Episode: Painful Bladder Syndrome/Interstitial Cystitis with Amber
My journey with Interstitial Cystitis (IC for short) began in 2009, after a complication from Polycystic Ovarian Syndrome (PCOS). I had a cyst rupture on my right ovary and ending up in emergency surgery to remove both the cyst and the ovary. The evening after my surgery as the anesthetic was wearing off, I was doubled over in pain that was coming from my lower abdomen. I called for the nurse, and as it turned out, the catheter bag from surgery was full and with no where to go and an IV continuously pumping fluids, the urine had backed up into my bladder. My bladder had been distended, and while the immediate pain and pressure had been relieved, the damage had already been done. I spent a week in the hospital, but it wasn’t until my follow-up six weeks later that I let my doctor know about the symptoms that I was still having. I felt constant pressure, and urgency to go to the bathroom but when I would sit down, nothing much would happen, and then if I could go, a tiny bit would release and it felt like fire. She ran a test to see if it was a urinary tract infection. It came back negative, only noting that there was blood in my urine. She equated that to the trauma I had been through and didn’t think much more of it. After weeks of relentless pain, she finally referred me to a urogynecologist. He ran tests that tested the function of my bladder, and looked inside my bladder walls with a tiny camera. After all of that, he told me that I was a bit of an anomaly, and prescribed me some medication as well as some physical therapy, and told me that he wanted to do a case study on me. Just what everyone wants to hear, right? After some more time passed, and I still hadn’t received any relief from the medication, he recommended doing a bladder pacemaker. I remember leaving his office that day feeling overwhelmed, devastated, and in complete despair. There had to be an another answer for what I was feeling, right?
I spent the next two years of my life in and out of the bathroom, bed, and different doctor’s offices, and I still didn’t have help or answers. Those were some of the darkest times I have ever been through. I had never felt so alone, and so unable to articulate what was happening to my body. It wasn’t until my husband started working with a functional medicine doctor, and suggested that I make an appointment, that things began to turn around. I remember sitting in her office and just crying my eyes out (thinking she must think I’m crazy) because for the first time, someone was taking the time to really listen to me. She ran more tests, looked over the countless records that I brought to her, and finally gave me an answer that made sense. Something that finally put into words, all that I was feeling physically. In my case, inflammation was playing a huge role, so she removed gluten from my diet (I didn’t even know what that was ten years ago), went after my hormones, and within eight days I started to feel relief. I thought it was a placebo, or a fluke. How could something like my diet and hormones change the way I felt so drastically? Between finally feeling validated, and on the road to healing, I knew I had to share my experience with everyone and that’s when I went back to school to learn about health in a way that looked at the whole picture. That’s when The Autoimmune Advocate was created.
I have been living with IC for almost twelve years now, and it has been a series of ups and downs mentally, physically and, emotionally. In my case, treatment has been mostly successful at giving me some quality of life back, and while I have some pretty debilitating symptoms from time to time, I don’t take a moment outside of the bathroom for granted. I know it’s not that simple for everyone who lives with IC. It is a wide spectrum of symptoms and treatments, and for many, both are constantly changing. With no one way for someone to develop IC, it can make it hard to narrow down a diagnosis and that makes something already difficult, even more challenging. I have learned so much about my health over the past few years, but also about many internet strangers who are struggling with IC, as well as many other autoimmune-related conditions. There are a variety of aspects to IC that are uncomfortable to talk about, and I wanted to create a platform that not only provided support but also a place to share tips on how to advocate for yourself and give back to the community that has given so much to me. I found immense support online when I was searching for answers, and I will forever be grateful for the online community of people who understood what I was going through when I found it difficult to talk to my own friends and family. They helped me feel visible during a time that I felt invisible, and I will continue to give back in any way that I can so that others who feel like that, know that they aren’t alone. We may have never met, but I see you, I hear you, and I believe you.