‘Now that I’m an endo warrior, I pay more attention to my body. I learned that I am tougher than I thought.’

Krystal Chocianowski, Massapequa

“Endometriosis is a terrible disease that affects 1 in 10 women. Most women don’t know they have it. I had very painful periods ever since I started puberty; I needed a heating pad in my lap while at work and Tylenol and Motrin to just get me through the day. When I told the gynecologist I had a lot of pain, he told me to take birth control. I was still doubled over in pain.

“In 2019, I was trying to conceive. It didn’t go well, so my gynecologist suggested a test to see if my fallopian tubes were blocked. He suspected that I had endometriosis, which is a uterine lining-like tissue that grows outside of the uterus. It’s like having a spider web inside of your abdomen. It tends to stick to your organs.

Women with pain often get blown off because doctors just can’t see the problem.

“I found out my left tube was blocked, so I was sent to an endometriosis specialist. There are very few doctors who specialize in endometriosis, especially excision surgery which is known as the golden standard for treatment. In June, I ended up having scheduled excision surgery, during which they go in robotically to remove it. I had it stuck to my bladder and all around my abdomen. There is no cure, so it’s possible that it will grow back.

“Because I had lost a fallopian tube, I went through the IVF process. I was told there was a 25 percent chance I would be able to get pregnant. I started my first IVF treatment in August, but that didn’t work. I started the next cycle in December and was lucky to enough to get pregnant. I now have beautiful twins. After that, I was able to have another child without IVF.

“Everybody is not lucky enough to be fertile after they have endometriosis. Women need to realize what a normal amount of pain is when they have their periods. After the surgery, I finally had regular periods and I’m not in pain. Now that I’m an endo warrior, I pay more attention to my body. I learned that I am tougher than I thought.

“People should advocate for themselves with their health and do their own research while looking for a specialist. Women with pain often get blown off because doctors just can’t see the problem. If you keep pushing and looking for the right doctor to help you, somebody will eventually be able to find it and help.”

Interviewed by Iris Wiener