Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs. (according to Mayo Clinic).
My best friend Kaylie, who I met through our shared characteristic of possessing chronic illnesses, has endometriosis. I'll be honest – before I really got to know Kaylie, I didn't know much about endo at all. I knew it was much more painful and hard to manage than my own reproductive chronic illness, polycystic ovarian syndrome, but besides that my knowledge on the subject ended there. I kindly asked Kaylie to answer some questions and give some real feedback from a girl, just twenty-one years old, who has been suffering from endometriosis for years.
How do you explain endo to others?
It's very hard to explain endo to other people, especially hard when they aren't disabled or have any chronic illnesses. Often I tell them it's "hell" to your lady parts, it's more than just a period, more than just cramps, it comes with urinary difficulties and pelvic floor issues. Most people who are un-ill people usually nod there shoulders and act like they know what I am saying, but what they don't realize is Endometriosis can cause infertility as well. As a 21 year old, wanting a future family, that's hard to hear and understand. It's easiest to say "it's abdominal pain several days a months (almost everyday) like horrible cramps everyday".
When were you diagnosed with endo? How did you handle the news?
I was diagnosed in November of 2015, at the young age of 19. When I figured out I had it I was actually relieved, I finally had one answer to my 1,000 unanswered questions about my health. We finally had an answer, did I know what exactly Endometriosis was? No, but I quickly learned what it was and what came with it. It was hard to hear the doctor say one of the main things was just pain (that I had been dealing with already) and infertility.
Have you known anyone to think of you differently due to your diagnosis?
I've never been treated differently other than people feeling sorry for me, this illness is nothing I could've ever controlled and it's the cards I've been handed and I deal with, I don't want pity, I would rather people learn what it is & help educate others.
Talk about some of the treatments you've gone through. What worked? What didn't work? Anything you want to try in the future?
Since being diagnosed, I've tried simple things like birth control changes until we could find the right one, which also helps control the Endometriosis from spreading. There are NO CURES for Endometriosis so I am left trying things for pelvic floor issues, such at physical therapy for pain, and spinal injections. Nothing could take the pain 100% away but all of the above definitely have helped, along with ice & heat (TMI). I hope in the future if I can't have kids I would love to try infertility treatments and be able to have children when I'm ready.
Do you have any advice for others suffering from endo?
Pain impacts your body mentally and physically, and if you feel mental issues coming, seek attention immediately. It's nothing to be ashamed of, it's natural, and a lot of people deal with illnesses have mental illnesses. Other advice is relieve stress, anyway you can, stress can make pain 100x's worse. Be open to any type of treatment that your doctor is willing to try, you never know what could work even if it's something simple. Make the diet changes that your doctor recommends... it does make a difference even if it's annoying. Learn to love your best & ice packs. If you are prescribed any medication, take them as told!
