Four years ago, I broke up with my uterus. This is my story.
I wrote about this last year and as I reflect on what I want to write about for the 5 Year Anniversary of my hysterectomy, I wanted to share this bit again. I am hoping to have something new to share with on my 5 years since the biggest decision of my life, by the end of the week.
Today there are over 170 million women, worldwide with endometriosis (http://www.endofound.org/endometriosis) as for now researchers have not identified what causes endometriosis in women. 6 million American women have Polycystic Ovarian Syndrome (http://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.html#b)
This is the start of my story. I am not a writer and I am not editing this story. I am just posting as I feel and working on how to condense 27 years of medical issues into a digestible story. If you read this, I hope it helps you understand what women deal with daily. I hope it makes you feel like you know me a bit better, and I hope you see through it all, I still smile. I love my life, I love my family, but got damn it, I hate my reproductive system…..
Four years ago today, my life changed. On some levels for the better and some levels for the worst. After a 23 year battle with my uterus, I had to break up with her. She was like one of those friends that you love to have around but after a few hours or a day, you feel overwhelmed and emotionally drained. See, she was necessary in my life but, she brought so much baggage and issues with her that we constantly fought. I mean, I know that sounds silly but over the years that is how I felt about my uterus. I wanted her to be a better friend to me, but honestly she wasn’t. She worked against my wellbeing for much of my life, and caused me so much heartache and pain. So I am going to tell you a mishmash story about how I gained some of my life back.
Four years ago after being on my once a year period for over 67 days, I had enough. I had enough of the pain, enough of the barely making it through the work day. I had enough of the disruption to my personal life, my intimacy with my partner, and just enough of the bullshit. I walked into my doctor’s office after a work event where in the span of two hours I had to change my “feminine protection” four times and said “PLEASE HELP ME BREAK UP WITH MY UTERUS”. I know you are thinking to yourself “did she really say that to her doctor?” and well the answer is yes, yes I did. You see over the years, I created this sense of humor when it came to how my body pretty much ruined my life existence. I mean how does one even deal with being in constant debilitating pain for 22 years? Humor, humor is what saved my life. So yeah I walked into her office and demanded to get my life back. I was 35, no children, and was at the end of my rope. I didn’t discuss this with my family or even much with my partner. I told him I wanted us to have kids. I mean it was something we both wanted, but after so many appointments and surgeries, I knew it wasn’t going to happen. So I walked in that day with my medical file in hand and told my new OBGYN that I was tired. Admitting that you see, was something that was so hard for me. I had to fight my whole life. Fight against doctors, fight against insurance companies, and well damn fight against my own body. Weakness was something not in my vocabulary but this time, I let my guard down and broke down crying so hard that I could barely breathe. I will never forget that day because it was the most vulnerable I felt in my whole life. There I was sobbing with scans of my uterus and ovaries dangling from my hand and the doctor just held my hand and told me “I am going to help you”……
Doctors were never my favorite, they were often rude and cost my parents a lot of money when I was growing up. They often treated my mom like she was uneducated and that I was making up how bad I felt. You see while all the other girls I grew up with were anxiously awaiting their periods, I was wondering why I was always sick, I was wondering why I would get cramps that would cause such bad back pain that at 12, I would be in bed with a heating pad. I was chubby all of the sudden and it wasn’t because I ate a lot. I felt ugly and weird for always feeling sick. My mom would take me to the doctor and they would say it was growing pains and that I would feel better once my period started. Well that didn’t happen until the summer of 1989. I remember it like it was yesterday, I got up in the morning and felt like I was going to throw up, I walked into the restroom and OMG I STARTED MY PERIOD! I was elated. I was like “Am I finally a grown up?” I screamed for my mom and seriously she was laughing at me because I was so excited. That excitement quickly turned to fear and excruciating pain. You see my period lasted over three weeks and I was changing my pads once an hour and I lost almost five lbs and my skin looked discolored. What was going on? Why was I feeling like this? What was I going through? My mom found me a gynecologist at the suggestion of my pediatrician and off we went to the doctor. I could barely walk, I mean I was so weak that all I did was lay on the couch during the day. So my mom dragged me to the doctor and it got worse. Turns out I became anemic, my iron levels were low, I had to experience not only a pelvic exam but also had a transvaginal ultrasound. I was 13 a virgin and there I was with my feet in stirrups and terrified. My first experience with feeling a condom was as it was used on the transvaginal wand & I wanted to die. The doctor didn’t have much to say, she just said I would more than likely develop Amenorrhea, which wasn’t a big deal. That my next period would be better. Except it wasn’t after that summer I had maybe three periods. So the doctor put me on birth control pills and it sucked.
My eight grade year of middle school I missed almost six weeks of school. I had nerve pain, migraines, back pain, nausea, and chronic fatigue. My parents had little money and my mom would scrape up the $10 copay to take me from doctor to doctor. Thanks to my dad’s union job we had great insurance but when you are poor even $10 to see the doctor and gas money to drive across town is a struggle. We kept being told that there was nothing wrong with me & that I was possibly a hypochondriac. I got sent to a child psychologist and after two months of sessions, he helped me cope. He helped me understand that I wasn’t crazy. He inspired me to fight for my health and that I was smart and deserved better care. I will never forget him because he basically saved me from killing myself. I never said that out loud. Not until now but I was 13 and my hormones were fucked up and everyone told me I was crazy. I just felt alone and isolated and some days, I just didn’t want to wake up from sleep. That year was brutal, my mom would go in her room crying because she couldn’t help me. She would cry because she knew I was sick. Crying because she worried her having me because of fertility pills in the 70s was causing me health issues. I made it through my eight grade year by the skin of my teeth. I had to drop out of AP classes and just make it through to go to high school. But I did and damn it, I was better for it.
As high school rolled around, I had been birth control for almost a year. It made me sick the first week of the pack and then I was sick when I started my period. This was my life. I learned to live with it. I would throw up when I started a new pack & I would take time off of school when I started my period, which even with my BC pills was maybe four times a year. I remember once my pill pack fell out of my purse in choir and it was a class with upperclassman, everyone looked at me like “THIS FRESHMAN IS ON BC PILLS”. It was humiliating. I just acted like I was on it to not get pregnant. As a virgin that made more sense to me than for health issues. How crazy is that shit? Life went on, I had crushes and landed my first boyfriend. I didn’t feel sexual and mainly that was because of my hormones, I didn’t have a desire to kiss or hold hands. Needless to say that led to my first heartbreak. During that year my parents got separated and my health still struggled. I trekked on and just rolled with the punches. I tried to cope as best I could and told myself “just one more day, you can make it one more day”. I made it through my freshman year and the summer before my sophomore year, I became sexually active. It was like a shift happened in my biology. My emotions and hormones where everywhere. I felt like how they say a boy does with his libido (it would be 17 years till I found what caused that — will discuss later). I went back to high school and found a new boyfriend who I fell madly in love with. That year is a blur at times, I was so happy. I was in pain all the time but he was understanding and he took care of me. It became an unhealthy relationship because I latched on to him so hard but ya know it is one of those things we go through. My health still struggled and after doing some of my own research, I made my mom take me to the doctor and asked her to test me for endometriosis and polycystic ovaries. I was told that I was 15 years old and it was unlikely that I had these diseases. I was told I was wrong even though I dealt with horrible periods, mood swings, facial hair growth, and chronic pelvic pain. We fought about this for months and FINALLY she agreed to do a Laparoscopic surgery right before my 16thbirthday. Guess what they found when they went in? Scar tissue, scar tissue all over my body and guess what? She still refused to diagnose me with endometriosis or any actual reproductive issue. She said that it could have been caused by me being sexually active at a young age, yet I tested negative for anything that would cause pelvic inflammation. Sigh back on birth control pills I went. I was sixteen and tired. Sixteen and exhausted. Sixteen and I had my first surgery on my uterus. It would take four more years before I was properly diagnosed with PCOS and 17 years before I was diagnosed with endometriosis.