It's helpful for me to compare notes with other IC gals...sometimes how they 'got' IC helps me better understand my IC.'s my bladder history leading up to the onset of IC.

I believe that the variety of Interstitial Cystitis that I have is primarily the Autoimmune variety. There are other varieties like hormonal imbalances (I have confirmed that this is indeed part of the problem for me), oxalate problems (I was tested for this, and I don't have it), pudendal nerve issues (my chiropractor and I think this is not an issue), endometriosis concerns (I had a laparoscopic surgery and ruled this out), prior pelvic surgery (I did have an appendectomy before my IC, but at this point I don't think it is really the cause of my IC), Candida overgrowth (pathogenic systemic yeast--of which I don't think I have), and more.


First, I think it is interesting to note that I had a slightly stressful childhood. I came from a loving family, but we were very poor, and this caused some marked stress in my childhood. Childhood stress is a very common link among IC patients, and recognizing it has helped me overcome 'stress' habits and tendencies to internalize stressors rather than eliminate them. We all know Stress & IC are best friends. 

Pelvic surgery. I did have an appendectomy before I had children, however, I don't feel that my surgery, which removed a burst appendix (owie!), had any significant affect on my IC. I actually remember that post appendectomy I had some of the most peaceful-body years in my adult life. I've combed through my medical records and created a timeline of significant issues/labs, and not much occurred here post-surgery.

Next comes my bladder. I never really had any bladder problems in my life, until I got married. Sex caused reoccurring bladder infections and yeast infections. But there were just a few to note (maybe 3 a year?), and they weren't a big bother; antibiotics took care of the infections.

Enter suburethral diverticulum. When I was pregnant with my 1st, I had an amazing OBGYN who identified a urethral cyst called a suburethral diverticulum. It basically was a little sac on the urethra that would slowly fill up with urine every time I voided my bladder. Then, when the cyst was full and when I moved about, the now impure urine would basically get injected back into my bladder, and it caused a bladder infection. The OBGYN and I decided to wait until after the baby was born to undergo anesthesia and repair the diverticulum. Until then, I was on regular antibiotics for reoccurring bladder infections, and the doctor would drain the cyst by pretty much stabbing it with a needle. Ouch!

Once baby was born, the cyst was expertly repaired (these types of diverticula can be stubborn and they tend to come back), and the diverticulum never came back. I am often so grateful that I had a capable OBGYN.

But I think that at this point, my bladder had been compromised. It had been through too much.

Fast forward 2 years. I had just given birth to my second child, and I was dealing with rather annoying seasonal allergies. I now know that this was probably due to my immune system being compromised by leaky gut syndrome (which is strongly linked to gluten intolerance). At the time, I did not know I was gluten intolerant and that I was suffering from leaky gut. My diet wasn't horrible, but I was eating way to many sweets, antibiotic-loaded meats, pesticide drenched produce, and surely lots of wheat and gluten. I thought I was very healthy and later that year I even competed in 2 separate triathlons, with one of them being olympic distance. But in no way was I healthy. Seasonal allergies--of which I never had before--were a sign that something was up.

To deal with the seasonal allergies, and in an effort to get away from taking a daily dose of allergy meds (they made me drowsy, and I didn't like the idea of popping a pill every day), I turned to allergy shots. I went to an allergist who prepared me for the 'rush treatment.' Typically, allergy shots take 5 years. The first 2 years or so you come in to the allergist once a week and get an allergy shot. At each weekly visit during these first 2 years, the doctor increases the dosage of the shot, which is filled with a cocktail of environmental allergens to which you are specifically allergic. Once you've progressively built up to the maximum dosage, you begin the remaining 3 years: you come in once a month and get a 'maintenance dose' to maintain your allergy-free life. All this adds up to a lot of doctors visits.

However, if you opt for the 'rush treatment', like I did, you fast forward those first 2 years of coming in once a week by instead rushing them into one single day. The doctor prepared me by loading me with allergy drugs for 4 days before the rush treatment, then on the day of the treatment, he gave me 3 shots every 15 minutes for 8 hours. They'd look at my injection sites and make sure it wasn't swelling too much, and if things looked good, they'd continue on with the 8 hours. 3 shots every 15 minutes for 8 hours. That's about 96 shots! I know. Just reading this is ridiculous. Stupid, stupid, stupid me!  I so regret doing this!

It was that month--after I did my rush treatment--that I first went to the OBGYN complaining about a "bladder infection," which I later realized was really IC. It is my belief that the allergy shots further compromised my immune system (my leaky gut had already been depressing my immune system) and gave me Interstitial Cystitis. I also understand that histamines play a large part in inflammation, and for someone like me who had a compromised bladder, those injected histamines were triggering my bladder.

I was very lucky to have yet another very capable OBGYN (well, I interviewed several before picking him, so I guess luck had little to do with it). As soon as I started coming in for more  and more bladder infections, he started sending my urine out to get cultured. You know the story. A urine culture tries to grow bacteria in the urine, but if no bacteria grows, then your urine is pretty much clean, and you do not have a bladder infection. As soon as he realized that my results were negative, he sent me to a pelvic urologist (his wife oddly enough), and she diagnosed me with IC. This process took me only a few months, and I realize that such a quick diagnosis is not common among IC patients.

My diagnosis procedure was by-the-book: She looked inside my bladder with a camera (the procedure is called a cystoscopy), did a hydrodistension (filled my bladder up with liquid which allows her to better see the bladder tissue), and then conclusively identified my IC. She said that I had "severe Interstitial Cystitis".

Hydrodistension is controversial in the IC world because it can and has damaged some bladders. I felt wonderful after the hydrodistension, and thought that this would fix my IC troubles. But, unfortunately, shortly there after, I was again flaring up with IC symptoms, and even worse, I had my first sight of gross (visible) blood in the urine.  I think it's interesting to note that the only other times in my life that I had gross blood in my urine was 3 years later, after a laporoscopic procedure (to identify possible endometriosis).  I think that the cathedar jarred my urethra and perhaps caused some damage.  Later, my doctor and I decided to do a second hydrodistension. Similar to my experience with my first hydrodistension, I again found gross blood in my urine within one week after the procedure.  Each of these 3 procedures resulted in visible blood in my urine within one week post-procedure.  Based on my own personal experiences, I will not be doing any more cathedars, hydrodistensions, or minimally invasive procedures unless absolutely necessary.  I don't want to further disrupt an already weak and finicky organ.  Case in point: I had foot surgery this month due to an old sports injury, and to avoid the cathedar that would be placed when I was put to sleep, I opted to stay awake for the procedure and do the local anesthesia on the foot. Getting local anesthesia on my foot was hell fire on my feet and extremely painful, but I'm committed to protecting my bladder at all costs.

Current Status:

Where am I now as far as pain goes? Today, I'm generally symptom free. I plan to explain how I reached this point throughout this blog. I probably feel about 5% pain (on a 100 point scale) a few times a week except for the week before my period begins. Just before my period starts, I have to do some hard core flare-maintenance to keep pain under 20%.  So, I am not yet in remission, which is my goal. I know all too well how easily I can slip and be back to where I was before. Until then, I consider my IC journey to be successful because I am practically pain free, and I'm completely free of synthetic drugs and their side-effects.


My thesis statement about IC is that this disease is a systemic issue. It is not merely a broken bladder or a GAG layer gone wrong, but IC is here because other parts of my body are weak, and when the body is weak, your most vulnerable organ suffers.

I hope to be careful in how I present the information on this blog. I don't like inducing fear when discussing the pro's and con's of any idea or treatment that I've chosen.  I find that when I'm overcome by fear, I cannot make objective decisions about my health. And to me, objectivity is key. I always push myself to think like a scientist and to never make any decision based on fear.

My disclaimer is that in no way am I trying to tell you how to treat your IC. Instead, I hope that my story will lead you to learn more about your IC and your healing.

Finally, it would be negligent of me to ignore the fact that I'm deeply spiritual, and I know that there is a higher power guiding me in my IC journey. It is my challenge to listen to the inner promptings God gives me as I conduct research and try to heal myself from IC. Also, my belief system allows me to pray, meditate, and de-stress. This is also a valuable aspect of my IC healing. I'm very grateful for this peace I have in my life.

It is my hope that by sharing my IC odyssey, you will find connections to heal your own body. It is my hope that we will see IC a little less, and that someday, we won't see IC at all. 

June 15, 2013

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