Your urologist has just uttered four words to you that will change your life forever (but you don’t know it yet) – “You have interstitial cystitis.”
It’s hard to know how to react.
You have no idea what this means and the tone of voice is neither sympathetic or light.
You wonder if it’s something a round of antibiotics will cure, or perhaps a standard surgical operation.
“I’ve never heard of that before,” you finally manage to respond. “What is interstitial cystitis?” (insert severely improper pronunciation here).
What is interstitial cystitis?
If you were lucky, your doctor took the time to thoroughly explain the chronic inflammatory process involved in interstitial cystitis.
In my case, I was just told that it was a chronic disease involving inflammation of the bladder wall, with no explanation as to the potential cause or cure. The disease could progress =over time, or spontaneously improve for a few days to a few months, but it will be with me forever. F-O-R-E-V-E-R.
I felt like I was entering a marriage contract with a horrible man against my will and the rest of my life was looking pretty darn grim.
The western medical perspective
The medical community considers interstitial cystitis to be idiopathic. This means that there is no known cause. If there is no known cause, there cannot be a known cure.
It is in the same category as a host of other 21st century “mystery” chronic conditions, such as fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome.
The holistic health perspective
From a holistic health perspective, interstitial cystitis, like any other condition that has become chronic, is a result of several imbalances in the body. There is a potential for healing to occur if the body is brought back to a state of balance.
There is no one specific cause of the inflammatory process involved in interstitial cystitis, but rather a number of factors or “triggers” that contribute to the disease state.
Each interstitial cystitis story is unique, as is each healing journey.
We may have similar symptoms, triggers and experiences, but no two people with interstitial cystitis have the exact same imbalances and even if they did, they may still require different treatment to get to the root of the disease.
When inflammation is helpful
Acute inflammation in the body is an important protective immune response in the presence of a trauma, chemical agent, microorganism, allergen, foreign substance or physical agent.
In this response, the immune system will identify the infectious or dangerous substance, determine which cells are “self” cells (non-threatening) and which are “non-self” cells (threatening), assess the level of the threat and mount a response.
In a healthy inflammatory response, pro-inflammatory compounds are released only when needed and are then turned off with anti-inflammatory compounds when the threat has been sufficiently addressed.
When inflammation is harmful
In chronic inflammation, which is what occurs in interstitial cystitis, this same protective immune response occurs; however, it is not turned off completely and instead of being protective to the host, it becomes detrimental the tissues and cells.
It acts like a slow-burning fire, continuing to stimulate pro-inflammatory immune cells when they may not be needed. When we have excess immune cells circulating in our systems, they can damage healthy areas of our bodies.
When the stimulus is not removed, chronic inflammation ensues, which is the case with interstitial cystitis. As a result, a cascade of events, which are interrelated with each other, are initiated, resulting in a vicious, self- reinforcing cycle of persistent inflammation and recurrent injury to bladder epithelium.
The first step on the road to recovery
In order to heal interstitial cystitis you have to break this vicious cycle by removing all of the factors that are contributing to this inflammatory process, which might include food allergies, candida, heavy metals, chronic stress and even emotional trauma. These are just some of the stimuli of inflammation you need to evaluate.
One of the first things I did once I set out to heal my interstitial cystitis was to write down my entire health history (including physical, mental, emotional and spiritual events and experiences). I made a timeline of contributing factors with dates.
For instance, I wrote down when I had my mercury amalgam fillings put in, when I first noticed I was experiencing bloating and gas and when I had a close family member or friend pass away.
I wrote about my depression, anxiety and chronic fatigue and supplements or medications I had been on in the past.
By the time I finished it was about ten pages long. I wrote down anything and everything I could remember that might have contributed in anyway to my imbalanced state.
I encourage you to do the same. Start today. Take your time and be thorough. Put on your detective’s hat and dig deep. This is a crucial step in your healing journey. In order to understand where you are going you need to understand where you have come from.
I call my mini novel a healing journal. Give it a name. Write in pretty colours. Use a journal you absolutely love. Make it your own. Use it as a tool to keep track of your progress.
You are not alone
I know this can seem overwhelming. Trust me. I’m still updating my healing journal and probably will never stop. I write down when I try a new supplement so I can track any improvements. I write down when I feel different energetically and when I try a new food.
You may not know what to write down or where to begin. Just start somewhere. Think about when you first started feeling unwell (and I am not talking about bladder symptoms) because I believe that most of us had some signal that we were unwell maybe years before any bladder symptoms. It could have been extra fatigue or digestive distress. Maybe you were feeling more on edge for no reason you could pin point.
Write it down.
Stick with me
This blog is for you. It’s for every one of us with interstitial cystitis.
I will commit to writing one post a week on anything and everything to do with interstitial cystitis.
If there is any topic you want me to cover, let me know.
Is there something you are confused about or struggling with? Drop me a line or write me in the comments section below.
Until next time,
PS – Still not sure how the heck to pronounce interstitial cystitis? Click here.
Grover, S. et. al. (2011). Role of inflammation in bladder function and interstitial cystitis, Therapeutic Advances in Urology, 3(1),19-33. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3126088/ (accessed July 7, 2013).