Alena Beliauskaya, Patient Advocate and Volunteer, Tight Lipped

When I moved to the US in early 2023, life threw me a curveball. Severe UTI symptoms hit me. I’d only had 1 UTI before but it’s unforgettable. New to the country, with no proper insurance and no idea where to start, I booked the quickest obstetrician/gynecologist appointment I could, paid a lot out of pocket, and left with antibiotics. It helped for a while—until symptoms came back.

The rest of the year was a frustrating cycle: symptoms, antibiotics, and no answers. Finally, after months, I saw a urologist in New York who told me I had interstitial cystitis (IC).

I didn’t know what IC was. A quick online search said it was a chronic condition I might have forever. I felt crushed. Between trying to adjust to life as an immigrant and now dealing with a diagnosis like this, I didn’t know what to do. My urologist tried to help. We ruled out Hunner’s ulcers and tried different meds but nothing worked. After 3 months I realized I couldn’t just wait and had to take charge.

I started reaching out to doctors myself. I contacted over 20 specialists on LinkedIn, including urogynecologists, pelvic floor therapists, and mental health experts. I was surprised and grateful when many replied, sharing advice and pointing me in the right directions.

I dove into research. I read books, studies, and stories from other IC patients. I began to see patterns in my symptoms and figure out triggers.

Combining advice from doctors with what I learned on my own, I started to understand my version of IC better. I felt more in control. For example, I found out my pelvic floor was fine and ruled out food as a trigger. Stress, however, played a huge role. I focused on managing my nervous system with daily breathing, bedtime routines, and journaling. These steps didn’t eliminate symptoms but they reduced stress and helped me avoid severe flares.

Support from others was so important! When I learned about IC I had no one to talk to. My family didn’t understand and I didn’t know enough to explain it.

I joined online IC groups on Facebook and Reddit as well as a positive community with virtual meetups twice a week. Talking to people who understood gave me hope and helped me feel less alone. I met a few of them in real life in New York, which was great! We walked, shared worries, and celebrated small wins like drinking coffee again.

These meetings allowed me to talk openly about personal topics like intimacy in relationships. I realized how much people with IC, including me, struggled to discuss their condition with friends or family. I started opening up to people around me, even those who didn’t know about IC. To my surprise, 3 women were eager to share as well that they had similar struggles and were relieved to talk.

Inspired by these connections I joined Tight Lipped, an advocacy group for underresearched women’s health conditions. Their mission to raise awareness and to bring education about these conditions resonated deeply. Now I’m planning to start a chapter in San Francisco.

I haven’t “cured” my IC, but I’ve made progress. I’ve ruled out triggers and am exploring links to hormonal imbalances and mast cell issues, given my history of allergies.

Living with IC as an immigrant has been one of the hardest things I’ve faced, but it’s taught me resilience, self-advocacy, and the power of connection. I’m sharing my story to show that even with a condition as tough as IC, progress is possible through learning, teaming up with the right people, and leaning on a strong community.