JACKSONVILLE, Fla. – One in 10 women are diagnosed with endometriosis, a chronic and usually debilitating condition.
“I have my good days. I have my bad days,” said Tam Carter, who was originally diagnosed with the disease in 1999. “I just take one day at a time. I don’t do stress at all, and I have learned that is a mechanism to feeling better.”
Carter never thought she would hear these words twice: “You’re battling endometriosis again.”
“I just got to the point where I was so tired of being in pain and it crippling my life,” she said. “I told my doctor what was going on. I got a little bit better for a couple of years, and then all of a sudden I started having the same conditions all over again and even worse.”
After several surgeries in the past and a few years of things going well, Carter thought she was free of endometriosis, only to find out it never actually went away.
What she learned is she would have to manage it indefinitely, including taking supplements, a change in diet and other lifestyle alterations.
Carter detailed some of the things she opted to do to better manage the condition.
“Certain breads and certain vegetables I had to take out of my diet,” she said. “I drink more water and I try to do fruits that I like. [I eat a lot of] pineapples. No fast food.”
OB/GYN Dr. Chandra Adams says the exact cause of endometriosis is not known, but there are countless times when it can easily be misdiagnosed or people can avoid seeking medical attention right away.
“This condition is such a chameleon,” Adams said. “It presents itself in so many different things that a lot of times women spend a lot of times either feeling like their symptoms are normal, or being told that their symptoms are normal, or chasing some other diagnosis.”
Adams says each person’s treatment varies.
“The cure is to remove the organs that are the cause of it,” she said. “That is typically removing not just the uterus and cervix, but fallopian tubes and ovaries, which obviously ends fertility.”
But Adams says for women who still want to give birth to a child, other treatment options can include medicine, acupuncture, deep tissue massage, cupping or dry needling to manage any pain.
“Suppressing the hormones of your ovaries with birth control pills or other hormones that we can give you [is an option],” Adams said. “We can replace your hormones, but keep your ovaries from actually making them. Then there is surgical management.”
Adams says more women, especially younger women, are speaking up about their conditions sooner. That is leading to earlier diagnoses. But she says there is a long way to go.
“Some people think that staying out of work is normal,” Adams said. “Staying out of school is normal. Being doubled up in pain and vomiting once a month is normal. That is not normal.”
As far as Carter, she is using her experience to help others who may be afraid to speak up.
She started a foundation called “Shed a LIGHT on.” It includes hosting annual panel discussions with doctors and other advocates, while allowing people who attend to ask questions so they can get answers for their treatment.
Now in its fourth year, the next panel discussion is scheduled for March 8, and Carter says the format this time is going to be a podcast.
“They are not alone. Be fearless,” Carter encourages other women who may be dealing with similar symptoms and conditions. “They are not alone. There is someone always that can relate to you.”
If you are interested in being a part of the upcoming discussion, email “shedalighton@gmail.com” for more information and to register.