Three years ago, Jenn Zanni went to see her doctor about back pain. She figured she had thrown her back out exercising, and hoped she would be back in the gym in no time. When the doctor found an ovarian cyst, she still wasn’t worried. It was treatable. The doctor said they would keep an eye on it.
Within three weeks of the discovery, though, Zanni’s back pain became unbearable. The cyst had grown, and she needed surgery. What the doctors found, she wasn’t expecting.
The cyst was caused by endometriosis, a gynecological disease in which cells from the lining of the uterus grow outside the uterine cavity. Zanni’s endometriosis was classified as Stage III of four possible severity levels.
Zanni turned to her mother and asked the same question that all women who suffer from endometriosis face, “Can I have children?”
The answer is complicated. Zanni was 32 and single at the time, and her doctors told her she would have only two or three more years to get pregnant naturally. She felt hopeless and angry.
“I completely had a meltdown. My whole life I’ve wanted children,” she said. “It was so much pressure. I didn’t think it was fair.”
Now 35, Zanni came to realize that lamenting her situation wouldn’t help.
Instead, she’s helping others.
She started the Endometriosis Foundation of Rhode Island, a 501(c)3 support and resource center that connects women with the disease and raises awareness and funding for research and treatment. Next Tuesday, Jan. 22, the Foundation will host an event at the corporate headquarters of Alex and Ani in Chapel View in Cranston from 6 to 8 p.m. Fifteen percent of sales that evening will be donated to the Foundation, and more than 100 people are expected to attend.
“One day I said, ‘This has to be my purpose,’” said Zanni, who serves as the Foundation’s president. “I decided I wanted to start this Foundation to help myself talk about it and have others feel comfortable to speak about it as well.”
Awareness and research, she says, is key. More than 5.5 million women in the United States are affected by endometriosis, and it is often a source of infertility for women. Still, there are few resources out there for women with the disease, and none locally, and awareness is limited.
“I think a lot of people just don’t know anything about it. There’s nothing out there around here, and nobody knows why this happens,” she said.
There is no cure for endometriosis, and surgery that removes the cysts and uterine cells does not stop the disease from coming back. Eating healthy can help with pain, but treatment is essentially non-existent.
With infertility closely linked to endometriosis, Zanni knows how isolating the disease can be. After her diagnosis, she closed herself off, choosing not to talk about the disease.
“I felt, for a while, ‘Why me?’ Because I’ve been single, my worry is, when I do meet someone, I have to tell them that I have this. They could say, ‘See you later.’ That’s a fear for me,” she said.
Even turning to the people she loves proved challenging.
“I feel bad for my parents. I know how badly my parents want grandchildren and it really breaks my heart that they don’t have them yet,” she said, through tears. “Those are my two biggest struggles.”
But isolating herself only made matters worse.
“Keeping things bottled up doesn’t get you anywhere. The more I talked about [it], the better I felt,” she said.
Since starting the Foundation, Zanni and her Board of Directors, including mom Linda Zanni, have created a website and a Facebook page. The Board also includes Treasurer Daniela Gatti, Secretary Lisa Meglio and Melinda Witt Psilopoulos, close friends of Zanni’s. Zanni is a native of Johnston and a graduate of Johnston High School who now lives in Lincoln. By day, she works for CVS Caremark, but her nights and weekends are now filled with work for the Foundation.
Through social media in particular, Zanni has connected with dozens of women who face the same challenges, and who have gained solace in finding a support network of other women.
“I want people to feel like they have somewhere to go to talk about it,” she said.
Early on, the influx of emails and messages was overwhelming.
“I sat up crying, reading peoples emails, hearing what they’ve gone through,” she said, adding that social media has been an important resource in finding people affected by the disease. “It’s such a great tool, and I believe that’s what it’s really meant to be used for.”
Last week alone, the Foundation’s Facebook page picked up nearly 40 new likes. The page serves as a meeting ground for endometriosis sufferers, and also a tool for the Foundation to promote upcoming events. After Tuesday’s event, the Foundation has put together a team for the Irish 5K road race (www.irish5k.com) in Pawtucket on March 2 at 11:15 a.m.
Funds raised will support the Foundation, and also medical centers dedicated to research and treatment of the disease. Zanni anticipates that the Boston Center for Endometriosis will be the beneficiary of some of these funds, as it is the only medical center in the area dedicated to finding a cure. Zanni hopes that increased awareness and research will lead to early detection, saving women from the pain she went through.
By the time her endometriosis was detected, removing her ovary was too dangerous. Doctors feared that Zanni would bleed out, so now she continues to deal with intense back pain and cramps as a result of the disease.
“I have a constant reminder that I have endometriosis,” she said.
Ultimately, she hopes her Foundation can be part of finding a cure. For now, she is just glad to have a purpose and to be able to support others at a time she knows can be devastating. The experience has brought her joy, and brought joy to others.
“It’s such a great feeling to be able to help other people,” she said. “I feel like I’m not alone.”
For more information on the Endometriosis Foundation of Rhode Island, visit endofoundationofri.com or search for them on Facebook. The Charmed by Charity event at Alex and Ani in Chapel View is open to the public.