EndoMarch Headquarters (HQ): What were the first symptoms you experienced with Endo? How did your symptoms progress? Do you have classic endo symptoms or atypical? When did you first hear about endo and when did you think you may have it? How long did it take you to get diagnosed? What is the hardest part about your Endo?
I refused to run the ‘mile run’ in high school for fear of the pain. I hadn’t, at that point, connected the pain to an actual issue – I assumed I was just out of shape (mind you, I was about 110 lbs, ate pretty healthy, and walked everywhere. I wasn’t really as out of shape as I led myself to believe). It wasn’t until I was about 18 years old (I am 26 now) that I began to have irregular periods, it would be two weeks late and extremely heavy. It was alarming to me because I never had an issue with my period before. I started when I was 12, it was always light, no cramping, and right on schedule. When my periods first started becoming irregular, the cramping began – which like I said, I never experienced before.
Over the next about 6 months, it got worse and not just during my period, it would hit me out of seemingly nowhere. One day, I woke up with an extremely painful UTI – the kind where you can’t even walk. I tried to push passed it because I had work that morning. I got about an hour in, and I had to call my boyfriend to get me from work and taking me to urgent care because there was no way I was going to be able to continue trying to work. I was put on antibiotics and sent on my way. About a month later, it felt as if I was still having residual pain from the UTI, so I made a doctor’s appointment with my family doctor. They ran a bunch of ultrasounds, performed a pap smear, took blood and urine samples. They couldn’t find anything wrong.
Another month went by, and I was still having lingering pain and decided to go back to my doctor. Yet again, they ran a bunch of tests and sent me on my way. About a week later, my doctor called me after getting the results from my ultrasound. She told me that they couldn’t find the cause of pain, but that they did notice an abnormality on my ultrasound. The doctor continued to inform me that I had what is called a bicornuate uterus (meaning there is a division in the womb that makes conceiving or bearing children difficult). Since she was not a specialist in gynecology, she referred me to an OBGYN to discuss what this meant for me.
I met with the OBGYN a few weeks later, and not long into our conversation he asked me if I had ever heard of Endometriosis. I honestly don’t remember much from that day or that conversation, I was too freaked out over the words “possible surgery”. But the answer was no, I had definitely not heard of Endometriosis before that day. A little over a month later, I went in for surgery and came out with an official diagnosis of Endometriosis. The OBGYN deemed it “stage IV” because my right ovary was adhered to my colon, but other doctors have not agreed that it is as severe as stage IV (I don’t really believe in the staging system anyhow).
All in all, it only took a year from the moment that I thought something was really wrong, to when I got an official diagnosis. The hardest part about realizing and coming to terms with having Endo is knowing that it is going to be a lifelong battle. I didn’t realize that until after my second surgery. My symptoms now are definitely different from when I was first diagnosed with Endo. It started with the few classic symptoms of odd periods, and some pain. But I believe that after all of the procedures and hormonal treatments, I think I am just adding symptoms on top of symptoms now. Pain 24/7, ‘Endo Belly’ almost every day, weight gain, fevers, IBS symptoms, the list goes on…
After luprolide acetate, I was put on the birth control shot, Depo-Provera. Which was a little more bearable, I was just as irritable as the pill had made me and it also did nothing for the pain. I have sworn off of hormonal treatments. Although, I did have to take 3 months of the birth control pill before a procedure when a polyp was found in my uterus about two years back, but it also gave me 3 months of a non-stop period. So that only increased my dislike for hormone drugs.
After discussing what I had learned with my husband, we decided to look up Dr. Cook online to see where he is located. We live in Elk Grove, CA (which is just outside of Sacramento), Dr. Cook works out of a private office in Los Gatos, CA. Which for those unfamiliar with Northern California, that is only a couple of hours away. I was so excited. I filled out his online form for a free record review. Within a day or two I received a call from his office. They had me give a brief overview of my history and told me that the next step would be an in-person consultation with Dr. Cook.
But then the bad news came, they did not accept my insurance provider and the cost of the consultation was a little over $700. My husband set-up a GoFundMe account to raise the money, and thanks to some very generous donations in just under two weeks, I was able to schedule my appointment with Dr. Cook. I was in his office a week and a half later. It was like meeting a celebrity, I was so excited! The consultation went amazing.
But again, bad news. The surgery would cost an upwards of $26,000. The next day at work, I was explaining my situation with a friend/co-worker who owned his own clothing brand along with working for the County of Sacramento. He gave me the idea of creating fundraiser shirts to help me save up the funds. I took it one step further. It was as if a lightbulb finally switched-on. What if I created my own brand, an Endometriosis Awareness Brand? I took the idea and ran with it, I spent that entire afternoon running back and forth to his desk brainstorming. It needed to be more than just about me, I am not the only one struggling to scrounge up the money for this procedure. I quit my job and put my full focus and energy into Cosmic Lotus.
My ultimate-goal would be to fund surgeries for others who are struggling to afford it. I decided 10% (for now) would go towards Endometriosis research. Hopefully, someday I can get that number higher. The research of Endometriosis is so key to helping our future Endo Family, so that they don’t have to jump over as many hurdles and so that doctors have better knowledge of the disease. At the end of each year, I will conduct a survey of the Endo community to decide which research group the funds should go to. With Cosmic Lotus, I want to give a voice and include as many as I can in the Endo community in everything I do.