Kiley’s Story
Dr. Pugliese,
As per your request, I’m sharing my story with you in hopes that this will reach someone that is suffering like I was. I’ll never be able to fully tell you how grateful I am for you and the impact you’ve had on my life. Thank you for being an incredible doctor and for truly caring about my case- thank you for taking the time to listen to every detail and assure me that we would find an answer. I can’t tell you what those words meant to me at the time. You brought hope back into my world when I thought it was completely lost.
For two years I was relentless in my search for answers and a cure to the pain that had left me completely devastated. In August of 2017, I had symptoms that aligned with a lower urinary tract infection. I had a history of UTI infections leading up to this, but nothing that a course of antibiotics wouldn’t clear up. I quickly went to my doctor for a urinalysis, but to my surprise, the culture came back negative for any bacteria. My doctor gave me some antibiotics in case an infection was just beginning. I took the medicine, however the sharp pain in my urethra and painful urination continued to get worse. I scheduled an appointment with a urologist, feeling sure that he would have the adequate tools/procedures to find this infection that my GP had somehow missed. Again, my urinalysis came back clear except for a small amount of hematuria. The urologist ordered a CT scan which came back clear. And then a cystoscopy (without any anesthesia) and I couldn’t tolerate the pain. My urethra felt as though shards of glass were lodged into it and I asked the doctor to stop the procedure as tears were rolling down my face- he sent me home with amitriptyline and tramadol. Little did I know this would be the beginning of a very long and winding road in and out of doctor’s offices.
The pain worsened with time and I started experiencing muscle spasms all over my body, vaginal/vulvar nerve-like pain and urethral spasms. I couldn’t wear underwear or any tight clothing without feeling bothered- intercourse and intimacy were impossible. My pelvic floor muscles were tightening from being in pain and I felt sensations of unwanted arousal- this was extremely distressing and it was difficult to discuss this with doctors.
Within two years, I visited over 20 specialists. One all the way across the country in Arizona. Pelvic pain specialists, multiple urologists, gynecologists, neurologists, endometriosis specialists, interventional radiologists and pelvic floor physical therapists. I was diagnosed with interstitial cystitis after a cystoscopy (under anesthesia) which took a biopsy of my bladder. I was also diagnosed with endometriosis and had a surgery in 2018 and 2019 to remove it- we were hopeful that the urethra pain may have been linked to the endometriosis on my bladder but unfortunately the pain continued.
I had multiple nerve injections (bilateral pudendal nerve, peri urethral and dorsal clitoral blocks), bladder instillations with catheters, a biopsy of my vulva, injections in my spine, 9 months of pelvic floor PT, acupuncture, CT scans, MRIs, more pelvic exams than I can count. I still hardly had any answers. The physical pain combined with the fear that I may never heal left me with crippling anxiety, depression and panic attacks. My world felt dark and there were so many nights that felt like they would never end.
AND THEN I MET DR. PUGLIESE. It was a God thing, really. I went into his office feeling really nervous because I knew he was my last chance. How would I explain all of this to him? I prayed and prayed over the appointment. And when he entered the room there was something different. He listened intently to my story, asked lots of questions and then presented his plan of action. He went on to tell me about DNA sequencing testing and that it provides a more accurate culture for multiple infections. He assured me that we would figure this out and for
the first time, I felt relief and hope wash over me. He left the room and I cried tears of joy. Thank you God for this doctor!
The next week, we met again to discuss my urinalysis results. 4 bacterial infections were detected. FOUR. He prescribed the appropriate antibiotics and I was on my way. Within a few weeks, I started to notice a difference in my pain levels. I’ll continue the antibiotics for as long as he recommends (it could be up to a year). Slowly, I’ve started getting my life back. I’ve weaned from all of my prior medications. I’ve been able to exercise and run again. I can wear underwear and jeans! My husband and I have been able to enjoy intercourse and that has been such a beautiful blessing.
I’m not symptom-free yet and I hope and pray that one day I will be. For now, I’m focusing on the immense amounts of progress that have been made over the last 3 months. There are so many men and women suffering with a diagnosis of Interstitial Cystitis and I know how disheartening it can be to receive that news. I hope that this encourages others to have further testing (DNA sequencing) done to see if they have underlying embedded UTIs causing the symptoms. Don’t give up!
