Monday, March 28, 2011

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 misdiagnose
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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!

11 comments:

Megan said...

This is such good information. Thanks for sharing. I cannot believe how common it really is, once people realize that is what is going on with their bodies and not just bad cramps!

Miranda Kaye said...

Hey, I used to have endo.. I was young probably around 12 and it came once a month, I would get really really sick and had major pain on my right side, I was taken to the hospital and they thought it was appendicitis but then decided that it was probably just my period starting. Luckily once I got on birth control it stopped. Haven't had any problems since. I'm so glad you're feeling better because it's AWFUL. Thank you for bringing this subject to light.

Laura said...

wow!! i never knew all of this!! i can't believe how common it is.. and how people don't even realize what they have!! I'm so glad you shared this!- I hope you continue to be pain free. Hopefully they will come out with something that is even a step up from the shots you've taken one of these days :)

Jessica said...

I had no idea you had this! I'm glad that you are feeling better after the second round of shots.

This makes you the second blogger I know with this condition, a condition that I had never heard of before entering the blog world!

Miss K said...

Great post and thank you for sharing. I've heard of it before , but didn't understand what it was.

Maura said...

wow great post. i think it's really amazing that you shared this every woman needs to be educated on this!

Carolyn said...

Good job BB! :)

undomestic chica said...

Thank you for sharing this! I know quite a few women with Endo and they always talk about how uneducated the rest of us are about it.

Tucker said...

Thanks for sharing! what an eye-opening post. despite working in the cardiac wing of a hospital, i really don't know much about this.

I'm so sorry you've had to experience so much pain because of it. But thanks for informing all of us!!

Kailey said...

OMG thank you for posting this!!! I have been researching the internet like crazy about this and this is the first time I've heard of someone having the same symptoms as me. I faint nearly every period from pain and throw up every time. I try to go to class and someone has to come get me and help me get home because I can't move. The doctor gave me BC and it hasn't helped. She brought up your diagnosis but said she wasn't going to test me for it because it is rare. This has disrupted my life so much and everyone tells me I'm just sensitive, everyone has period cramps. I will definitely demand to be tested. THANK YOU

Amanda said...

As someone that is struggling with getting pregnant because of Eyndo, I appreciate your post! I do not think I could put my entire story out there like you did and for that I thank you. I’ve had the surgery, I’ve had Lupron (the first two weeks and coming off of it was WAY worse than the actual menopause symptoms…so I agree about women announcing their hot flashes) and I’ve been hospitalized so many times that the ER doctors know my name by heart and just call the admitting doctor before they even come say Hi. It took 10 years of this before they figured out what was going on. I was far from fun, and something I wish I’d heard about growing up. Great post!!