From taboo to talked about: SIU sexual health champion helps patient heal

Rhonda, age 58, spent years in silence, struggling with pain she felt was too personal to discuss. It was easier to endure the discomfort than bring it up—even with her husband of 38 years. Despite seeing multiple health care providers, she often left appointments with more questions than answers, hesitant to share the deeply personal issues affecting her quality of life. 

And then, Rhonda met Team SIU. 

What started as an itchy scalp turned into painful sores and hair loss. SIU dermatologist Dr. Rebecca Larsen diagnosed Rhonda with lichens planus, a painful, inflammatory autoimmune condition affecting the skin and mucous membranes. 

For a while, Rhonda managed the symptoms, but lichens planus is known to resurface in other areas with force.

In 2016, when she saw OB-GYN nurse practitioner Kaylie Caswell for a routine exam, everything had changed. In a few months since Kaylie last saw her the condition had evolved and affected not just her scalp, but her genitals. Rhonda’s pain was unbearable, making even the simplest daily activities like sitting, walking and using the restroom excruciating.

“She was in a full-body flare. She was scared and embarrassed,” Kaylie recalls. “She didn’t want to talk about it, so we went at her pace.”

Kaylie, who specializes in sexual medicine at SIU Medicine’s Pelvic Wellness Center, knew with the right approach—and the right team— she could change Rhonda’s life. Together, they found a treatment plan that worked. Kaylie adjusted her medications, provided pain relief options and referred her to SIU Medicine’s OB-GYN vulvar expert, Dr. Katherine Hild-Mosley. 

The road to relief was not easy. Rhonda tried everything from topical treatments to chemotherapy medications and antibiotics, each with its own side effects. But the emotional toll was just as overwhelming as the physical pain. “I felt ashamed about my situation. I was so embarrassed to talk to a doctor about any of it,” she admits.

Kaylie made it clear that the Pelvic Wellness Center was a safe space for difficult conversations. 

“Society has made talking about genitals and sexual health a taboo, but ignoring the problem won’t make it go away,” Kaylie explains. “It just leaves people feeling lost, alone and ashamed.”

Her persistent support and willingness to teach made a difference. Once Rhonda understood why and how each treatment worked, she saw improvements. Beyond treatment, Kaylie went the extra mile—literally. At one appointment, she left her office to retrieve medication from another building so Rhonda could feel immediate relief. 

At SIU Medicine, care goes beyond prescriptions and procedures. It’s about being a true partner in health. In 2023, when new symptoms raised concerns of cancer, Kaylie didn’t just provide medical expertise, she provided unwavering support. 

“I was a mess,” Rhonda recalls. “Kaylie called me on a Saturday night—her day off—to give me the good news that it wasn’t cancer. It was another autoimmune issue, lichen sclerosis.”

One of the most significant milestones in Rhonda’s journey came in 2023 when she returned to the Pelvic Wellness Center after a years-long absence. This time, she had a goal: she wanted to have pain-free intimacy with her partner again. 

“The situation has had a big impact on my marriage. We may be old, but we’re not dead,” Rhonda says with a smile. “Most people think you should just suffer through it, or they were taught to. But Kaylie doesn’t let that happen. She takes care of you emotionally and physically if you’re her patient.”

Within just a few months of treatment, Rhonda achieved that goal for the first time in seven years. 

A key factor in Rhonda’s success was the involvement of her partner. “It takes two to tango,” Kaylie says. “Most partners don’t want to cause pain during intimacy, but they may not know how to help. I encourage partners to attend appointments when the patient is comfortable with it. It makes a difference when they can hear firsthand what’s happening and how they can be supportive.”

For Kaylie, stories like Rhonda’s reinforce why she approaches medicine with a mix of expertise, empathy and advocacy. 

“I grew up in a society where we aren’t supposed to talk about these things, but at the same time, you’re expected to just know. That’s not fair,” she says. “No one should have to suffer in silence.” Kaylie's dedication, training and expertise have made her SIU Medicine's newest specialist for patients with vulvar health concerns.

At the Pelvic Wellness Center, care is a team effort. “From the front desk to the providers, we’re building trust at every step,” Kaylie says. “With every provider they see, they trust us with a little more of their story.” That trust leads to better care and, ultimately, better outcomes. “When one of our patients makes progress, we all celebrate. And when they have setbacks, we work together to help them find the next step forward.” 

“I don’t have a magic wand to fix everything, and my heart aches when people are in discomfort,” she confesses. “But my passion and hard work pay off when my patients see light at the end of the tunnel.”

Rhonda’s experience is a testament to SIU Medicine’s commitment to treating the whole person—not just their medical issues. From dermatology to OB-GYN and pelvic health specialists, her care has been a collaborative effort. “If you need Kaylie to kick ass for you, she will,” Rhonda says. “She’s all in. If she doesn’t have the resources, she finds someone who does. Everyone involved in my care at SIU helped me in some way.”

“Be brave,” Kaylie urges those experiencing health hardships. “Start the hard conversation. Your voice is an important part of this teamwork toward better health.”