By Tina Aswani Omprakash, MPH
“It feels like IBD of the bladder,” I remember telling my gastroenterologist, my gynecologist and my newfound urologist last summer. I couldn’t sleep at night with the horrors of this new urinary monster plaguing me and bringing me back to my fistula days.
During the summer of 2025, I got hit hard by COVID and bam, I started having UTI-like symptoms. The UTI feeling of burning, urgency, frequency and even small tinges of blood in my urine had hit me like a ton of bricks. I was running to the bathroom every 10, 20, 30 minutes and it was excruciating pain like none other.
The complicated thing in all of this was the pain felt similar to the pain I would have with perianal Crohn’s with lower left groin pain that would hit really hard. The only difference was that much of the pain would be in the front rather than in my rear end. And the constant sense of having a UTI reminded me of all those years of rectovaginal fistulae when the transfer of bacteria caused incessant UTIs and neverending trauma.
All of this pain and urgency set off waves of post traumatic stress like I haven’t experienced since my last surgery 4 years ago. For the last year, I could barely get myself to talk about the IC until I myself accepted what was happening: yet another nebulous mast-cell / autoimmune-esque condition had hit me and it had hit me so hard alongside that COVID episode. I had bladder scan after scan and cystoscopies that left me with significant medical trauma being awake as they inserted a camera in my bladder. And I told myself I’m just sick and tired of suffering and does this ever end?
My urologist offered me Amitriptyline and later Nortryptyline to help ease the bladder sensitivity and the anxiety / sleep issues. My pelvic physiatrist offered me a pudendal nerve block and vaginal Valium + Baclofen suppositories for something he diagnosed as pudendal neuralgia in October 2025. All of this helped tremendously alongside weekly acupuncture and pelvic floor physical therapy. Physiatry also suggested a few supplements: Desert Harvest Aloe Vera Caps, Cranberry/D-Mannose & pumpkin seed oil, which have also been helping curb the symptoms.
But things still aren’t perfect; IC and pudendal neuralgia are yet another set of chronic illnesses for me to manage. And I worry if a strong virus set off this immune reaction, what happens the next time I catch a virus?
As I struggle with yet another IC flare these days, lots of questions are still swirling in mind with answers still TBD. Like, is IC an immune-mediated inflammatory condition? If so, why aren’t biologicals used to treat it? And why are antihistamines used to treat IC? Is the pudendal neuralgia from the IC or from a number of surgeries or is it from the endometriosis? Or does it exist completely separately from all of these?
A year later, I still don’t have the answers. I know I may never have these questions answered, but I do know I have to focus on optimizing treatment and controlling my pain levels so I can continue to own my conditions, no matter how many may accumulate and wreak havoc on my life.
As diagnoses accumulate, I continue to take things one day at a time and focus on my health, my work, and my family. But the specter of the horrors of post traumatic stress still permeates. Traveling during recent trips did help lift my spirits and even though there were urinary issues a couple of the days during recent trips to India and Singapore, I managed to get by, which helped to build my confidence. And that’s all I can keep doing…trying my best so I can be the best version of myself in spite of illness.
So, own your Crohn’s, own your new diagnoses, and take charge of your care so you can live life to the fullest <3
** None of this blog post should be construed as medical advice. This is my personal experience and cannot be extrapolated to other inidividuals and their experiences.
