My Endo Journey - Pt 2

In those 5 years; I danced in France with my ballet company and got hooked on the dream of performing in theaters around the world, I graduated high school in the top 10% of my class, National Honors Society, I danced 6-7 days a week and assisted classes to sunset the cost, I was in The MI State Police Explorers.

It was as if all the pain of that year fueled this fire inside me to chase after everything I could while I still could. 

I was relatively pain free. The dr had taught me how to manipulate my period with the birth control so that I decided when I could take a week off of life. Often planning it over school breaks, or when a performance was over. They gave me Vicodin to get thru the week, just in case. But I didn't really need it. That pain in my back was gone and although the cramps were intense it was not the same kind of pain. So I took the pills - 1/2 at a time for a week straight and zombied my way thru it. It helped. We were "managing" this disease well I thought. 

I was awarded the presidential scholarship to a private college on the upper east side of Manhattan, and accepted into one of the most prestigious dance departments in the country. I left for NYC a week after my 18th birthday ready to take Manhattan by storm. We danced from 8:30a-5p at night between classes and rehearsals. Academics typically were 7p-10p and then homework. Weekends were filled with hours of rehearsals for 2-3 different shows we were performing or choreographing each semester. It was relentless and I loved every second of it.

My junior year I woke up on the bottom bunk of our tiny apartment with tears immediately streaming down my face. I hadn't felt that pain in 5 years, yet I knew instantly what it was. The endo was back. 

My parents were at a sewing convention in Chicago and cell phones weren't common yet. I had them paged at the McCormick Center and by the time they got to the phone i was in hysterics. I remember just sobbing it's back over and over again. 

I think after my first surgery, and we were "managing" the disease; part of me thought I was past the hard stuff. 

Google barely existed and it certainly wasn't a tool we could use yet. I went to an ER who called me a drug seeker. My Dr in Michigan was gone and I was in NYC so we had to find a specialist there. 

She had a cutting edge "miracle" treatment that was sure to cure me 🙄. This would be first time I was given depot lupron - a chemotherapy developed for prostate cancer they found also found induced menopause. 6 months - 6 injections. Miraculously cured. We were so hopeful.

The director of the dance department told me no one will understand, you need to keep this to yourself. I lost 25lbs that I didn't really have to lose. There were days I couldn't get out of bed. There were days my emotions were so volitile she sent me home. There were days I made it to the ballet bar and would have a hot flash. She'd whisper in my ear - probably meant to ease my anxiety but it did the opposite - some remark about it. I'd then have to endure an hour and half of rigorous ballet training before I could let the anxiety and anger that was simmering out to boil.

I was isolated from my peers. There were days I could do everything and then the next I couldn't pull myself out of bed. There were rumors of drug use. I looked emaciated. 

I traded pain for depression, hot flashes, isolation, mood swings, and the pains of shocking my body into menopause at 20 years old. 

She'd send me silly hey we're going thru menopause together cards to cheer me up. I still have them.

Without even a second glance I was allowed to take these chemotherapy injections for prostate cancer on an international flight with me so that I could study abroad for the summer as planned. No problems at airport security or customs. 

Less than 30 days after my last chemo/menopause shot - the pain was back ten fold. 

Now because it was birth control and still not recognized for its medicinal purposes; I had to write another letter begging for continuous birth control to get me thru to winter break. My father did too. So did my doctor. 

I found out a few months later the "miracle" chemo/menopause shot was causing cardiac arrest and heart failure in women taking this for unintended purposes - aka NOT for prostate cancer. 

3 letters to get birth control approved for a surgically diagnosed disease. 

It finally was approved, and I spent the next four months dancing, rehearsing, and taking collegiate classes 8:30-10p 6-7 days a week and suppressing my period.

I went full force until the pain took me down. I went missing for days, my body finally saying enough. Rumors continued. Dance director continued to tell me no one will understand, keep it to yourself. I made it to January and had my 2nd laporscopic surgery over break at home in Michigan. My mom found another incredible doctor somehow.

I was 21. 

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#endometriosis #womensrights #womensrightsarehumanrights #roevswade #standwithher #proroe