Its March and month long, all of Instagram, Facebook and Twitter has been awash of yellow- full endometriosis awareness posts. If you didn’t know, March is endometriosis awareness month and every year; my endo sisters and I take to sharing more about the devastating disease that for many of us controls and ruins our lives.
Endometriosis (en-doe-me-tree-O-sis) is an often-painful disorder where tissue that normally lines the inside of your uterus called the endometrium, grows outside your uterus. Generally, endometriosis is found in the pelvic cavity where can attach to any of the female reproductive organs like the uterus, fallopian tubes, ovaries or on the uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus/vagina, and rectum. Endometriosis can also be found on the bladder, bowel, intestines, appendix or rectum.
Common symptoms of endo are the horrible “Killer cramps”, pain that effects daily life not just during your period, bloating known as the “endo belly”, long periods with heavy menstrual flow, wacky periods with irregular schedules, bowel disorders like IBS, nausea and/or vomiting, pain during sex which is particularly heartbreaking, infertility and chronic fatigue.
The only way to be diagnosed is with a Laparoscopy. I had mine on July 7th, 2013- 5 years ago. Its mind boggling to thing of the things I’ve undergone in those five years when it comes to this illness.
The biggest thing is I learned I wasn’t a failure as a woman. When I started my period at the fresh-faced age of 12 I was suddenly side lined with horrible symptoms and terrible debilitating pain that ruined my life. My moms mother (whom we are estranged from for sooooo many reasons like this) said it was just what women go through and that I needed to “suck it up and stop being so weak” so I did. I suffered in silence for years. Then, when I was in college and I had a found a someone, I discovered that sex was very painful. And I was scared I was broken. Having that intimate moment ruined by gut wrenching pain is devastating. I was still having these debilitating periods and now I was stating to have daily pain and it made sex was a nightmare.
I told a PA in my gynecologist’s office she dismissed it and told me to do Kegels and take Motrin. I remember the defeat as I rode the bus home. The tears behind my sunglasses. But like so many times before I sucked it up.
Then came July 4th. It was my turning point. I had been bleeding for about 12 days. I wasn’t eating because everything made me run straight to the bathroom and that was incredibly painful. I wasn’t drinking because when my bladder would fill up it hurt. But, I sucked it up and helped at my family’s barbeque. It was so hot that day – 110* and I could barely walk. I was so woozy. I passed out carrying a tray of food and My parents called an ambulance.
I was rushed to the hospital and admitted. Dehydrated, scared and in pain, my regular gynecologist came to see me. I couldn’t suck it any longer. I sat and cried to him. Telling him about the years of pain. About how no one listened to me. About sucking it up and how weak I was because I couldn’t.
He stabilized me over the next few days and scheduled a Laparoscopy. I finally had my answer. I wasn’t weak- I was sick. Stage 3 endometriosis. When he told me, I had a flood of emotions- angry, sad, confusion, hurt, relief. Loads of relief.
A treatment plan was put into place and it’s been difficult road the last 5 years. I’ve tried some treatments that made everything worse (Lupron) and some that have helped. I’m still learning how to manage this illness. How to listen to my body when it needs rest, to fuel it properly to avoid flares, how to properly advocate for my own care and be a part of my health care team. But I no longer feel like I am less of a woman. I’m a warrior. I am one in 10 women who suffer from endometriosis.
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