Amanda Frey was a jovial 16 year old when she was diagnosed with what is referred to as an invisible illness, Endometriosis, a chronic disease that causes debilitating pain.
"At times it feels like there's just a chainsaw going through you non-stop, to the point where it's in your back and legs, and it's just non-stop pain," she said.
She isn't alone. 1 in 10 women in the United States are impacted by the same condition, yet there is little research being done to find a cure and because it's not very well known, it can take up to 10 years to diagnose.
The disease occurs when tissue similar to the endometrial lining grows outside the uterus and eventually bonds like glue to other organs. Aside from the intense pain, it also causes a host of other problems, including infertility and chronic fatigue. And because there is no cure, it often continues to grow throughout a person's life, with any people needing laparoscopic surgeries to have the tissue cut out. Amanda had two of them withint the first year of her diagnosis, and was then put on medication to suppress her hormones, hoping to slow the disease down.
"I had menopause when i was 17, and it's not fun. Now that I'm in college, it's more embarrassing. I'll sit in class and start shedding layers and everyone looks at me weird and then I start to fan myself," Frey said.
She also said that the worst part about having endometriosis is not knowing how it will affect the rest of her life. Unfortunately, experts say she may be right. Dr. Gerald Harkins of Penn State Hershey Medical Center specialized in Endometriosis care and says that the disease is extremely puzzling.
"The hard part about endometriosis is that it defies a simple explanation. There are women who have Endo that is very quiet and the disease won't grow rapidly and if they are on suppression it goes quiescent. Then there are women with the disease that will have their Endo grow regardless of what we do for them medically," Dr. Harkins said.
He also said one of the most challenging aspects of the disease is that the only way to diagnose it is through surgery. The other challenging factor is talked about is that because the disease is not widely known, many patients can actually go from doctor to doctor for a very long, not knowing what is wrong with them.
"The average time from when a woman first begins to complain about symptoms until someone actually helps to take care of it is 6-8 year," Dr. Harkins commented.
Other women are dismissed by their doctor and told that what they are experiencing is normal for women's health issues. Jessica Knoust was one of those patients.
"If I had a dollar for every time I heard a woman come to me and say that I knew something was wrong but I thought I was crazy, because everyone else told me I was fine, I'd be a millionaire. Endometriosis pain at it's worst is like being poisoned. It's like your insides are being wrapped in barbed wires and twisted and pulled in all of these awful horrible ways," Knouse said.
So she refused to give up and saw 7 different specialists until she was finally diagnosed many years later by Dr. Harkins at Hershey Med.
"Once you have those answers, then you can navigate this disease. but being in a land of uncertainty is almost as debilitating as the disease. It can feel very isolating and it can feel very lonely at times, especially if you have people in your family that don't understand what you're going through or your friends don't understand," she said.
So she decided to create the Central Pennsylvania Endometriosis Support Network on Facebook, as a place where other women suffering could come together. It now has over 500 members and Dr. Harkins says that every one of their voices is critical in the fight to beat this disease.
"These groups getting together to mobilize the idea that if there are 10 million women in the united states with endometriosis , we should be able to come together and continue that education and push towards finding a cure, and better treatment for endometriosis. "