My Story

I remember the day it started – August 6, 2010 – I woke up with an ache in my bladder. I thought to myself, “Gee, I guess I must have a bladder infection. That sucks.”

If only that’s what it was. If only it was just an infection. I could have gotten a prescription for antibiotics and the symptoms would have disappeared within a few days.

If I had known then what I know now – that this deep ache, this burning sensation would not go away, not for a single day, instead getting much, much worse, and leading to multiple tests and operations, medications, and useless elimination diets and homepathy and acupuncture and at least one trip to the ER, I think I would have completely despaired. A lot has happened in my life in the last four years, both good and bad, but through it all, I’ve never been pain-free, not for one day.

As it was, after I found out from a routine urine test that I didn’t have a bladder infection, I immediately started to worry, especially since the ache wouldn’t go away, even getting worse at night, and my doctor finally referred me for an ultrasound. I had to wait a few months, lying awake at night often wondering if I might have a tumour or something. I wish now that I’d had something that was operable. I had the ultrasound that autumn, and it showed nothing physically wrong with me.

My family doctor then gave me a prescription for Pyridium (Phenazopyridine), which did nothing, and which I later discovered has been linked to bladder cancer, bone degeneration, and other serious side effects, so I immediately stopped taking it.

Next it was a referral to a urologist who suggested I have IC and that I should have an operation – a cystoscopy with hydrodistention – under general anaesthesia. It would be a couple of months before the surgery – in February 2010 – and in the meantime the specialist told me to go on the IC diet. During the surgery they found a 5 ml calcium oxalate kidney stone at the opening of one of my ureters (the tube that connects the kidney to the bladder) and I when I woke up I had to pee out the the pieces of the stone they’d crushed in my bladder. I was peeing straight blood and what felt like shards of glass. I almost screamed.

I had relief from the pain for about two or three months after the surgery before it came back with a vengeance. I tried the diet restrictions (cutting caffeine, alcohol, citrus, etc.) but it had little effect. I saw a different urologist (the first one mysteriously quit his practice soon after I had the operation) and he said he was sure I had IC but wanted to do another cystoscopy – this one with only local anaesthetic – just to have a look at the inside of my bladder. This time the cystoscopy was painless and quick, but he could only confirm I had IC and prescribe Elmiron (Pentosan polysulfate) – the only FDA approved drug to treat this condition, which has serious side effects and only a 30 per cent chance of working.

I was again at a loss and in serious pain. I decided to go the natural route in 2011 and enlisted the help of a naturopathic doctor who put me on an elimination diet. No caffeine, no alcohol, no sugar, no dairy, no gluten, no fun. I was very good about the diet and about taking the various supplements and marshmallow tea she suggested. I had some relief from my symptoms, but not much. I tried another naturopath, who said I have leaky gut syndrome, and while I felt there was some headway being made towards finding the cause of my problem, the solution was overwhelming – a ridiculously strict diet – and I gave up after only a few weeks on all the expensive herbal supplements he had me taking. I tried yet another naturopath, who was more willing to listen, and who tried various techniques, including acupuncture in my hands and feet for pain management, but this again didn’t really do much to help my symptoms.

My doctor then referred me to a third urologist, who was at least more willing to listen and be somewhat empathetic, but who still had nothing to offer me except to do another cystoscopy to see what was going on and to confirm (for himself, I suppose) that I did in fact have IC. After discussing the possible options with him, we decided to go for another operation (cystoscopy with hydrodistention) since the first one did seem to help temporarily. Unfortunately, this one – in December 2011 – only gave me about two weeks of relief.

With my symptoms only getting worse, I went back to my urologist in desperation, and he said he thought I might have a bladder infection and wanted to do yet another cystoscopy (with local anaesthetic) and I submitted despite the pain, psychological torment, and tears it caused me. I did have an infection this time, and antibiotics helped the acute burning, but then I still had IC pain.

By the summer of 2012 my pain had become unbearable – the nerves in my groin and thighs being affected, as the stabbing and burning enveloped my entire pelvic region. One night, out of desperation, I went to the ER, where they gave me a shot of Dilaudid (hydromorphone), which only made me feel really dizzy and made my vision blurred and didn’t touch the pain.

I was at a loss. I saw another general practitioner to see if there were any other treatments or medications I’d not yet considered, and she gave me a prescription for Hydroxyzine (an extra-strength anti-histamine), which she said had helped some of her IC patients. I was willing to try anything so I started taking the pills every night, but they didn’t do anything to calm the pain.

In the last year, I’ve travelled some and found that being distracted, having fun, being relaxed, and avoiding trigger foods and drinks is helpful in dealing with the extreme pain, but nothing has put an end to the problem overall.

At this point the only things that help are to be very strict about what I eat and drink, and try to keep my stress level and anxiety from getting out of control. Meditation helps with this, if not the bladder symptoms directly.

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It wears on you, chronic pain. And it’s scary. Sometimes I think to myself, “I’m done with this. I can’t handle it anymore,” but I realize there’s no escaping it, and all I have left to do is to try to avoid flare-ups. On the days when the pain is at a low level I can manage just fine. Or, relatively fine. It’s impossible to know, to remember, what it’s like to feel no pain at all. Four years is a long time.

But today, Aug. 6, 2014, on the anniversary of my first sign of something wrong at age 28, I’ve decided to stop beating myself up for having this condition, for feeling that it’s something to be ashamed of and to stop abusing my obviously sensitive and ravaged digestive system by consuming things like beer and coffee, which I know cause me pain, simply to fit in socially and to feel normal. It’s going to be difficult, and I’m going to be tempted to throw up my hands and say, “Forget it, just pass me a beer and let me drown my sorrows,” but I know that’s impossible, because unfortunately the very things that that many people do to relieve stress and avoid pain (both physical and emotional) are some of the very things that cause me the greatest agony.

So it’s time to really make a start in changing my diet and my stress level, and how I think about chronic pain and what can be done about it. I know IC can be cured, and I’m not going to give up until I’ve found a way to heal.