Hello, my name is Kayla and I have a dual diagnosis of Endometriosis and Polycystic Ovarian Syndrome (PCOS).
From the time I got my first period (at the age of eleven), my cycle was very unpredictable. There were times where I would bleed every two weeks for two weeks at a time (aka half the days of the year), and there were times where I would go without a period for months at a time. I was encouraged to track my cycle on a calendar, so that I could predict when it was coming and so I would know what to expect and when. These efforts were futile because my cycle seemingly had no consistency. Around the time I was 16, my mom brought me to the doctor to address some of these cycle problems, and because I was experiencing some acne. My family doctor quickly prescribed me hormonal birth control.
After going on birth control, my cycle did become more predictable, and my acne got a bit better, but I also started experiencing issues like weight gain and extremely heavy and painful periods. I was a huge band nerd in high school and spent the majority of my time doing some sort of music, and my favorite was marching band. I distinctly remember one three-hour Monday night marching band practice, when I was suddenly crippled over with excruciating cramps and a very heavy bleed. Being the marching band devotee that I was, and feeling embarrassed by what I was experiencing, I tried to soldier through the pain, which resulted in me sobbing through the practice, in between running across a football field while playing my baritone. Through my tears, I tried to convince my (male) bandmates that no one in my family had died, and begged them to just ignore me and leave me alone. Eventually, the pain became too much and I walked off the football field before practice was over, where parent volunteers approached me with grave expressions and asked if I was ok. At the end of my rope, I yell-cried, “I have to go home! I am in so much pain!” and quickly drove home. I was so sad that my period was keeping me from doing what I loved, and ashamed that I was so weak. Other girls seemed to deal with their period and it was no big deal, what was wrong with me?
In my early college years, I decided to go off of birth control. This resulted in me going without a period for about six months. But eventually it came back and was somewhat regular, at least by my standards. Around the time I finished college, I became engaged and was planning to become sexually active after getting married, so I made an appointment with a new-to-me family doctor to get a pelvic exam and a prescription for birth control. After explaining the reason for my appointment, the doctor quickly told me, “It will be a lot easier for both of us if you come back for a pelvic after your honeymoon.” I sat in that office, shocked, as she quickly went on to refer to the small amount of acne on my jaw line, the dark hair on my sideburns and the fact that I carried weight mostly in my midsection, and diagnosed me with Polycystic Ovarian Syndrome (PCOS). I was promptly shooed out of her office with a prescription for birth control, a 15+ page packet containing a lot of medical jargon on the causes, symptoms and side effects of PCOS, and tears in my eyes.
Over the next year, I got married, quickly gained a considerable amount of weight and struggled emotionally, feeling like my emotions were out of control and I was on the verge of losing it at any moment. I quickly stopped taking hormonal birth control and used other methods to prevent conception, and thankfully, my moods and emotions returned to normal. Over the next couple of years, I began to experience a lot of sharp, shooting pains that doctors said didn’t make sense. But the good thing was that somehow my cycle actually became regular and fairly predictable.
About three years later, in January of 2014, my husband and I decided to stop preventing conception, in hopes of starting our family. We thought that due to my PCOS diagnosis, it may be difficult for us to conceive, so we figured starting to try a year before we actually wanted to conceive would give us plenty of time. One year and at least a dozen negative pregnancy tests later, it was still just the two of us. This led to a three year season of multiple doctors, fertility medications, naturopathic treatments, fleeting hope and subsequent heart break. Being a mother was the only thing I knew, deep in my heart, that I wanted to be when I “grew up” and the opportunity seemed to be slipping through my fingertips. The last doctor that I saw during this season, listened to my cries for help and prescribed blood tests and an ultrasound to confirm the suspected PCOS diagnosis. After I described the severe, debilitating lower abdominal and pelvic pain I was frequently experiencing, he told me that he suspected I may also have Endometriosis, something I had never heard from a doctor before. He recommended a procedure called an ovarian wedge resection (where a literal wedge of the ovary is cut out via laparoscopic surgery) to treat the PCOS, and said that he would look for endometriosis during the same surgery, and remove it if his suspicions were accurate.
A couple weeks later I went in for surgery. I remember waking up in the hospital bed and being told that I did in fact have endometriosis. He said the endometriosis was Stage II, with a lot of the scar tissue residing on one of my ovaries, but he was able to remove it. When my husband came in to see me after the surgery, I cried tears of relief. For so many years I was dealing with unexplained pain, and finally having confirmation that I wasn’t crazy, and wasn’t making up the pain in my head was such a comfort.
Post-surgery, we continued our attempts to conceive, and eventually tried more fertility treatments. Eventually, after 3.5 years of trying to conceive, and putting my body through the ringer, we were burnt out and decided it was time to take a break. We had always wanted to pursue adoption, and decided to move in that direction sooner than we had originally planned. Around this same time, a friend convinced me to try this CrossFit thing she had been doing and talking about for the past year. I walked into CrossFit Sabertooth carrying some serious weight gain (the result of fertility medications, stress and a newly diagnosed eating disorder) and feeling broken and betrayed by my body, which couldn’t seem to do what I wanted it to. I went to my first CrossFit class feeling nervous, anxious, self-conscious and alone in my struggles.
A year and a half later (plus thousands of burpees, hundreds of pages of adoption paperwork, and 35 pounds lost), I feel thankful for and amazed by my body. I feel loved and supported and encouraged. I feel strong (hey, I look kinda strong too). While I still have days of feeling betrayed by my body, most days I’m able to focus on and celebrate the amazing things my body can do. I know that a full mind transformation didn’t come just from a workout, but this workout (in combination with some nutrition coaching, eating disorder recovery and some serious soul-searching) was a vehicle for God to remind me who I was created to be. It was a vehicle for me to work through the pain, the loss, the frustration and the anger that consumed several years of my life. It was a vehicle to take back that which PCOS, Endometriosis, anxiety and disordered eating had stolen from me.
These days, I’m still dealing with PCOS and Endometriosis. I am dealing with inconsistency in my cycle and a lack of a true “bleed.” I’m on the search for another doctor who can help me with a holistic approach to health and healing. I have a feeling that I have another laparoscopy in my near future. I have days that I get angry about my diagnosis… when I lay in the bathtub for hours, trying to dull the pain of horrible menstrual cramps… when I wish that my health and my life could just be “normal”… when sharp, shooting pelvic pains keep me from enjoying intimacy with my husband… and when I grieve the life that I had imagined for myself. And yet… I have hope and I have a lot of joy in my life. I have an outlet for the frustration, the disappointment and the pain (both physical and emotional). I have found new friends who have PCOS and Endometriosis diagnoses. They remind me that I’m not alone and help me to embrace my “normal.” I have challenged myself to imagine a different life than what I had planned for myself, and you know, I’m actually kind of excited about it.
I’d encourage every woman who is dealing with Endometriosis (and PCOS!) to explore some sort of strength training. It doesn’t have to be CrossFit (though I strongly believe that everyone can and should do CrossFit), but something to help you feel and become strong, when everything in you feels weak. I truly believe that there’s something really sacred about doing hard things (i.e. CrossFit) when you’re going through really hard things (i.e. Endometriosis). Having Endometriosis makes you a warrior, whether you wanted to be one or not, and warriors fight. I hope that my story will encourage you to fight for your health, for your joy, for your right to be heard. There is always hope. You’re not alone.
— The Minnesota Endo Warriors are proud to share Kayla’s uplifting story and are committed to providing a place of community and comfort to those living with endometriosis and their loved ones.
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