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How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
I never received an official diagnosis, both my mother and grandmother have endometriosis and, especially in my mother’s case, has impacted their lives heavily. I was around 13 years old when my symptoms first started, about a year after my first period. I was in band through out middle and high school, and in 8th grade I was a part of my schools pep band. Before the game even started I was in agonizing pain. The cramps I was feeling were like lightning shooting through my body. I could hardly stand, a friend helped me to the hallway where I sat until my mom came and picked me up. I had no idea what endo was at the time, and never thought it to be a possibility. After explaining to my mom what happened she explained to me what endo was and how I might have it. Ever since those first symptoms my periods only became worse as the years went on. Even though I have never been officially diagnosed, especially because to be diagnosed it usually requires a very invasive surgery, all my symptoms from the past 5 years have all matched to endometriosis.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
The first few years were bearable, I only missed school occasionally and ibuprofen would usually help. But as I got into high school my cramps only became worse. Ibuprofen no longer helped, I had to move on to taking max doses of Aleve that would only help to a certain extent. I usually took about four ibuprofen on top of the Aleve just to function at all during the first three days of my period. The best way I can describe these cramps are like if someone took a hot flaming knife and stuck it up your butt. Not the prettiest description but you get the point. I could hardly move when I got these, I lost sleep, had to skip school, call out of work. It was horrendous, and being what it was, I felt like I couldn’t tell anyone about it. It was embarrassing to admit my period was taking over my life. I would get cramps outside of my period as well, something I still struggle with, during ovulation especially. I have extreme fatigue as well, it being hard to focus or go to work when it hits. I also feel incredibly nauseas on my period, sometimes even throwing up meals if it’s extremely bad. All these things combined led to me missing out at school, cancelling plans, having to sit out during practice, and overall ruled over my life for a good period of time. My junior year and beginning of senior year were especially difficult, that’s when I started seeking out help.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Yes, absolutely. It really brought me down for a while. My symptoms caused me to miss out on a lot, my studies, my work, my friend's. Communicating why I had to miss out on things to my teachers and managers was hard, especially because I felt embarrassed to say anything. It’s hard for people to understand, especially when endometriosis is not very well known despite how common it is. Being so young with these symptoms I remember feeling so alone, I felt like I couldn’t talk about it with anyone besides my mom. Which is why I feel compelled to share this, because I wish when I was young to see these stories and know I’m not alone, and that other people are like me and understand.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
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Yes, my mom is my biggest supporter, she supports me on my bad days, has helped me find treatments that have helped. My friends are also incredibly supportive, they’ve seen my on some of my bad days and have helped me by taking me home, getting me medicine, grabbing a heating pad, or just giving me a hug. I’m very grateful I have people around me that understand and try to help me when I need it. My boyfriend is also incredibly supportive, he knows when I’m struggling, and he has brought me food, bought me a heating pad, and laid with me while I nap, and overall just incredibly supportive. I couldn’t be more grateful for all the support and love of the people around me. Without them, I don’t know what I would do.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
It’s pretty good, I’m not exactly sure what this treatment is called, it’s not well known, but I get shots every 4-6 months that help with cramps and overall heaviness of my period. My mom introduced them to me during the middle of senior year. They’ve helped a ton. They have helped me use less medication while on my period, have lightened it, and have shortened it by 2 days. They’ve really helped me start living a better life. It doesn’t completely alleviate the pain, I still take painkillers and use my heating pads while on my period. I’ve also found that exercising helps with the cramps and fatigue. As for the nausea, I usually try to let it pass, I’ll usually drink ginger ale to help settle my stomach.
What do you wish you knew earlier in your journey?
That having a period be heavy, painful, and cause you to miss out on the things you love IS NOT NORMAL. Periods should not run your life, you should not have to lay in bed because of it. There is help and treatments out there and you are not alone in this.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
It’s helped me feel validated, knowing my pain is seen and heard. I thought I was crazy for years and felt so alone and embarrassed to share I was suffering. This community has helped me tremendously in accepting my pain and working towards bettering my life and seeking help and treatment.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
You are not alone, it will be hard and scary sometimes and it won’t be easy. But never stop fighting for your life. You know your pain and you know your body. Never ever let someone tell you what you are or not feeling.