My Endometriosis Journey

 March is Endometriosis Awareness Month.

What is Endometriosis? Endometriosis is a condition where the lining of the uterus flows out into the pelvic cavity - instead of flowing out of the body it wraps around organs in the body. About 11% of American women are diagnosed with Endometriosis.

Here's my story...

I always had really painful cycles - I thought that was normal. I knew my other friends had cramps and I just assumed I wasn't as tough as them as I went home early from school or stayed home from events in pain. 

This continued until I was 20. I was in my 3rd, and final, year at college and was in horrific pain not just "that" week but throughout the month as well. The pain was getting worse and I found myself staying in my apartment more and more. At first, I thought it was the stress of carrying 21 credit hours, balancing work and school, and living off campus for the first time. By October I called my mom and said "I think I need to see a doctor." I went home on Fall Break and saw our family physician who ordered and ultrasound. I was back at school by the time it had been read so we just had a phone call about the results. She diagnosed me with Stage 3 Endometriosis. She recommended oral hormones and suggested that when I got married (Mark and I were engaged already) that I see a specialist as I would need surgery in order to get pregnant. 

That was a HEAVY phone call. I was alone in my apartment, not sure want to think, called Mark sobbing to let him know that I may not be able to have children, he reassured me that he was open to adoption, and I went to the pharmacy to fill my prescription. The oral medication did help relieve some pain during my cycles and I had less breakthrough pain during the rest of the month. It felt like the best case scenario and just wanted to survive the rest of college.

Me at 20.

This is my favorite picture from that fall. My friend Daniel

and I walked to the stadium for a UfoL game.

**I do want to point out that I was INCREDIBLY blessed to be diagnosed by the first doctor that I saw and at a young age. Thankfully she was very knowledgeable and quick to name the problem. I now know people who see multiple doctors before getting any kind of diagnosis. 

Mark and I married in May 2009. I saw two doctors in Indianapolis before finding our family practitioner that we love. The first two doctors were not kind or understanding in any way. They were always short with me, quick to get me out the door, and I didn't know how to stand up for myself and to ask for more. I just quietly dealt with the pain and the fear that we wouldn't be able to have children.

By the grace of God have welcomed two biological children. Both times it took us quite a while to get pregnant but we feel incredibly blessed to have had two healthy pregnancies and two healthy babies. While we had difficult, horrific with Annabeth, deliveries none of the issues with either delivery were because of my endometriosis.

We welcomed Annabeth in October 2011.

Owen joined us in June 2015

Having the children was wonderful and exciting and my health took a backseat. I dealt with chronic discomfort and pain over the years and masked it by staying home many days. I was frustrated. I felt like in my 20s I should have been able to easily take my kids to the library or park without terrible pain. Every doctor visit I would mention it but each time I heard "It's just like this for some ladies" or "Some people have a harder time than others" or "You just have to deal with it" 

In July 2018, I sneezed in our kitchen and fell to my knees in pain. I spent months having expensive scans done, meeting with surgeons, and visiting new doctors. I have written about my 2018 surgery here. In short, I FINALLY met a doctor who said "Amy, this is really serious. You have polyps in your uterus and you have endometriosis spread through out your stomach. We're going to do surgery next week." That surgery changed everything for me and meeting that surgeon changed everything. Following that surgery I had 18 months with virtually no pain. My cycles were tolerable. I could take the kids on long walks, go on hikes, visit the park and never worry that I wouldn't be able to walk to the car. I felt like I had my body back and I also felt like I had so much mental health back as I was finally heard.

Then last spring it was back. At first small crampy pain, then that nagging ache, and by summer the pain was back in full force. I thought I was going to pass out from the pain while waiting to turn in Annabeth's 4H project, I would collapse in the car after pushing a shopping cart through the grocery, I began making excuses to stay home so no one would know. 

By July I couldn't take it anymore and called my favorite surgeon. He saw me within days because of the fear of polyps (possible cancer) returning. The ultrasound confirmed what I already knew - the endometriosis was everywhere, wrapped around organs, and a large tumor had formed. We made one last ditch effort to treat it with medication, the insurance company likes to see this tried before they cover surgery, but 60 days into the 90 day trial I was worse than ever. So, last fall, at just 33 I had a hysterectomy (full post on that here) 

Since having Annabeth I have had five surgeries, some too personal to ever include here. For 13 years I fought a battle with the name Endometriosis and for many years before that I fought a nameless beast. I am daily amazed with how I feel - I find myself walking with the kids, afraid to walk too far until I remember that there's no pain - I can make it home. Sitting on hard chairs or in the car used to cause pressure and pain - I avoided visiting family/friends because I didn't want to deal with the pain. We went to Florida after the surgery and I easily made the trip. As of November I am officially cancer/tumor free. The last step of this journey will be a one year check in October to ensure that no microscopic endometriosis was left. 

Why do I share this?

I share for my 20 year old self who didn't know that I deserved more than a phone call diagnosis and a pill treatment plan.

I share for my 20-something year old self who was ignored, belittled, and shot down by OBGYNs who should have done better.

I share for my 30-something year old self who finally understood how to stand up for myself. 

As for you...

Get checked. Go to your yearly exam. Be open. Be honest. When you're not heard - say it louder and find someone who WILL LISTEN. You get one body, one life. Don't waste it because it's hard to speak out.