A Mother’s Perspective: Kelsey’s Story

It was 2009. Kelsey was 16. I was constantly on the computer researching her symptoms. One day I read an article about something called vulvodynia. When I read the description, I was dumbfounded. Why had no doctor ever mentioned this to us?

Vulvodynia is defined as chronic pain in the vulva region with no apparent cause that lasts for three or more months. Any pressure on this area like sitting for too long or wearing tight clothes can provoke pain. Women describe the sensation as burning, stinging, or stabbing. It can also cause burning urination.

I knew without a doubt that this was what Kelsey had. We anxiously waited for an appointment with a vulvodynia specialist. After a lifetime of wondering, it took a 5-minute exam for him to diagnose Kelsey with Primary Vestibulodynia. The word primary indicated that the patient’s condition was congenital (since birth). The doctor recommended a procedure called a vestibulectomy where he would surgically remove Kelsey’s vestibule.

After years of being ignored, we felt vindicated. Kelsey wasn’t alone. What she’d been experiencing for years had a name, and there were other women out there suffering just as she was.

Kelsey had a spinal cord stimulator implanted, pudendal nerve blocks, and endured years of pelvic floor therapy. She even tried wearing a urine bag, but nothing worked. A doctor suggested that Kelsey see a neurologist and be tested for something called Small Fiber Neuropathy. I’d never heard of SFN and when I read about it, I was confused. The presenting symptom in three- fourths of SFN patients was pain or burning in the feet. It was usually associated with diabetes, and the average age of diagnosis was 54. Kelsey was 23, didn’t have diabetes, and had never had pain in her feet.

The neurologist did a skin punch biopsy. About a week later, he called and said Kelsey’s biopsy was positive for SFN. The epidermal nerve fiber density result was 0.4 in her thigh and 1.34 in her calf. He then ordered dozens of lab tests because many conditions can cause SFN. When all the labs came back negative, doctors called Kelsey’s SFN idiopathic. Without a cause, there was no treatment.

What I didn’t know at the time was that SFN can affect a person’s autonomic system. Even though Kelsey’s bladder would be full, she wouldn’t be able to start a stream of urine. Sometimes she’d go more than 24 hours being unable to urinate. A motility test showed that over a four-day period, the food that Kelsey ate barely moved through her digestive tract which caused severe constipation. A gastroenterologist found abnormal dilation throughout Kelsey’s colon. Being nauseated became commonplace, and sometimes she vomited even though she wasn’t truly sick. Kelsey was always too hot or too cold, never comfortable. The chronic fatigue she experienced was debilitating. Because her symptoms were worse at night, she’d sleep during the day and barely interact with people. Her hair was falling out, and her teeth were crumbling. Even her pancreas had atrophied, and still doctors didn’t seem concerned.

During the spring of 2022, Kelsey said it felt like her pills were getting stuck in her throat. An ENT did a barium swallow test and said her esophagus was misfiring. This newest symptom was also blamed on her SFN.

A few months later, I spoke to Kelsey on the phone one night. She said, “I’m in a lot of pain. I love you,” and then hung up the phone. A normal mom would jump in her car and race to her child. But for me, this was “normal.” I thought—I’ll see Kelsey in the morning.

The morning Kelsey passed away, I put her young golden retriever, Brody, into my car and brought him home to live with us. Each day I clung to him as I tried to live in a world where my daughter was missing. I was so grateful to have this last gift from her.

• Don’t take no for an answer.

• Listen to your body.

• Advocate for yourself regardless of what others say.

A few weeks before Kelsey died, we were in the car headed to a medical appointment. Kelsey said, “Something is seriously wrong with me. People are going to be sorry.”

I responded in an exasperated way, “Kelsey, you’ve seen a lot of doctors lately. Everyone says they can’t find anything wrong. You’re going to be fine.”

Kelsey had been to the emergency room 3 times over the last 5 months, but every time they did nothing and sent her home. I also said, “Stop going to the emergency room. They’re not going to help you.”