The Endometriosis Association began Endometriosis Awareness Month in 1993. It's now observed worldwide through activities such as education, fundraising, and marches. Yellow is the international awareness color for endometriosis, this is because in 1980 the first brochures about the illness were, you guessed it, yellow. In honor of being 1 in 10, in honor of all of those who suffer with endometriosis, I share with you, my journey with endometriosis with a brief highlight into my diagnosis, treatment trials, surgery, mental health struggles, and how I learned to truly live with an invisible illness.
For those who aren’t familiar, endometriosis, or endo for short, can cause painful periods, irregular periods, pain during and after sex, irregular bleeding, digestive and gastrointestinal problems, infertility, anxiety, depression, fatigue, irritability, among other symptoms. Endometriosis is a painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus, the endometrium, grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes, the tissue lining your pelvis, however can also have an impact or on take over other organs as well.
I don’t know my diagnosis date; I do know I was in 7th grade or so when it was first discussed and I learned what it was. I was diagnosed via a laparoscopy, maybe a year or two later, around age 14. Due to a family history of endometriosis, my mom was on my side pushing to get answers, and to either rule in, or out, a diagnosis. I was diagnosed sooner and earlier than most thanks to her own personal knowledge and support. It typically takes 10 years for a woman to get a diagnosis of endometriosis, and one in ten women have the chronic illness.
I have had several operations for my endometriosis, each helped for a period of time. It’s inevitable that there will be more in the future, or I may have to strongly consider a hysterectomy down the road. Though it’s not a cure, many women have had relief and success after their full hysterectomy. I’ve tried and failed numerous medications that are supposed to help, or suppress pain and symptoms, for me either I have a reaction to the medication or it doesn’t do a thing to help. I’m not about putting medication into my body if I don’t need too, so I refuse to take something for the heck of it. I have also tried, and failed medication trials.
I have tried just about everything, what helps me the most, is staying active, staying positive, and focusing on everything else in my life, not letting endo control me, I have learned to control it. Yes, there are days when I’m in excruciating pain, but I hide it well and go about my day. Life is too short; I choose to live it. It’s extremely easy to fall back on it as an excuse, however that excuse stops us from living. I’d rather live-in discomfort than not live at all. Mind over matter is something I learned early on in life, mental toughness helps me get through daily. On top of my endometriosis diagnosis, I also carry with me the diagnosis of fibromyalgia, degenerative disk disease, arthritis, chronic migraine, and irritable bowl syndrome. Keeping active, movement every day, practicing gratitude, and keeping as positive as humanly possible allows me to live my life to the fullest each and every day.
The biggest mental toll that this disease has had on me, is the inability to have children. I was told at age 14 that I have a 40% chance, and as I got older, that number declined. I always prayed for a rainbow baby, now I grieve the baby I never got to have or hold. It’s a battle that I have dealt with since I was 14, but one I am slowly learning to be okay with, and not let control me either. Life is beautiful, and everything happens for a reason. One of the things I wish others understood, was that they can’t understand unless they struggle with the exact issue, it’s worse when they say they understand but they have children. I also struggle to tell people when I’m struggling from pain, and I sometimes push myself into a worse flare. I wish people understood the physical and mental toll the illness can have on a person, educate themselves, rather than make assumptions.
If you have endometriosis, how do you cope and manage in order to live life? I'd love to hear in the comments!