Sometime around puberty is when I first showed signs of bladder problems. Typically, I noticed an increase in volume, frequency, and urgency after I drank coffee, tea, or soda. At first, my parents thought I was just being difficult or trying to get out of doing things. But then I begin to get nervous when traveling or going to events because using the bathroom frequently as a pre-teen was embarrassing. My symptoms only flared a few times a year, but it was still enough to prompt my parents to take me to the doctor around the age of 15.
My first appointment was with our primary care physician. After running several blood tests and ruling out diabetes, he diagnosed me with an over active bladder. I was sent home with OAB meds, which caused retention, so I promptly discontinued them. From here, my doctor sent me to the urologist. The urologist mentioned IC, but thought I was too young (why do doctor’s always think young people are immune to everything?!) and since my symptoms weren’t severe and I wasn’t experiencing pain that it probably wasn’t IC. He then sent me to get an ultrasound of my bladder which was torture. The verdict after all this was that I had a very small bladder and a cyst on my left ovary. The urologist said this could be contributing to my symptoms and recommended avoiding things like soda, tea, and coffee and practicing bladder retraining or “holding it” to help stretch my bladder. I took his advice and managed to control my symptoms enough that I never went back to the doctor for bladder issues for many years. I was also put on the pill for severe period cramps around this time that could’ve helped with the cyst. Whether or not my symptoms were true IC yet, a small bladder or over active bladder, caused by hormones or a cyst, I didn’t care as long as I felt fine. And I did for quite some time.
During college my symptoms practically disappeared and by the time I graduated I hadn’t shown any signs of bladder problems in years. I truly thought I grew out of whatever it was. I even began drinking coffee again and it didn’t seem to bother me. As far as I knew, I was healed from whatever had caused my weird bladder symptoms during those teen years. This lasted for about 7 years – and then out of the blue the mysterious bladder symptoms came back.
In the summer of 2011, I began having UTI symptoms. I bought some cranberry juice and drank it along with a bunch of water and my symptoms seemed to subside. However, in the fall my symptoms returned. I decided to go to the doctor in case I hadn’t gotten rid of the UTI. Of course, my urine culture came back negative for infection, but my doctor gave me antibiotics, just in case. I took those and my symptoms seemed to subside once again. However, within a month they returned. I headed back to the doctor and again my urine culture was negative. My doctor then gave me OAB meds and told me they should calm whatever was causing my bladder symptoms – that maybe I’d just been drinking too much coffee. He also mentioned sending me to the urologist if this didn’t help. Ugh! All those old memories came flooding back. I discussed this with my mom and she reminded me of the time I took OAB meds in the past and suggested I wait to take them. I decided to drink more water and cranberry juice and wait it out.
Come the end of November, my symptoms had increased so badly that I could barely get out of the bathroom one afternoon at my mom’s after eating a simple bowl of chicken noodle soup. My mom insisted I call the urologist immediately. After relaying my history to the urologist he immediately brought up IC. He recommended exploratory surgery, combined with hydro distention, to diagnose and treat the suspected IC. I made the appointment for surgery, but left in tears. I went home and started doing tons of research on IC. I quickly learned of places like the IC Network and the IC Association, which were of great help. I wasn’t keen on surgery or hydro distention after what I read on the ICN and ICA websites, so I postponed the surgery. In the meantime, I was scouring IC boards to read about others’ experiences and came across a local woman with IC and contacted her. She was being treated by a local OBGYN, Dr. Smith, who my sister saw throughout all of her pregnancies. So I decided to get a second opinion from him.
That winter was full of so many tears and lonely days. I couldn’t get in to see Dr. Smith until mid-January, but with my new friend’s encouragement, the support of my family, and God’s strength I made it through. Upon telling Dr. Smith my life story, he was in agreement with an IC diagnosis. The best part was, he was willing to treat me based on symptoms alone. We started with Elmiron and Hydroxyzine. I noticed some improvement in the beginning, but after being on Elmiron for 9 months without drastic improvement we decided to discontinue the Elmiron. Meanwhile, I continued to research the IC diet and supplements that support the bladder and the body’s ability to heal itself. I found that diet along with a few choice supplements helped ease my symptoms. Many of which I mention in my YouTube videos and that I will share in a future post.
That February, I began developing a rash on my stomach and thighs. I saw my primary doctor and an allergist and neither could determine the cause. My doctor recommended changing soap, laundry detergent, etc. and even eating gluten free, as I also have a thyroid issue and he said many people with thyroid issues have gluten sensitivities. I took his advice and gave my body some time to adjust. However, over the next couple of months I also became severely lactose intolerant. This was very frustrating since vanilla milkshakes had not only been soothing to my bladder, but helped maintain my weight in the beginning of going on the IC diet. By summer I had had enough, and per recommendation of a friend, began seeing a Naturopathic doctor based out of town. One of the most helpful things he did was give me a product called Bladder Ease. I noticed relief within a couple of weeks on this product. He also gave me supplements to support my thyroid. He wasn’t certain what caused the rash, but suggested eating gluten free, as well. I was not good at this gluten free thing, but decided to keep trying it.
My new regimen of supplements seemed to help, but over the next couple of months I developed a new symptom. My lips began peeling nonstop. Not just chapped lips, but nasty, white, painful, scaling flakes. During this time, I decided to try something I read about in the book, “Along the Healing Path” – NAET treatments. I met a local lady who said it really helped her and I believe it did, but just think my bladder wasn’t ready for it. I went to a few treatments, but would have a temporary increase in IC symptoms afterward so it was difficult to manage with work, etc. Not to mention, it was very expensive for how often I had to go. During this time, I quit taking Bladder Ease and hydroxyzine to give my body a break and to ensure neither had contributed to any of the new symptoms.
By winter, my naturopath appointments were difficult to get to and, by this point, I would get so nervous for any doctor’s appointments that I never wanted to go. I hated driving all that way by myself. Too much time alone in a car while driving to one more appointment stressed me out. Instead I found a naturopathic doctor in town and decided to give her a try. She, of course, ran more tests and lives and dies by the mantra that all sickness/ healing stems from the gut. Her testing revealed I had an Aeromonas Veroniii infection in my intestines, the MTHFR genetic mutation, and several food sensitivities. She wanted me on an even more restrictive diet and didn’t seem very knowledgeable about IC so I took these new results to my primary care doctor. He was in agreement that I needed to treat the intestinal infection and the MTHFR mutation. However, he didn’t think I needed a drastic diet overall, but still recommended the gluten avoidance. I was treated with an antibiotic and my stomach issues seemed to be helped by this. Even my dairy sensitivity was slightly lessened. I also began a methylfolate regimen to support the MTHFR issue.
After a round of antibiotics I developed a yeast infection, which flared my bladder big time. I went through a couple rounds of Diflucan over the course of a few months and that very quickly settled my bladder down. When I saw Dr. Smith months later to catch him up on everything, I decided to go back on hydroxyzine, Bladder Ease, and a few other supplements, and to avoid not only gluten, but eggs and dairy. I seemed to notice those foods greatly affected my rash and peeling lips. That brings me to today and where I am in my healing journey. I am still on my way, but have learned so much and believe there is hope for healing and leading a normal life… or whatever that looks like to you. A couple other things I wanted to mention were that I tried Physical Therapy for several months, but didn’t notice a huge improvement and it was getting pretty expensive. I also tried Elavil, which helped my bladder symptoms, but made my moods feel off so I discontinued it. My doctor said Elavil helps with the nerves in the spine that go to the bladder so there may be something there – I did break my tail bone as a kid and didn’t know until many years later. There are so many different thoughts on what causes IC. Ultimately, everyone has to find what works for them and their body. It took a long time for my body to breakdown so it may take a while to build it back up. But I won’t give up or accept defeat. My life is worth it! Even little victories are huge on the road to health. My body has been speaking to me all these years and I am learning to listen to it and work with it so I can live a full life. It’s worth it, even when it’s hard. So I encourage you to fight for your quality of life and take your health into your own hands. This is my journey and you may not agree with or understand it, but you have your own journey and road to walk down and I have mine. And that is okay. I hope you can relate to some of this and be inspired to keep moving forward no matter how slow or dark the journey. Because there is always HOPE!
p.s. Stay tuned for a future post featuring my current IC regimen, how I manage my IC now, and where I plan to journey next.