I Was Diagnosed With Endometriosis At 20 And It Changed My Life Forever
Despite what this disease has done and will continue to do, I wouldn't change it for the world.
Leszek Glasner / shutterstock By Luna Beatty
It’s hard to hear something as definitive as an endometriosis diagnosis at a young age.
When I was a child, I dreamed of finding my Prince Charming, filling my dream house with beautiful kids, and living happily ever after. Life would be so easy then.
As career plans changed and people came in and out of my life, that part of my future seemed so certain. The only thing I was completely sure of was that I wanted to be a mom.
But then, at 20, I was diagnosed with endometriosis.
For those who don’t know, endometriosis is a disease in which the uterine lining, called the endometrium, grows outside of the uterus. It seems simple enough, but it is listed in the top 20 most painful conditions in the world.
I’ve had people ask me to describe the pain to them, but I honestly still don’t know how to put it into words.
Others have said it feels like fireworks going off inside of you; that you’re in so much pain and you’re bloating so badly that it feels like you’re going to explode.
Others said it’s like your uterus is laying on a bed of razor blades, like someone taking a cheese grater to your cervix, or that a million ninjas with samurai swords are slicing their insides.
Not everyone with endometriosis is infertile. Most of the time, it doesn’t affect your fertility. Things like egg quality, adhesions, and ovarian cysts can block implantation. The cysts are my problem.
That was actually how I got diagnosed in the first place. I was having pain and my gynecologist found three cysts on my ovaries. They were small, so the doctor told me to just let them go away on their own.
A year later, my pain was ten times worse and I was having more and more symptoms.
I did exactly what you typically shouldn’t do. I thought I had PCOS (part of me still thinks I do, since women with PCOS are more likely to also be diagnosed with endometriosis).
But I had more symptoms that related to endometriosis than PCOS.
I had an ultrasound shortly before I turned 20 that made my new doctor (an endometriosis specialist) believe that I had endometriosis. A few months later I went in for surgery and was told that I have endometriosis.
Since moving out of state, I have yet to find another doctor that could help me with my endometriosis. I’ve refused to acknowledge the fact that I may never have kids.
My plans are to do further fertility testing if I can and honestly just hope for the best. Yes, adoption is always an option and so is surrogacy, but I don’t know if I’ll ever make enough money for either of those options in the future.
I’ve struggled with how I got to this point in my life.
Was there anything I could have done to prevent this from happening? Was it my fault? If I were to have children, would my girls have to deal with the same pain I’m dealing with right now?
Endometriosis leaves you with so many questions, many of which you don’t or probably won’t ever know the answer to.
It’s such an uncertain illness with little information. There’s no cure. It’s difficult to treat. Treatment can vary and is mostly to make sure the disease doesn’t interfere with your daily life.
Outside of hormone treatment and excision, there isn’t much doctors can do for you. Your other options are a heating pad (which confines you to a wall), pain medication and, according to Google, “monitoring for changes and improvement.”
This is a disease that you will live with for the rest of your life. It can cause so many other health issues and it controls so much of your lifestyle.
To this day, I’m thankful to have answers and to have gotten them so early on in my journey. Many women wait 10 years or more for their diagnosis, so I feel lucky to have been diagnosed so early.
And despite what this disease has done and will continue to do to my life, I wouldn’t change it for the world.
The way I’ve been able to advocate for other women and educate them on an illness that so many people don’t know about has truly changed my life and I will forever be grateful for that.
Luna Beatty is a poet, and writer for Unwritten and content creator for Odyssey, and an Endometriosis Warrior. Her work focuses on health and lifestyle topics. Visit her website for more.