as we realized that it was up to us to find our own answers.  My mom was spending hours researching possible causes and had come upon Endometriosis. While talking to her friend who had Endometriosis about my symptoms, her friend said that it indeed did sound like I too had Endometriosis. Her friend had been a patient of Dr. Camran Nezhat as a teenager and she gave my mom his information. What a gift!  Meeting  Dr. Nezhat was life changing. He was the first doctor who listened to me and believed me. He told me that my pain was real, and that it sounded like Endometriosis. He did a vaginal ultrasound, and it showed signs of Endometriosis.

The following week, October 18, 2018, at the age of 17, I had my laparoscopy. The results showed that I had stage IV Endometriosis, that it was covering my bladder, uterus, rectum, and bowel, and that my bowel had become attached to my cervix. It also showed that I had Adenomyosis and cysts. On this day, I finally had the concrete proof that the pain was not, and never had been in my head. Dr. Nezhat provided me with the surgery I desperately needed, the validation and support that I had been lacking and he gave me a voice. He helped me begin the process of healing physically and psychologically.

This experience taught me that I should never accept mistreatment and dismissal from doctors. I learned that although I am a patient, and have not gone to medical school,  I truly know my body, and I know what I am experiencing better than anyone else. I learned that I truly needed to advocate and stand up for myself and what I deserve in terms of care and consideration. 

I realized that finding the right doctors is like dating: one might have to go through a lot of bad dates with the wrong people to find the select few you want to meet with again, who you make you feel comfortable, who listen, who care  and have something of value to offer you. Finding the right doctors was a long and laborious process, ripe with meeting many of the wrong ones along the way, but I am here now with the right people offering me the right diagnosis and treatment.

I’ve continued to meet with Dr. Nezhat post surgery. My endometriosis unfortunately  started to grow back aggressively. Listening to my options, I made the hard decision to be induced into menopause to suppress the regrowth of the Endometriosis and stop the pain. It sounds crazy right? A 17 year old in menopause! Maybe it is a little crazy, but it has truly changed my life. The once bed bound Lily became the thriving Lily. Yes it comes with a price: I experience hot flashes all the time, I sweat like crazy, and my insomnia has worsened, but I no longer experience Endometriosis pain. I had never imagined being put into menopause at 17 years old, but it has opened up my world by decreasing my pain and increasing my functioning.

That’s the thing about having a chronic disease-it forces you to learn to be open, flexible, and accepting. The path that you once believed you were on or wished to be on may have completely changed. Mine continues to change day after day. Since my surgery, I have been diagnosed with several other disorders that now finally explain all the symptoms I started experiencing at the age of 14. The other disorders I have been diagnosed with along with Endometriosis are Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Complex Regional Pain Syndrome, Visceroptosis, Interstitial Cystitis, Pelvic Floor Dysfunction, and Vulvodynia. Something that I have learned through this journey is that many other women who have Endometriosis also have these other disorders, as they all connect in different ways. If you have one you may be more likely to have another.

Before I was believed, I was in a very dark and deep hopeless hole full of despair. I never thought things would get better. After my diagnosis with Endometriosis, I emerged from this hole with hope, with powerful information and a wonderful community on social media of other girls with almost the exact same story as mine, who were not believed and their diagnosis was delayed years. I found light and passion in having a voice and spreading awareness. I hope to help other girls and women reach a place of acceptance of their disease but not acceptance of their pain. I hope to help other girls advocate for themselves and get the treatment they deserve. I hope to help shorten the diagnostic delay average of 6-10 years. This is just not acceptable.

I also plan to go to school to work in the medical field to give young girls a better experience from the beginning of their struggles, to be heard and believed. I once saw doctors offices and testing facilities as a place of harm and trauma. Having received my diagnosis and a framework for understanding my body and my challenges, I can now work with doctors and be involved in the medical system, armed with surgical reports to back it! I will no longer feel lost and disempowered. Medication can now be helpful instead of a bandaid to some undiagnosed problem. Tests can give a possible answer. A doctor’s office can be a place of support. I won’t accept less and neither should you. I am chronically Ill. I will have these challenges for the rest of my life. I have many bad days. Probably more bad days than good days. But even though I struggle with chronic pain and challenges daily, I am stronger now and like who I am. I feel better inside myself and I get up everyday and find something positive to hold onto. I once felt ashamed of myself because of my medical problems. I hid my medical problems. Now, I am proud of who I’ve become because of my medical problems. They have made me stronger in all aspects of my life and have given me a heightened sense of appreciation for everything around me. My illnesses have shaped me into the resilient woman I am today and continue to be: A proud Endo Warrior.