Hello, my name is Courtney, and I have endometriosis.
I was 15 when I first learned about endometriosis. I was at the doctor’s office in terrible pain and my mother was in the room with me as we talked with the OBGYN. The appointment was short and I left not understanding how I could just be “having cramps.” I had been missing school, missing sports, missing out on a lot of things when I look back now, because I was in such bad pain that even breathing hurt enough to make me sob. Every month I would lose myself to issues with pain for at least three days, but it could last well over a week on the bad months.
It wouldn’t be until college when I would finally be diagnosed with endometriosis. I was in class when the first cyst burst in my right ovary. I remember gasping followed by the burning pain as I doubled over in a group presentation. I had a wonderful professor who sat with me as we waited for a friend to bring me to the hospital. I climbed into my friend’s car when I felt another burst of pain on my right side, followed by a stabbing jolt in my left side.
Turns out I had cysts in both ovaries: 6 in my right, 7 in my left.
I remember sitting there with the doctor and having them tell me that the damage the ruptured cysts had left behind would make it impossible for me to conceive children. I was 18 at the time and the thought of being a mother had not even entered my mind. I did not care about that future, I cared about feeling better. When I asked the doctor what next, he told me that I basically had “two” options to make the pain stop for an extended period of time:
- Get pregnant. You don’t typically have your period while you are pregnant, so that is one way to avoid the pain. He had just told me that the likelihood of getting pregnant was zero percent, so that left me with option 2.
- Get a hysterectomy. Get a vital organ removed from my body. He then told me about the hormone therapy and all the complications that come with the surgery followed by him saying he refused to perform the surgery on someone so young.
WHAT. THE. [email protected]?!?!
To this day, I still wonder how that doctor got a degree to work with women.
I left the office hating my body and feeling so alone. My mother had endometriosis, so we talked about it a little but even now I still do not know if what we feel is the same. There is this stigma around talking about our periods that made it hard to talk to anyone about it, and I just felt cursed by my body and it caused a lot of self-doubt and self-loathing.
A year and a half after college, the impossible happened. Through birth control, condoms, and infertility I found out on December 2nd of 2015 that I was pregnant.
This was not a part of the plan. This was not supposed to be my life. This was not a blessing, not for me. I continued with the pregnancy, and became a birthmother, choosing adoption for my daughter because my boyfriend and I were not ready to be parents.
The only thing that the doctor from college got right was that the endo pain did go away while I was pregnant. It was replaced with me constantly being sick, my body getting stretched and contorted, depression (especially post-partum), and anything you can associate with an unwanted pregnancy. I was so angry throughout my entire pregnancy, and I still get pissed that this had to happen to me. I understand for many women reading this blog that your dreams of having children have been destroyed by endometriosis, and my heart aches so deeply for you. I could not bear to let my daughter grow up with anything but the best though, and the pain associated with knowing that you are not the best for your child is also unbearable and excruciating.
I ended up having a planned cesarean section because the doctors and I were all worried about natural birth with endometriosis. While I laid there, fully conscious, on the table, the doctor who was literally holding my organs in his hands mentioned that I had definite scar tissue on my ovaries, but nothing like what the notes of my doctor in college had described. I found out, as my daughter was being passed over me to get washed, that I would probably be able to conceive fairly easily when I decided to try. I had come into this hospital room thinking I was going to get my tubes tied and be that much closer to having some form of relief with endo. Suddenly, at the age of 25, the chance of being a mother entered my mind, and it was while a human being was being pulled out of my body. My world was shattered into so many pieces, and large parts of my identity were gone.
I was of a decent enough state of mind to tell the doctor not to go through with the surgery, because I could always get it later on if necessary, but I was not ready to make that heavy of a choice at that moment. When I met and held my daughter for the first time and then on the last time, my life was forever altered, and it was the most agonizing and horrific pain I could go through mentally and emotionally.
Within a few months of becoming a childless mother the endo pain came back and it was even worse than before. I was bedridden as cysts were back in my ovaries and now developing along my cervix. Everything hurt. I was missing so much work right at the start of the year. I had one 3 day vacation in 2017, with the rest of my vacation and sick days spent at home in bed.
2017 was not just a black cloud of endometriosis though. Endometriosis is not the “be all, end all” for women diagnosed with the disease. In 2017 I found Crossfit Sabertooth in Northeast Minneapolis through a Groupon. I thought I would give it a try, and to be completely honest, I left crying after my first week. This wasn’t because Crossfit was too hard or that the people were awful, but I honestly felt like my body was too wrecked to do anything. Fortunately, I had coaches who were with me through everything. Whenever I said I could not do something, they would help me find a way to make it happen. Everything has the ability to be scaled up or down to meet the abilities of the athlete within Crossfit, which is something that I have come to appreciate in more ways than I know how to describe.
As women, we are constantly offered hormones for birth control, hair loss, infertility, and even for diseases like endometriosis. We are prescribed these with complete disregard as to how it will affect our bodies and our mental health. I have struggled so much with weight issues, acne, and spurts of terrible depression while using birth control and now a hormonal IUD. There always feels like there is this part of my life that is completely out of my control with endometriosis and using an IUD, and that feeling of uneasiness is really hard to deal with regularly.
I have found my balance though. While I recognize there are parts of my body that I cannot control, I am learning to strengthen what I can control. I am not letting my body be endometriosis-determined.
Crossfit and Olympic Lifting have made me feel so strong and powerful. It has helped me lose over 100lbs, which is amazing in itself, but more importantly, it has given me a sense of purpose. I am so much stronger than I ever believed I could be, and watching that strength consistently increase is so exciting that it propels me in a direction to learn what else my body can do next. It has also helped me recognize warning signs in my own body of when endo pain is imminent. The frequency of my period has decreased a small amount since starting to live a more active lifestyle, and I will take what I can get! Unfortunately, the severity of the pain has not really gone away, but being stronger overall means that while I am winded by this pain, I am not allowing other parts of my body to exacerbate this pain.
Fast forward to now!
I was really excited when Kayla agreed to be my partner after we did our first partner workout this past spring (May 2018). It was a doozy. We did the Memorial Day Murph together (1 mile Run, 100 Pull-Ups, 200 Push-Ups, 300 Air Squats, 1 mile Run), where we split the work and it made it so much better than having to do a half by myself. We were in it together! Our gym also did a bingo to encourage us to continue what we were doing in a one hour class outside of the gym. Kayla and I ran my first 5K together where we managed to keep our times below 10 minute miles and I set new miles records for myself! Kayla is so strong and so inspiring that I am so blessed to have her as a partner, and while our stories are very different, the physical pain we both go through with endometriosis and our drive to push beyond it as bonded us in a way that I do not think many women get the chance to related to right now.
We are both ready for endometriosis and women’s health to not only be something that is a national conversation, but a conversation that we are not afraid to have with the people in our daily lives. I am ready to be able to say that I may not be able to lift as much today as I was yesterday because my insides are raging. I am ready to stop tucking my tampon into my sleeve to avoid detection that I am on my period. Enough is enough. We are both done with having to hide the fact that we have a disease that really sucks and has turned our worlds upside down.
We are so excited to raise money for MN Endo Warriors, and to help spread the multiple messages that need to be heard. It is okay to have your period and for other people to know about it.
It is okay to talk to your friends and loved ones about your pain and concerns. You should not have to be ashamed that your body is doing what it was built to do. There is support out there, there are people willing and able to help you. You are not alone.
— The Minnesota Endo Warriors are proud to share Courtney’s inspiring story and are committed to providing a place of community and comfort to those living with endometriosis and their loved ones.
Countdown to the 2019 Minnesota Endo March