Awareness

I have been debating for a while now on whether or not to write about this and I finally decided it was important to share. I am not shy about sharing this with people but it's personal and a lot of people don't like to hear about "girl problems." I have been struggling with endometriosis since I was 15.

For those of you who aren't familiar with endometriosis, here's a nice lengthy medical explanation for you:

During monthly menstruation, the female body sheds the endometrium - uterine lining - in the process commonly known as a "period". In women and girls who have endometriosis, some of these menstrual fluids are retained in the body and abnormally implant in areas outside of the uterus. These implants, or nodules, eventually accumulate on the bladder, bowel, ovaries, cul de sac, and other nearby organs, leading to the development of adhesions, scarring and invasive nodules. This can cause symptoms that vary from painful periods, chronic pelvic pain, infertility, pain associated with intercourse and sexual activity to painful bowel movements, rectal pain and urinary pain or difficulty.

My journey began my sophomore year of high school when I started to have extreme pain in the right side of my abdomen. Sometimes it came during my period, sometimes it just came. The pain was excruciating. I used to explain it to my mom as being stabbed constantly with a thousand little knives. The pain was so bad I would often throw up, be immobilized and sometimes be on the verge of fainting (luckily I never actually fainted, but boy would I get light headed).

Thankfully, my mom was smart enough to realize that this pain wasn't just "bad cramps." She brought me to the gynecologist to get checked out. My doctor first put me on birth control, the common "fix" for really bad period cramps, but she was also diligent enough to do other tests (something I have been learning is rare). She did an ultrasound to see if maybe I had a cyst. I was cyst free. After a few months on birth control the pain was not subsiding, Dr. Song (who is AMAZING) then informed me of the possibility of endometriosis. Unfortunately, there is only one way to correctly diagnose endometriosis, and that is via laparoscopy (a surgery that uses a thin, lighted tube put through an incision in the belly to look at the abdominal organs). The thought of surgery scared the crap out of me, but the thought of continuing with the pain scared me even more. Dr. Song performed a laparoscopy and determined that I did in fact have nodules on the right side of my uterus. While performing the surgery Dr. Song was able to cauterize the visible cells in hope of completely removing the endometriosis.

For months after the surgery I felt great! But then, the pain came back. Turns out those damn cells can be so small that the doctors can't see them, so even though Dr. Song removed everything she could see....there were still more. Apart from a laparoscopy, endometriosis can be cured by a hysterectomy or hormonal treatments. Since there was no way in hell I was having a hysterectomy at 16 years old, I opted for the hormonal treatment. Every month for six months I received a shot of Luron, which is a hormone that puts your body through menopause. That's right girls, I've been through menopause, TWICE!

Let me get off topic for one second and say, IT'S NOT THAT BAD! So all you women going through it....stop your moaning! There's no reason why you can't go through menopause gracefully without announcing every hot flash you have. One. of. my. biggest. pet. peeves!

Anyways, I felt GREAT on the Lupron! No cramps, no PMS, no zits, nada! It was amazing! The shots sucked in a big way....but they made me feel great! For nearly two years after the shots I felt amazing and had no pain. Then, my freshman year of college the pain returned, and I once again did the Lupron shots. Let me just tell you that sitting in a crowded lecture hall in the middle of winter when everyone is wearing layers and I am in a tank top because of hot flashes is one of my favorite college memories. Favorite in the sense that it was ridiculous, not in the sense that it happened (my college life was not that lame).

Ever since the second round of Lupron shots, I have been doing great. There have been 4 or 5 occasions where I experienced extreme pain again, and then usually around the time of my period I get a sort of numb pain in my right side, but other than that I've been good.

The problem is, a common myth about endometriosis is that the more cells that are accumulated the more pain you feel, but actually any amount of endometriosis can cause pain and likewise a higher stage may cause little to no symptoms. So just because there's no pain, doesn't mean it's not there. This is the exact reason I felt I needed to write this post.

Here's some facts for you:

*Approximately 176 million women & girls worldwide suffer from endometriosis, 8.5 million Americans alone!

*Most women suffer pain and present symptoms for up to a full decade prior to diagnosis, the average diagnostic delay is 12 years!

*The average woman is 27 when she is first diagnosed

*Endometriosis is one of the top three causes of female infertility. While it us one of the most treatable it remains the least treated! :(

*Many infertile women with endometriosis experienced debilitating painful periods as teenagers but were misdiagnosed

My point is that this is a HUGE problem and up until I had it, I had never even heard about it. Without an incredible mom and an incredible doctor I may have gone on thinking I had bad cramps, and who knows how bad it would be now. According to my doctor I should not have problems conceiving, but until I try I won't know. Imagine the conversation I had to have with J while we were dating, informing him that there is a chance I couldn't have kids. Thankfully, J is amazing and loves me and simply answered me with "then we'll adopt." But, I am lucky that I was educated enough about the disease and I knew that I had it, so that I was able to have that conversation. Many women don't know they have endometriosis until they can't conceive. Remember that stat: "Endometriosis is one of the top three causes of female infetrility. While it is one of most treatable it remains the most untreated!"

There needs to be education on endometriosis! I think it should be added to the Sexual Education program in schools. When girls are learning about menstruation they should be learning about endometriosis! Yes, periods can be painful and uncomfortable but not to the point where you're throwing up and can't move. Parents, teachers and even doctors need to be aware of the symptoms and severity of the disease so it can be treated early on, before it becomes a life changing problem.

I was thrilled when I heard of celebrities such as Julianne Hough, Padma Lakshmi and Jillian Michaels coming out and publicly sharing their experiences with endometriosis.

In fact, Padma was so passionate about spreading awareness she co-founded The Endometriosis Foundation of America.

The Endometriosis Foundation of America is a nonprofit organization focused on fighting against the devastating effects of a disease that affects millions of women and adolescent girls. Through increased awareness, education, research and legislative advocacy, the EFA is committed to improving affected individuals' lives by early detection and treatment.

Ladies, please be aware of this disease and educate yourself. Our generation needs to spread the word so we can protect ourselves and our daughters!