Endometriosis: Beyond “Bad Cramps”
What is Endometriosis? Endometriosis is a systemic inflammatory disease where tissue similar to the lining of the uterus (the endometrium) grows in other parts of the body. Key Facts & Statistics Common Symptoms How to Talk to Your Doctor Navigating medical appointments can be daunting. Use these strategies to ensure your concerns are heard and documented. How to Be an Ally
Endometriosis Journey Testimony- Sara R.
1999- 12 years old I started my period and I didn’t understand why I was in so much pain. Everyone kept telling me it was “normal” and that every woman deals with this. Basically just suck it up because you aren’t special and “it’s just part of being a woman”. Some welcome to womanhood, huh? 2001-2002- 14-15 years old During this time, I learned what Endometriosis was through a close friend who was newly diagnosed. Since this was the time of “Ask Jeeves”, I asked and started researching. This was my first time going to a gynecologist. Of course, insurance wouldn’t approve the laparoscopic surgery to confirm a diagnosis. So we decided to skip to what the doctor’s “treatment” would be if we did the surgery and it was confirmed just to see if that would improve symptoms. The doctor wanted to put me on Depo Lupron shots but I didn’t feel comfortable with that. I’m so grateful I listened to my gut on that one. The Lupron shot was originally created as a treatment for men with prostate cancer. The side effects are HORRIBLE and some even last a lifetime. Not saying that birth control was much better but here we are. This is when my long journey of birth control pills began. Eventually the decision was made to forgo having monthly periods and instead have 2 planned periods a year. Basically, a chemically induced menopause. I had all the symptoms of menopause at 15. It was scary and none of my friends could understand or relate. I remember having hot flashes so bad I would lay on the linoleum floor in my bathroom with a spray bottle of water fanning myself. All while I was crying because I truly didn’t understand what was happening to my body. Despite those 2 periods a year being “planned” and “controlled”, they were still too painful, and I was too sick to function. This led to the decision to take birth control pills constantly without any periods at all. I remember when I was 15, my parents took me to my gynecologist appointment. After the exam, he brought us all into his office to talk about the next steps. The only thing I remember from that conversation was the doctor saying that if I didn’t have a child now (at 15 years old), then I would never have the chance. I never really saw myself having kids when I pictured my future as a child. But this really solidified that for me. Having children was just one of those things that wasn’t going to be part of my plans and for me that was the least of my worries. 2003- 16 years old This was one of the hardest years of my journey. I remember only making it to school 19 days in my first semester. I still did all of the work and managed to make the high honor roll, but my teachers and counselors were so angry. It truly felt like I was deathly ill. I wouldn’t have wished that upon my worst enemy. I was able to get my school to agree to home teaching with input from my doctor. Having access to home teaching my junior year was such a relief. One less thing I had to worry about or so I thought. 2004-2005- 17-18 years old I was still sick constantly from the pain. Until this point in my life, I never knew pain could make you physically ill. I felt like no one believed me. I just kept hearing things like: “You’re crazy”, “You’re being dramatic, every woman deals with this, it’s normal”, “You just have anxiety”, and best for last “Get over it”! This was my senior year of high school. My school administration took away my home teaching services because the pregnant girls needed it more than I did. Gotta love supporting teen pregnancy. I was so upset that after all this time and all my hard work, my school couldn’t even support me. It felt like my entire community was failing me from school to friends to family. I was devastated. Just 3 months before [what should have been] my graduation, I dropped out of high school. I just didn’t know what other options I had at the time. If only online school was a thing at that point, things would have been far different for me. Instead I ended up doing a homeschool program that I paid for myself. I still graduated in 2005 but I missed out on all of the things my friends and my classmates got to do that year. 2005-2008- 18-21 years old This was the period of my life where I genuinely tried to gaslight myself into thinking all this pain was in my head and it never actually existed. That’s all I kept hearing from everyone around me that I was supposed to trust, respect and hold in high regard. Needless to say, the pain continued and I had no support so I just kept quiet and internalized the struggle. 2009- 22 years old In February 2009, I joined the Army National Guard. This was also the year I had my first “endometriosis surgery”. This was supposed to be a diagnostic laparoscopy. I was told it would be an easy procedure and recovery would be quick. Nothing could be further from the truth. This surgery was done by an OBGYN who had ZERO business even pretending like he knew even the slightest thing about Endometriosis. But at this point, I just assumed doctors knew best. Boy was I wrong. This surgeon did the normal 4-5 incisions about an inch or less and in all the right spots. But under the skin, he cut through muscles and created an even worse situation. He did however confirm that I had endometriosis. So I guess that was the positive out of a bad situation. I had no idea why I went from being in the best shape of