Imagine waking up from pain, not just any type of pain, but a pain so bad it feels like someone is ringing out your insides like a wet towel. I’d get out of bed and try to walk to the bathroom across the hall and collapse on the floor, crawling to the bathroom thinking to myself, “this is it, this is where I am dying, on this cold bathroom floor.” I would throw up a few times from the agonizing, cramping pains and then finally crawl up the stairs trying to get to the medicine cabinet to get Advil and Vicodin to give myself some relief, any relief. Some days it would help but most of the time it wouldn’t. I would lay on the couch all day with my heating pad praying to god for the pain to go away for even 10 minutes. I would fight my parents to let me stay home from school because they couldn’t understand how I was in so much pain when every doctor they took me to would tell them I was fine because all my tests were normal.
Finally I heard it, “Endometriosis”. I remember thinking “Endo what?” and after countless doctors and years of doctors telling me there is nothing wrong, I finally thought I found someone who would listen to me. Little did I know this doctor didn’t know much about what he had just diagnosed me with. His next question threw my dad and I who was with me for a loop:
“Do you have a boyfriend?”
I replied, “Yes.”
He then told me I had 2 options:
1. Have ablation surgery to remove it.
OR
2. Have a baby and it would go away on its own.
Mind you I was 18 at the time and going to school full time, so I obviously opted to have the surgery, fully trusting a man who finally gave a name to how I have been feeling. A few weeks later, surgery day was finally here. I was so optimistic to finally feel better after years of excruciating pain that I wasn’t even nervous about going under the knife. When I woke up from surgery all I wanted to do was talk to my doctor. When he came over to talk to me I remember him saying “Good news!! You DON’T have Endometriosis.” Most people would be so excited to hear that but I was crushed, because all I wanted was to have a diagnosis to the pain I was in, to know I wasn’t crazy. A few weeks later at my follow up, the only thing I was offered was different birth control and told I was just an “unlucky one.”
For years I went on in pain every month, I tried one more time to go to the OBGYN because I was desperate! He told me that I couldn’t be in that much pain because he checked me for Endometriosis and I didn’t have it. Again, he told me to get pregnant and sent me on my way. I was pissed off, hurt, and felt like no one would ever listen to me, I felt so alone.
Finally one day a friend reached out and told me about this amazing specialist she found for endometriosis. It took me a few months to reach out to him because in the back of my mind I would just have flash backs of, “you DON’T have Endometriosis!” but I couldn’t take it anymore and finally made an appointment. Dr. Heegaard walked into the office and immediately said, “So you 100 percent have Endometriosis, I’m sure of it! Oh and I should probably introduce myself.” A month later I was at the hospital having yet another surgery for a disease I was told I didn’t have. I was nervous but more so then that I was scared, scared he wouldn’t find anything and I would be back to square one. When I woke up from surgery I immediately turned to the recovery nurse and asked her if he found Endometriosis, she replied “Oh honey, he found it! A lot of it! You were in there for 4.5 hours.” Tears streamed down my face, I’ve never felt more validated in my life.
Unfortunately, a year later I was back under the knife for cysts and adhesions. That helped me for a year, but they came back again. This is when Dr. Heegaard decided I needed higher care then what he could provide me. He didn’t want to open me up again and it not help, so he recommended I send my records to the Center for Endometriosis Care in Atlanta. I’ve never respected a doctor as much as him in that moment, for admitting that I needed higher care and to recommend someone that he thought could be better. In January 2018, I flew to Atlanta to have surgery with Dr. Kongoasa at the CEC. I was in surgery for almost 5 hours, had adhesions everywhere, and my organs were all attached to each other. He also found Endometriosis that reoccurred from my last surgery and diagnosed me with stage 4 Endometriosis.
After 3 surgeries (the first one I don’t count) I feel like I FINALLY have my life back! I cried to my dad telling him I finally feel like a normal human being again for the first time since before I got my period for the first time. I no longer have to tell my friends and family I don’t feel good without giving them a reason why, and they no longer think I’m “faking”. After years of thinking that Endometriosis could control my life in every aspect including starting a family we have recently found out we are expecting a baby girl in April 2019. I owe everything to Dr. Heegaard and Dr. Kongoasa and I could never repay them for the life they’ve given me.
— The Minnesota Endo Warriors are proud to share Kate’s endo journey 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
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