What could it possibly be?
Rewind nine years back. Twenty-year-old me, anxious as heck, wearing a sky blue dressing gown, waiting amongst strangers for my turn to be called in.
It’s not a big deal I keep telling myself. There will be no pain. I will go to sleep and wake up with a diagnosis; an answer as to why I am waking up to pee every couple of hours and feeling a constant irritation in my bladder.
A solution will be handed to me by the doctor; after all, they studied urology for countless hours and surely understand what could possibly be causing such a drastic and annoying shift in my previously “normal” peeing habits.
I can’t help it. My mind goes there. What if it’s cancer? Yes, that must be it. What else could it be? There is no infection. No, wait, I’m not peeing blood. Wouldn’t there be blood? Oh mind, please shut up and stop going THERE.
I hear my name being called. It sounds like it is coming from a million miles away. Like I am at the bottom of a canyon and she’s yelling at me from the edge.
Did I mention I hate hospitals?
The procedure wasn’t so bad. I was deep under while they distended my bladder and inserted a tube with a little camera up my urethra to get a better look at the bladder structure and walls. The technical term – cystoscopy. No biggie.
An urge to urinate hits me like a ton of bricks.
I groggily rise to use the toilet. OUCH. SHIT. WHAT THE HELL IS THIS! As the urine leaves me it feels like I’m being sliced by a newly sharpened razor blade.
I was warned this might happen. But I didn’t know the pain would be so great. I’m not peeing again if this is what it’s like I sternly tell myself. The nurse assures me it won’t be as bad the next time. I roll my eyes.
Dr. G comes into the room. He’s flat faced and monotone. If there’s a personality to be found, I’m not finding it.
“I believe you have early interstitial cystitis,” he says. “There are early pettechial hemorrhages on the bladder wall.” He shows me an image of my bladder vs. a “normal” bladder.
I see what he means. Mine looks red and blotchy.
Interstitial cystitis I repeat slowly. Sounds pretty deadly to me.
He says, “You can try changing your diet by eliminating acidic foods. There’s a drug you can take called Elmiron. It works for some people and not for others and there can be side effects. See me in six weeks time and if your symptoms have not improved we can discuss going on the drug.”
“Excuse me,” I say timidly. “Are you saying that this will not go away?”
“Unfortunately, it’s a chronic condition. Symptoms can wax and wane, improve or get worse over time. But there’s no current treatment that leads to a cure. Like I said, see me in six weeks time.”
How’s that for hope?!
The beginning of the end
I never went back.
I spent the next week crying and doing copious amounts of research online trying to get a feel for the low-acid diet for interstitial cystitis. So many of my favourites were off limits.
No tomatoes! No cholocate! Most fruits are off limits. As a university student with little time or motivation to cook foods from scratch, this seemed like an impossible task!
Time stood still. I didn’t know how I could survive with such little sleep or if I could deal with having to urinate about every 30 min. during the day. Not to mention the constant pressure, discomfort and occasional stabbing pain I felt in my bladder.
This is the beginning of the end.
The Dark Years
For five years I struggled. I fell apart. I was depressed, anxious, sleep-deprived.
I somehow kept it together on the outside and remained a “functioning” member of society. Not many people knew about my interstitial cystitis and the people that did know really had no idea the kind of hell it puts someone through.
I hid it well. I didn’t want to complain too much or have the disease define me.
The low-acid diet helped with the frequency of urination and I was able to sleep for longer intervals on some nights, but I was barely managing.
I refused to go on any drug for it, especially since they have not been tested long enough and there are always unwanted side effects. Not to mention, any drug puts additional strain on the liver.
I tried Prelief and it did provide some relief if I indulged in acidic foods. However, I didn’t know it was affecting my digestion negatively (leading to a whole other host of issues).
Eventually I gave in and tried a prescription antihistamine and it did help provide some relief during the night.
I felt drowsy in the morning and wasn’t comfortable with covering up symptoms.
There had to be some relief out there. You see, I never believed the doctor that there was no cure for interstitial cystitis. The body has a tremendous innate ability to heal, provided we support it and work with it.
A light at the end of the tunnel
Then something life-changing happened. I came across Catherine Simone’s book Along the Healing Path. I don’t know how many times I cried while reading that book. She knew exactly what I was going through. She took a natural approach.
Catherine confirmed what I had suspected all along – it is possible to heal from interstitial cystitis. She is living proof of that.
The search continues
I was so inspired and moved by her book, that I ordered her other two books and any other book I could get my hands on that explored natural remedies and approaches to healing interstitial cystitis.
I didn’t stop there. I wanted to know exactly how diet and lifestyle contributes to the manifestation of the disease and how these same two factors can reverse the process.
I immersed myself in studying holistic nutrition. The more I studied and put into practice various natural healing protocols, the more I strengthened my understanding of chronic inflammatory diseases.
The past few years have been an integral part of my healing journey. I can say with confidence that I am on the path to complete healing.
My goal as a woman with interstitial cystitis is to create a support system and a hub where we can share our experiences with healing interstitial cystitis naturally. I want to know what has worked for you and what hasn’t. You need to express your emotions and be heard by other women who truly understand your struggles and can be with your through your triumphs. Let’s create a space of non-judgement, openness and support.
This is not to say that if you are utilizing main-stream conventional medicine to help manage your disease that you are not welcome here. I understand that these therapies have their place and can be necessary for providing pain and symptom relief in order to carry on with life. Even if you are immersed in a medical approach, natural remedies and lifestyle changes can make a HUGE difference in aiding your body to come back into balance and strengthen our body’s innate ability to heal.
My mission as a holistic nutritionist is to help you understand how critically important diet is to healing inflammation in the body. The current interstitial cystitis low-acid diet is wonderful; however, through my studies I have come to understand that we must take diet further and consider things like allergies, food sensitivities and metabolic syndrome. Therapeutic supplementation of nutrients and herbs is also an integral part of any healing protocol.
Now, it’s your turn. I would be honoured if you could share your story with me and the other women (and men) who are here to support you in your healing journey. If you don’t feel comfortable sharing in the comments section below, feel free to send it to me here. It will go to my inbox and won’t be shared with anyone.