I'm the 1 in 10 with Endometriosis



With the exception of Ryan, my sisters, and closest friends & family, I've never been one to talk about anything medical related, and certainly not my condition which is even more personal than some other issues. 

I have endometriosis. 



What is endometriosis?
Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.


Why am I writing about this?
I'm sharing my story for three reasons. The first reason is that I've read blogs, websites, and magazine articles about other women that suffer from endometriosis and when I've read their story it brings me peace knowing that I'm not alone in this battle. And it helps to know that there is hope and treatment. My biggest inspiration comes from Kelle, the blogger behind Yellow Paper Dress. Her reflections about the disease, photographs, and her personal story brings me comfort in talking openly about it. The second reason is that I'm tired of living with the shame of hiding my condition. I cannot tell you how many times I've had to call-in sick to work and make-up excuses for missing events because every-single-month I'm in too much pain to leave the house. Not only does it cause physical pain, but there is a lot of emotional pain that comes along with hiding the fact that your monthly period is not normal, and you cannot live your life for one week of the month every month. My life revolves around avoiding parties, travel, and any kind of commitment for that one week when I know I'll be suffering. If you wonder what it feels like, read this post. The third reason I'm sharing my story is that there is no cure for endometriosis and there are many girls that are embarrassed (like I was) to talk about their symptoms. As awareness about the condition grows, and when women feel more comfortable talking about their bodies, medical research will be funded and hopefully someday there will be a cure. No more hush-hush about the topic!



My short and sweet story about endometriosis. 
I knew before I met Ryan that I had endometriosis. The endo actually caused me to cancel my first date with him, well kind of cancel. We were planning to go to the Plaza Art Fair, one of my very favorite events in Kansas City. I knew the night before that my period pains were getting worse, and I was actually awake all night from the pain & dread of having to tell him about my period (how embarrassing I thought!). The morning of our date I knew there was absolutely no way I could go on a first date --- walking miles and miles --- with the pain I was experiencing. I don't know what came over me, but I came straight out and told him the truth. I'm sure it went something like "I'm on my period, and I hurt so badly I cannot walk around the plaza all day. How about I just come over to your house and we'll cook dinner together?" He told me to come on over and then he even took me to the store to get Advil (which barely takes the edge off the pain, but I still try every month). I was in the bathroom every hour and I was hurting badly. I spent a lot of time on his sofa that day. Not what you'd imagine as a great first date, but in some ironic why I think being able to openly talk to him about the endo, and see his sweet nurturing side, made me fall in love with him even sooner. Since that day he has been very understanding and supportive. We travel a lot and he knows that we cannot book a trip unless we check my phone P-tracker app because I cannot travel when I'm on my period. We actually did take a trip to California, early in our relationship, and I was nervous I'd start my period while we were there. I thought about canceling the trip, but I was honestly sick and tired of letting it run my life. Well we went, and of course I started my period on the airplane. When we arrived we went straight to San Francisco to see the Golden Gate Bridge. I was hurting and trying to hide it. Then we went to eat by the water, and it was getting worse, but I was still trying to hide it. After lunch he wanted to take me shopping. I remember feeling hot and sweaty from the pain, and I had chills at the same time. Just imagine a hot curling iron inside your pelvic area, along with stabbing pains that feel like someone is cutting you from the inside out. I simply could not walk another step, as the pain was radiating down my legs. I think I started to cry, not only from the way I felt physically but also the pure disappointment of having to say "take me to the hotel room!" As always, he was beyond understanding, he was kind, loving and nurturing. Any guilt I felt about having to cancel a day of exploring the beautiful area, he took away, and made me feel safe and loved. I called my mom the next day to tell her about it. I also told her about Ryan putting wet towels in the microwave to put on my abdomen. I think she fell in love with him after that story. Since then we have avoided travel during my period because sad but true it DOES RUN MY LIFE! 
One of the scary issues that comes along with endometriosis is FERTILITY! Quite frankly endo makes it difficult to get pregnant. All that scar tissue blocks pregnancy. We've talked about having babies from the very beginning. I've dreamed of being a mom since I was five years old. When I first found out I had cysts on my ovaries (a common condition for endo) I thought I'd have to have surgery right away. Fortunately, my doctor told me I could wait until I was ready to have a baby because the best time to get pregnant is right after surgery when all the cysts and scar tissue have been removed, because it will come back. 
Here we are newlyweds and it is time for me to have laparoscopy. I just had my pre-op appointment today and I should have my surgery scheduled by mid-week. I hope we can do it early November. I'm equally nervous and excited about the surgery! One week after the surgery we'll have a post-op meeting with my doctor and we'll discuss the next steps to pregnancy. Many times the laparoscopy is all that is needed for women with endometriosis. I hope and pray that is all that we'll need and that we can have a baby in 2016! 

The ROSE Project --- exciting things are happening for endometriosis. 




Endometriosis Sources & Articles:

Endometriosis Foundation of America, founded by Padma Lakshmi the host of Bravo's Emmy award winning "Top Chef" 

People article Dancing with the Stars' Julianne Hough: 'I Was Really Scared'

My favorite blogger on the topic, Kelle, openly talks about her Endo on Yellow Paper Dress 

Thanks for reading my story. Someday I'll share more details about the condition because it's more than just pain, but for now, I'm going to focus on laparoscopy and pregnancy! 

xo Wen
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Wendy Correen Smith
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