Stephanie

How did you get your diagnosis?

I was 22 when I got my diagnosis. I had seen multiple doctors before finding one who actually listened and decided we needed to do surgery to figure out what was going on. He told me it was stage 4 endometriosis.

What symptoms do you have?

I was experiencing very heavy, painful, and irregular periods. I even had pain outside of my monthly cycle. Some days, the pain was so bad I couldn’t get out of bed or walk. It became such a problem that I had to drop out of nursing school because I missed too many classes due to being so sick and in pain all the time. After my surgery, I felt normal for about three years, but now the same problems have started up again.

Do you get any treatment?

The laparoscopic surgery was the biggest thing, and after that, I was on hormone treatment for about three years after the surgery. It helped a lot. But after three years, I had to stop because I no longer had health insurance.

Do you have any (of your own) tools to handle your disease?

Not really. I’ve tried different things, but they honestly don’t make a difference. I use a heating pad for cramps, which helps a little, but not much. Essential oils don’t do much for me either, apart from easing nausea.

How have other people reacted to your disease? Have you felt listened to and understood?

I have not felt listened to or understood. My ex-boyfriend thought he could contract it when I told him about it. My mother, who also had it, refused to admit she had it and possibly passed it down to me. I went through many doctors until I finally found one who listened and took action. It was, and still is, a struggle because it’s an invisible illness.

What would you like the public to know about endometriosis? 

I want people to know that it is real. We are telling the truth. What is happening to us is not normal. Please don’t ask women when we’re going to have babies because some of us can’t. Be kind. Be sensitive. It’s a difficult disorder to deal with, both mentally and physically.