Thursday, April 3, 2014

ENDOMETRIOSIS

March is National Endometriosis Awareness Month and I wanted to use it as an opportunity to share my journey with the disease and also do my part to raise awareness - of course I couldn't get my act together enough to write this during Endometriosis Awareness Month, but I'm close enough right?
For those of you who are unfamiliar with endometriosis....time to get educated! This is a disease that affects 176 million women worldwide {aka 10% of women in their reproductive years, aka A LOT} and the lack of knowledge that women have on endometriosis is frightening. So do me, yourself, your daughters, sisters and friends a favor and read this.

Let's start with a nice lengthy explanation compliments of WomensHealth.gov:

Endometriosis gets it's name from "endometrium" which is the tissue that lines the uterus. During your period, this tissue comes out but in the instance of endometriosis it instead grows outside of the uterus on other organs or structures in the body.  The most common symptom of endometriosis is pain in the lower abdomen or pelvis, or the lower back, mainly during menstrual periods. The amount of pain a woman feels does not depend on how much endometriosis she has. Some women have no pain, even though their disease affects large areas. Other women with endometriosis have severe pain even though they have only a few small growths. Other symptoms may include chronic pain in the lower back, pain during or after sex, intestinal pain, painful bowel movements or urination, spotting or bleeding between periods, infertility, fatigue.
via

I have been struggling with endometriosis since I was 15. 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" and 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 since learned 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, My doctor (fun fact: same doctor to deliver Kenley) 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).
via
 The thought of surgery scared the crap out of me, but the thought of continuing with the pain scared me even more. My doctor performed a laparoscopy and determined that I did in fact have nodules on the right side of my uterus. While performing the surgery she was able to cauterize the visible cells in hopes 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 my doctor 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 Lupron, which is a hormone that puts your body through menopause. That's right girls, I've been through menopause {twice!}.

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 a college memory I will never forget.

Ever since the second round of Lupron shots (in 2008), I have been doing great. There have been occasions where I have experienced extreme pain again, but it's been random and not severe enough where I've felt the need to seek help. Usually around the time of my period I get a sort of numb pain in my right side, sort of an annoying reminder, but I don't know for sure if that feeling is from endometriosis that still exists in there or if it's the scar tissue from my surgery. The scar tissue definitely gave me some trouble during pregnancy because as I grew the tissue stretched - so imagine round ligament pain on steroids...not fun.
After my surgery, my doctor told me I shouldn't have problems conceiving, but until I tried I wouldn't know. Imagine the conversations I had to have with my boyfriends as a young adult explaining that I may or may not be able to have babies. Thankfully, Jason is amazing and loves me unconditionally and simply answered me with "then we'll adopt." Thankfully we were blessed with our Kenley but I am lucky that I was educated enough about the disease and 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. In fact, endometriosis is one of the top three causes of female infertility. While it is one of most treatable it remains the most untreated!
Up until I had it, I had never even heard about endometriosis and to this day when I tell people I have it, they have no idea what I'm talking about! 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 have gotten. There needs to be education on endometriosis! I think it should be added to the Sexual Education programs 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 strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Engaged in a robust campaign to inform both the medical community and the public, the EFA places particular emphasis on the critical importance of early diagnosis and effective intervention while simultaneously providing education to the next generation of medical professionals and their patients.

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





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24 comments:

P!nky said...

WOW, lady, wow. I've heard of Endometriosis, but never knew what it was. I'm glad you are okay and everything worked well for you :) Thanks for informing us.

Jess Beer said...

Great explanation of your journey! I'm so thankful it didn't affect your ability to conceive Kenley!

Cayla said...

Thank you so much for sharing this! I too have this, as does almost every female on my mom's side, and it's a nagging thing in the back of my head as we try to do this whole "baby" thing. I told my husband on our 3rd date and he was just as supportive as Jason was, thank gosh! So nice to finally hear people talk about it :)

Becky Borgman said...

Thank you SOOO much for sharing this, Kristin! I had surgery to correct a blocked tube and during that surgery it was discovered I had endometriosis as well. I had no symptoms or reason to think I had it, but it was surely contributing my my infertility struggle.

Dawn said...

Thanks for sharing your story, Kristin! I have a few friends that have gone through the same thing. Early detection and awareness is key!!

Jessica said...

Thank you for sharing this, sweet girl! I had no idea you struggled with this. So glad you were able to conceive Kenley, and will hopefully be able to add to your brood one day with no problems!

Bridget said...

Thank you for sharing your story. I grew up with the most horrible cramps ever! On the floor in the fetal position crying because they hurt so bad. Birth control made mine better. After getting off bc a few years ago, cramps came back but not as bad as they were in high school. Thank gosh. I'm glad to know you are doing well with it now.

Hope @ Hope in a Blog said...

Wow...Glory to God you have your precious baby. I have Crohn's Disease (totally different than Endometriosis) but I have been faced with a fear of conception as well...I obviously won't know until I try either, but your story is definitely one of hope for many! Xx.

Carolyn said...

Love love love this! Not the stupid endo part, but how passionate you are, and that you're educating people!! :) Go you!

Melissa @ i carry your heart said...

Awesome post. I had a very minimal understanding of it, but I learned a lot! Can't imagine going through the menopause stuff! So, will you still go through it in your later years as well? So happy for you that you've gotten to experience pregnancy and being a mom. I'm sure that gives a lot of hope to others who have been diagnosed and fear they will never be able to experience those things!

Michelle Levine said...

wow i totally was unaware about the symptoms and details of the disease - thanks for sharing your experience !

Anonymous said...

Good job spreading awareness my dear. I am so thankful that your spiders did not keep you from Kenley Mou. Well done! xo m

MIL said...

I'm a lil late on your blog lately but I gotta comment...you are sooo smart and to make aware to young women of this. Good job! AND I love reading the other stories of life experiences. BUT I really love seeing your trip to your mom & Steve's place in AZ. Gosh it is beautiful! Kenley looked so dang cute. The one picture with Sherri, she looked like J to me. It is so wonderful & fortunate you get to do that with your mom, kudos to Steve to have an awesome winter home since it sucks here. AND like Carolyn, arrange a bunch of us to go next time! HA!HA! Miss you! Love you very much!

Ashley @ Life on the Parsons Farm said...

Thank you for sharing about this. I too suffered from endometriosis but unknowingly until I had my first pregnancy/miscarriage/ectopic pregnancy. Since my fallopian tube ruptured I had to have surgery where my doctor found endometriosis and removed as much as she could for me.

In all of our infertility treatments and appointments I am not sure if we ever even discussed the possibility of endometriosis. Since my surgery in 2010 my periods have been more "normal" and nearly absent of pain.

I pledge to share more about endometriosis in my classes as I am a Health Teacher!!

atparsons.blogspot.com

Courtney B said...

Thank you for posting this!! I know so many women who suffer from this but I've never taken the time to really educate myself on this. It sounds horrible but thank goodness for those shots! I didn't know that was an option. Is there a risk of conceiving being harder because of the shots? Either way, I'm sooooo happy they have given you relief AND that you have your sweet Kenley girl!

Kristin said...

I too have it, used to faint monthly from it. Still no luck on the baby making :( Thank you for your post

ajs {of MN} said...

thank you for this post! i recently just learned about a friend having this and wasn't really sure what that meant and not too sure about how to react when she told me. she was so casual about it.

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