One in 10 women has endometriosis but most aren't diagnosed with the disease until they're in their 30s and 40s. NY1's Erin Billups filed the following report.
Take what most women experience during their monthly periods - cramps, bloating, muscle aches - and multiply that by, say, 50, that's how bad it was for Casey Berna.
"I went to every sort of doctor, and no one gave me any answers," says Berna.
After colonoscopies, the removal of her appendix and gallbladder, fertility treatments and then pregnancy Berna's symptoms just got worse.
Even during surgery, doctors looking at her organs failed to notice signs of her endometriosis when the tissue that lines the uterus also grows on other organs.
"I had multiple miscarriages, gone through a lot of failed cycles, and my quality of life was terrible, and that's when I knew I needed to find a solution," recalls Berna.
It wasn't until she met Dr. Tamer Seckin, an OGBYN at Lenox Hill Hospital, that she was diagnosed with severe endometriosis.
"It's just very painful periods, pain that lasts more than two days...that is also maybe associated with severe G.I. symptoms, nausea, vomiting. Or if they are sexually active, pain with sex," explains Dr. Seckin.
Why this happens, no one knows - yet. But it's the shed tissue and blood that never exits the body that causes so much pain.
"There's monthly bleeding in there, in the middle of it, the scar tissue get thicker, deeper and more solid and nodular. And it kind of contracts and pulls things together," says Dr. Seckin.
Seckin eventually operated on Berna, cutting that thick scar tissue from her pelvic organs.
She no longer has excruciatingly painful periods. But she says she could have been spared all those years of pain.
"It's one out of, every ten women have this. And yet it still takes an average of ten years to get diagnosed. That is very sad," says Berna.
Seckin agrees and says awareness of the condition needs to grow substantially.
"It's not only spreading the word, it's basically teaching the right word. And practicing the right thing," he says.
For more information:
http://www.drseckin.com/what-is-endometriosis
http://www.endometriosisassn.org/endo.html