First I'll explain what endometriosis is, as I had only a vague idea before being diagnosed.
If you google endometriosis, you'll find the description as "a disorder in which the tissue that usually lines the uterus grows outside the uterus." But what does that actually mean?
Every month a woman of reproductive age has hormones that cause endometrial cells to line the uterus in preparation of pregnancy. The lining of cells is what the egg embeds in after fertilization. When pregnancy does not occur, the cells detach and the woman gets her period. In endometriosis, for one reason or another, the endometrial cells have been introduced elsewhere in the body, usually around other organs in the pelvis.
Because of the nature of the cells, hormone stimulation causes them to line whatever area they can reach. This means normally free-floating organs like the ovaries could be attached to the pelvic wall, or intestines could be surrounded and formed together. Sometimes the cells can be found attached to the diaphragm, lungs, even the brain. But almost all cases are focused on the pelvis and surrounding organs.
Symptoms of endometriosis vary. Some women have really heavy and painful periods. Others have constipation, cramping, pain during intercourse, or just overall discomfort.
My symptoms began years ago, but I ignored them. I was diagnosed with IBS as a teen and most of the symptoms I had were easily explained by that. Until the 5K.
March 18 I started the Lucky Leprechaun 5K. I hadn't run more than two miles in a while, but I was confident I'd be fine. About halfway into the second mile, I started experiencing pain/pressure in my stomach. I chalked it up to needing to go to the bathroom and pushed through. I finished with a terrible time and tried to go to the bathroom with no luck. I drove home, had to take a mid-term on campus, and after another several hours of this horrible pain/pressure, I broke down and went to the ER.
6 hours later I was diagnosed with two cysts on my right ovary, one of which was roughly the size of a chicken egg, and the other about half that size. Best guess was that running caused them to temporarily twist and that caused the pain. I had the cysts removed on April 7th, and from that we learned they were endometriomas, caused by endometriosis.
We won't know the full extent of my diagnosis until I have another laproscopic surgery on June 14. At that point, the specialist will categorize what stage I am at, try to remove the majority of the scarring and endo tissue, heal the lesions caused by the detaching of the endo cells, and remove my fallopian tubes.
In the meantime, I'm uncomfortable. I have some days where I'm totally fine, and others where I can barely think straight. I am literally counting down the days until my next surgery and hoping that this will be the fix I need.
And now for a little fact: 1 in 3 women have endometriosis. And over 40% of them never know. I was diagnosed only because the bouncing of my running caused two organs that had formed together to break apart. It's only in hindsight that I realize I'd been having symptoms for so long and that maybe that could have been avoided. Don't ignore pain because it's embarrassing.
Advocate for yourself. My regular GYN only had 3 options of treatment for me and only one of them didn't result in me going into menopause at 32 years old. I refused to accept that and found a specialist who is dedicated to treating this surgically and with the hope of stopping any further instances.
The more I've learned about endometriosis the more I realize how very lucky I am. This disease causes infertility, and yet I was able to easily conceive and carry two healthy babies to term. I am on message boards with women world-wide that have been diagnosed and the biggest thing that stands out to me is that I'm the exception and not the rule. Most of these women will never be able to conceive naturally, if at all. Yes, having endometriosis sucks, but I acknowledge that it could suck so so much worse.
