A disease that’s as common in women as diabetes is likely less known because it’s not talked about as much.

It’s called endometriosis — an often “painful” disease that causes tissue that normally lines the uterus to grow outside the uterus.

For nurse practitioner Tafiea Stokes, her passion to raise endometriosis awareness is two-fold.

Stokes suffered from symptoms from as early as age 14– such as severe pelvic pain and pain during periods. It would be 12 years before she would be accurately diagnosed with endometriosis.

She discovered more symptoms along the way including pain during intercourse. Stokes, now a national endometriosis ambassador, would also experience difficult conceiving a child when she and her husband were trying to start a family.

“I had been to many specialists. Many doctors and have been misdiagnosed a couple times,” Stokes shared. “I just think there needs to be more education out there so that we can treat it and diagnose it better.”

Finally knowing what had been causing pain for so many years was a relief when she learned her diagnosis under the care of Dr. Robert Kiltz, of CNY Fertility, but she would also learn about available treatments and get help conceiving through IVF.

“Pain is not normal,” Stokes shared. “That’s your body’s way of telling you that something is wrong. If you’re feeling something that’s not normal for you — you definitely should address that with your provider.”

As a nurse practitioner — Stokes encourages her own female patients to be upfront about any reoccurring issues.

Outside of the office, she’s laying the ground work for a local endo-support group.

“You’re not alone,” Stokes said. “There are 200 million women affected worldwide by Endometriosis, about 8 to 9 million in the U.S., so you’re not alone. You have a lot of ‘Endo Sisters.'”

Stokes is active on social media — posting with #TeachEndoNow to make it a requirement by the year 2020 to teach endometriosis education in high school health classes and add curriculum to both nursing and medical schools.

This spring, Stokes will also travel to Washington, D.C., for the largest EndoMarch in the country. While she’s there, Stokes will lobby alongside her Endo Sisters for #TeachEndoNow and to get more research funding for endometriosis treatment and screening advancements.

Currently, the only way to diagnosis endometriosis is with a surgical biopsy. Treatments include pain medications which can have negative long-term effects. 

Endometriosis can spread and cause damage to many organs and tissues beyond the reproductive system, including bowel, bladder, kidneys, diaphragm, nerves, muscles and lungs, according to endomarch.org.

To join the local support group — Team Syracuse – Worlwide EndoMarch for Endometriosis Awareness, click here

You can also follow the group on Instagram by clicking here.

Next year, Stokes hopes to start local meetings for the group, attend health fairs representing the group and in 2020, she hopes to launch an EndoMarch in Syracuse.

Common Signs & Symptoms:
-Severe pelvic or stomach pain
-Pain during or around menstruation
-Heavy bleeding during periods
-Infertility or sub-fertility
-Painful bowel or bladder symptoms
-Pain during sexual intercourse
-Chronic nausea, vomiting, diarrhea and constipation
-Musculoskeletal symptoms, including leg,lower back and pudendal nerve pain