Nikki Bolden’s endometriosis symptoms began more than a decade ago with her first period at age 12.
“I had a feeling something wasn’t right,” she said. “It was the start of a long journey of going to different doctors and being diagnosed with things I knew I didn’t have.”
Not until four years ago, when Bolden was 21, did a doctor in Fort Worth diagnose her with endometriosis.
“I said, ‘What’s that?’” Bolden recalled. “That’s when I did my research and found a lot of good information and resources through EndoFound.”
In appreciation for EndoFound, Bolden is organizing a fundraiser, “The Beat Endo Show.” It will be at 7 P.M. on Friday, March 28, in Denton, Texas, at the Harvest House, a live music bar and beer garden 40 miles northwest of Dallas. The all-female lineup of local musical acts will feature DJ Kanesha, Robyn Harris, Smothered, Remy Reilly, Lady Winters, and Hen and the Cocks. Tickets are $2, and donations will be accepted throughout the evening using a QR code. All money raised, including $1 from each drink purchase, will go to EndoFound.
“It’s been a lot of fun to put together,” Bolden said. “I work in the music industry booking bands in the Dallas and Denton area, so this event combines the two things that have helped me get through day-to-day life with this disease—my local community and music.”
Bolden said the nine years it took for a doctor to diagnose her correctly were gut-wrenching.
“I missed a lot of school,” Bolden said. “It also impacted my relationships with friends. I couldn’t be social and was forced to hide away at home in pain, and nobody understood why or what was going on with me.”
She attended college and graduated, but she had to fight endometriosis every step of the way.
“I went to school close to home because of the endometriosis and was really sick during that time. Pain was my main symptom, but I also had a hard time focusing because I was tired all the time and didn’t know why,” Bolden said. “Fortunately, I had good professors who worked with me. It was hard to get through, but I got it done.”
Bolden had her first surgery after her diagnosis at 21 and another one two years ago at 23. She said endometriosis in both instances was on her uterus, bowels, and bladder.
“I felt some relief for a while after that second surgery, but in the past six months, my symptoms have come back,” Bolden said. “I expect I’ll need another surgery.”
The disease has forced her to go from working full-time to part-time, but she’s grateful to have that flexibility.
“It’s still an everyday hassle that affects every aspect of my life,” Bolden said. “Some days are harder than others, but luckily, I have the support of friends and family. I’ve just learned over the years to figure out how to make work with my life.”
Consistently carrying that positive attitude has enabled her to educate those who don’t know about the disease and help those who have it while she navigates it herself.
“I feel like I’m a walking Google search for anyone who doesn’t know about endo,” Bolden said. “Anytime I make a new friend or am in a situation with someone where I feel I need to explain it, I give them the endometriosis spiel. Sometimes, they already know what it is, but a lot of times, they don’t. I feel I have a responsibility to talk about it for all women who suffer from it.”
With Bolden’s heavy promotion through social media and email, she expects at least a couple hundred people to attend the fundraiser. Harvest House is located at 331 East Hickory Street in Denton. Anyone with questions can contact Bolden at nikkijohnsonbolden@gmail.com.
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
