Friday, March 4, 2016

Ashley's Story - Endometriosis Awareness Week 2016

I put the call out to "Powerful Endo Women" on Facebook, looking for anyone who would be willing to share their story. I am so grateful that Ashley answered that call!  Her story is so powerful and hinges on her desire to help others with this disease not feel as alone as she did.

I truly believe that we all have a story to tell, and that as long as we are honest open and willing, what comes from the heart, goes to the heart.

Thank you, Ashley, for your honestly and openness!  Your story has the ability to help so many and I'm so thankful that you are sharing it here.

This is Ashley's Story

How old are you?

When were you diagnosed with endometriosis?
When I was 17 years old- just two days after I graduated high school.

What led you to initially seek diagnosis?
When I was 15, my menstrual cramps were terrible. It became even worse over the next two years with any physical activity. The back and leg pain began and the cramps moved outside my cycle. One day, my legs even gave out from under me. I collapsed at my locker from the pain. I went to the school nurse and we began researching. I knew something was wrong when I was lying in fetal position on the floor crying.

What procedures have you had done? Medical interventions? Lifestyle changes?
I have had 5 laparoscopies and 4 D&C’s in the last 11 years, with my last lap being a year ago.  I went from a stage 1 to a stage 3. I have been on multiple forms of birth control, ranging from combination pills, progesterone based pills, the injection form, the patch, and what I have now which is a 3-year IUD. The side effects were difficult with some of them so I had to switch. As far as lifestyle changes, I tried to add more healthy foods into my diet to make up for the not so healthy foods I still eat. I tried to limit my consumption of too much sugar to avoid migraines or low blood sugar episodes I have recently battled. I try to be off my feet when I can, taking naps after work because of the fatigue, and just make myself maximize the energy I do have instead of burning myself out doing too much.

What was your life like pre-diagnosis?
My life was a lot more carefree. I liked being more active back then- running, biking, walking for hours. I had so much energy! My life didn’t involve chronic pain, medications, doctors, hospitals, specialists, and medical tests; talking about fertility- I was a happy teenager who never thought she would get sick.

Did you know about endometriosis prior to your diagnosis?
I actually did. When I started getting really sick, my high school nurse brought up the idea of endometriosis. I had no clue what it was and I researched. My mother also brought up endometriosis after she noticed my symptoms. I researched for months to better educate myself. After doctors misdiagnosing me and brushing off my problems, I was referred to a specialist. I’ll never forget what he told me- “Ashley, I truly believe you have endometriosis. I’m telling you this as if you were my daughter. I think we need to perform a laparoscopy.” While nothing braces you for that diagnosis, it definitely helps to educate yourself.

Share any difficulty you have sharing your story with family/friends?
My family was very open and understanding. They went through every step of this journey with me. Friends and boyfriends were another story. While my friends were supportive, I was met with that blank stare when you say the word “endometriosis.” Even worse is when you’re willing to talk about it but they don’t want details of a gynecological disorder. And you get the same questions- “How is this possible? You don’t look sick!” “Can you have children?” “Can’t you just take a pill and get better?” I tried very hard to help those in my life understand without making my story out to be an emotional tale resulting in pity. But any discussion requires patience. I found it easier to practice with an online support group to open up more with those that truly understand. Now I can openly speak with my best friend and all my family and friends with ease.

Anything you want to share about your medical team/doctors?
This wasn’t easy to come by! I went to a doctor that said I was too young to have endo and gave me IBS pills. The doctor that diagnosed me ended up not being able to help me past the initial diagnosis, causing me to find one of my current specialists. He helped me so much over the last few years. Yet, I also travel to a bigger city hospital in my state. There is a specialist down there my doctor felt was worth looking into. He even got me into a research study with new medical advances being discovered. Although it’s a lot to keep up with a general physician, a specialist in my town, and a specialist two hours away, I love the caring team I have in place.

What is your hope in sharing your story?
My hope is that I can continue being an advocate and raise awareness for this misunderstood disease. I can help be a voice for someone who knows something is wrong.  By sharing my story in the past, I have helped friends get diagnosed after struggling in pain. As a teen, I felt more alone than ever until I found a support group online that gave me information with people reaching out. I never want anyone to feel as alone as I did when there are so many awareness groups now. If you know something is wrong, don’t let anyone stop you from taking control of your body. And just know you have an army of endo warriors behind you! 

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