Lamar County woman shares story of unseen disease

Lamar County woman shares story of unseen disease

MOSELLE, MS (WDAM) - It’s a disease that is poorly understood because you can’t see it. Because of that, patients are often stigmatized. A Lamar County woman and her doctor are hoping to change that. By sharing her story, they want to open the hearts and minds of not only the public, but doctors.

“If I had stopped after maybe the fifth or sixth doctor said there is nothing wrong with you, I don’t know where I would be today,” Tamesha Barnes said.

For almost a decade, Barnes’ life was controlled by pain.

“Unbearable pain. That’s all I remember is just pain. It was to the point where I could barely get out of bed, and if I did I couldn’t walk up straight,” Barnes said.

She said the simple answer to the cause of her struggle was her menstrual cycle. She said her family and doctors downplayed her symptoms.

“I would go to different doctors. They would put me on birth control and say, ‘Oh, it’s normal, you just have painful periods. Here is some Tylenol.’ And send me on my way,” Barnes said.

But Barnes said she didn’t want living in constant pain to be her normal. She said after years of countless doctors and emergency room visits, a doctor recommended surgery for what was thought to be masses on her ovaries.

“And it wasn’t until I went in to get those masses removed that I got my diagnoses,” Barnes said.

In 2011, Barnes finally had an answer. Endometriosis, a disorder where tissue that normally lines the uterus grows outside the uterus. Even after her diagnoses and three surgeries, Barnes found little comfort. She said she was at the end of her rope after taking Lupron for her condition. She said it caused irreversible damage.

“Such as bone loss,” Barnes said.

Barnes didn’t give up. She searched until she found out about excision surgery and Dr. Ken Sinervo.

“We prefer to use what is called excision, where we are actually cutting out the lesions,” said Sinervo, Medical Director for the Center for Endometriosis Care.

Sinervo is the medical director for the center in Atlanta, a global leader in providing gold standard care for Endometriosis. He performed the excision surgery to remove Barnes’s severe stage 4 endometriosis. Sinervo explained why it’s more successful than other treatments.

“The majority of gynecologists use something called ablation, which instead of a 5 percent recurrence, may have as much as a 80 percent recurrence within one or two years,” Sinervo said.

Sinervo said doctors don’t know what causes this condition, which affects more than 8 million women in the U.S., and there is no cure. But he said doctors can improve women’s quality of life by considering endometriosis earlier in care.

“We would definitely decrease the time to diagnoses and then the time to getting the best possible care as soon as we could,” Sinervo said.

Barnes said women can make sure they are getting the right care sooner by being their own biggest advocate.

“Listen to your body. You know it better than anyone. No matter how many doctors you have to go to keep going until you get answers,” Barnes said.

Barnes is hosting an Endometriosis Awareness Event for anyone interested in learning more about this disease, and need help finding support. You can attend Cupcakes and Conversation, An Endometriosis Awareness Event on March 31 at 2 p.m. in Hattiesburg.

RSVP for location by emailing Barnes at msendowarrior@gmail.com.

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