I was diagnosed with Endometriosis in July 2016 at age 25 when I had surgery to have it removed, but my story does not start there.
When I was 14, my parents took me to a doctor because of painful periods. We were told that my painful periods were normal which unfortunately, is common for women who have endometriosis to hear. The pain was so bad I used to lay in the fetal position and cry hoping the ibuprofen or heating pad would work. I went to the doctor a few more times and they put me on birth control to help my painful periods, but they still told me its normal for women to feel pain. The birth control helped a little until it didn’t anymore.
In my late teens and early 20s, I began losing a lot of weight. I had really bad stomach pains and was regularly nauseous. When I was 16 or 17 I was a healthy 125 pounds, but the day I went in for my surgery for endometriosis when I was 25 I was down to 93 pounds… and I’m 5’6. I always complained to my doctors about this, but most did not take it seriously and just said I had a really fast metabolism and they believed my nausea was acid reflux. I took Omeprazole but it didn’t really do anything. One of my doctors even told me to just eat ice cream every day to gain weight. It was also actually pretty common for people who barely knew me to ask me if I had an eating disorder which was hurtful & annoying.
So, for 11 years, I was searching for answers to no avail. Everything got worse for me at ages 24 & 25, I was sick almost every day and I cannot count how many times I ended up in the ER so I decided to find a new doctor and try to get an answer. This is when I found my new primary doctor and I am so grateful for him. The first time I went in he told me there was definitely something going on and he wouldn’t quit until we found an answer. But, I had never heard of endometriosis and I was told my painful periods are normal from other doctors so I didn’t tell him about that. I just told him I was having horrible stomach pains and getting nauseous all the time and most of the time I couldn’t stand up straight because my stomach hurt so bad. I couldn’t make it through a day of work without ibuprofen & Pepto-Bismol and once I got home, I would drop & had no energy left.
My new primary care doctor checked for gallstones and when that came back normal he checked my kidneys, my liver, and did ultrasounds, bloodwork, took urine, and other tests. Everything was normal. He put me on some sort of medication that I can’t remember the name of now to see if that would help with my stomach pain and nausea. It didn’t. So, then I was back for more bloodwork and another ultrasound and everything came back normal. Then he wanted to rule out ulcers, so he had me go in for an endoscopy where they put a camera down your throat to your stomach and take a sample. He told me there were no ulcers but that there was damage to my stomach that is linked to taking too much ibuprofen. I told him while on my period especially, I take around 18-24 ibuprofen a day because the pain is so bad. For some reason I had it in my head that ibuprofen was safe no matter how much you take. BIG MISTAKE! Right away he said, “I think you have endometriosis.” He explained to me what it was because I had never heard of it before and referred me to a gynecologist. I was so relieved to finally have an answer but a little irritated that a primary care doctor is the one who realized I might have this disease and not the numerous gynecologists I’ve gone to in the past.
I went to the gynecologist he referred me to, but we had disagreements over my treatment plan. She didn’t want to do surgery because she didn’t think my endometriosis was severe enough to need surgery. My dad was the one who found Dr. Eric Heegaard and I set up an appointment. I met with him, told him all my symptoms, he looked at my medical records and said he was 100% certain I have endometriosis. He did my surgery and found that I had stage 3 endometriosis. I had it all over my reproductive system as well as my bladder, urethra, and I had extensive bowel endometriosis. He said it was so extensive he had to go slow because it was so thick and difficult to tell where the healthy tissue was. I am so grateful to my primary care doctor and Dr. Heegaard because I have my life back. One positive is that I can finally eat now without getting sick and within 6 months of my surgery I gained 30 (much needed) pounds and I look healthy again. I have bad days every once in a while but I finally feel normal.
I have a newfound love of hiking and my fiancé and I go hiking whenever we can and travel. I don’t take my “freedom” from this chronic illness for granted. I am hoping by sharing my story it raises awareness because I and many women have never heard of this disease before and 1 in 10 women have it. When I went to gynecologists it was common for me to be told “Well maybe you just have a low pain tolerance.” I recommend seeing a new doctor if you are told this and not being heard. I also hope my story gives women hope. When I was trying to find answers and even shortly after my diagnosis I had no hope and I used to cry. I almost said, “screw it” and gave up. But when my dad told me about Dr. Heegaard and I read testimonials, I decided to try again and I’m glad I did. I still have bad days but this is the best I’ve felt in over 10 years. There are groups online that keep my spirits up and don’t make me feel alone and I also have an amazing family and fiancé, Mike, that support me. So long story short, research endometriosis because 1 in 10 women have it, research doctors who specialize in endometriosis because not all gynecologists know enough about it, find support whether its family, friends, or support groups, and please don’t give up hope.
— The Minnesota Endo Warriors are honored share Kara’s 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