Hailey lives in Okalahoma. When she was 22 years old, she received her Endometriosis diagnosis. Now, over a decade later, she offers some stellar words of advice!!
Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.
I grew up in a house where “that time of the month” wasn’t really talked about. I have 2 older sisters so as long as the bathroom was stocked with tampons no one ever talked about it. I got my first migraine with my first period. Which was in 4th or 5th grade. They have always been miserably painful and heavy but being as they were always that way and I was to shy to ask any different. The older I got the worse I got, once I hit highschool we added cyst on top of everything else. I would miss school at least 4 or 5 days a month. I think it was my freshman year my mom finally took me to see a neurologist because all the ER would do was give me a double dose of morphine and send me on my way.
After several rounds of hormone injection and 3 days in ICU I was pain free for about 3 months. After that I struggled through different birth controls and medications until my early 20’s after a 2nd trimester miscarriage and inability to get pregnant again my OB finally agreed to do a scope. By this time he had me feeling all this was in my head and every woman was uncomfortable during her period. Ugh!
Tada he came straight out of the OR and told my husband I wasn’t losing it, he knew exactly what it was but would need a lab to confirm it. I was able to get 2 amazing boys out of this body before it decided to completely launch a war on me. I had done about 15-18 months of Lupron and when that only lasted about 2 months past my last injection I gave up on my Dr.
We relocated due to my husbands job and the amazing woman I found that was familiar with Endo. gave me one look and said- “please let me help you be pain free.” She listened and cared and for once didn’t make me feel crazy. I wanted a life back, actually I wanted a life better than the one I thought I had. I wanted to cuddle with something other than my heating pad. So in 2013 I gave up my war and got a hysterectomy at the age of 28. She was able to salvage one ovary for hormone production and she was also clear this was not a cure and it wasn’t 100% guarantee.
Today I live my life, I am able to do things I was never able to before. I can’t lie and say that when my friends announce they are pregnant that it doesn’t sting somewhere in my heart because it does. I would say I am 85% pain free, if I keep my diet and lifestyle in check I don’t have a lot of symptoms, but when I don’t I can tell and BOOM HELLO FLARE UP! It’s amazing how I can still swell up and cramp when I have no dang uterus. I will also say close friends cycles sometimes cause me some angst, I still breakout along with them. Geez someone definitely didn’t think it through when the female body was designed!
Words of Advice for Us: I myself don’t have a daughter but I urge those who do, talk to them about their periods. Let them know what is normal and what is not. Bridge the gap window of 8-10 years to diagnose. No one should have to go through life feeling like they are crazy or it’s all in their head! It’s an uncomfortable conversation I am aware, I have boys and we have to talk about things I never wanted to know also!
The Last Word: I don’t think there is a single right or wrong treatment answer for any of us. Every time I come in contact with an Endo-Sister and we swap battle stories they are so different even if the outcome is the same. Never give up finding your peace, you’re the only who knows what that looks like.
I want to send a special Thank You out to Hailey for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Although I still have my uterus, I know that sting you feel when friends announce pregnancies. I haven’t been able to conceive and it just creates a tender spot…ANYWAY, thank you SO much for sharing!!! Yours, Lisa.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.