Interstitial Cystitis: Living with Chronic illness

 

The Honeymoon Disease, UTIs, repeated water infections… different names for the same pain. But it’s a pain that, for so many of us, can switch from a mild inconvenience into something more serious. According to The British Association of Urological Surgeons, “women have at least one attack of urinary infection during their lifetime.” Even worse, 20% will suffer repeated attacks. 20%!

It’s sobering stuff, not least because they can make you feel so ill. The dragging lower back cramps, the feverish chills, the helpless urgency, the frequency that turns your bathroom into a torture chamber…

But what happens when the antibiotics stop working? All of a sudden the routine tests are coming back negative but the symptoms persist. You start to worry about news reports on antibiotic resistance. Even your GP seems baffled. He mutters about bladder ultrasounds and invasive procedures like a cystoscopy. Sometimes, if a GP is really clued up, he might mention Interstitial Cystitis. A referral is made to a specialist – a Urologist. Case closed. For them anyway.

But not for you. Because you’re still waking up five times a night to use the bathroom, and living with chronic pain is turning your home into a battleground. It’s a never-ending test of endurance. I will take the kids to the park today, you tell yourself, as you strive to maintain some semblance of normality for their sakes. All the while you’re spiraling into a panic because you spent last night googling your symptoms and now you’re convinced you have something really bad.

Interstitial Cystitis (or ‘IC’ as us pros like to call it) is best described as a chronic bladder health issue. I was 21 when I was first diagnosed. I was in my final year at university but my life was a revolving carousel of doctors’ appointments, all for a condition that the medical profession is still struggling to understand even now.

There are a handful of defining moments in my life. The real keepers are the births of my daughters and my wedding day. Then there’s another. Me, in my mid-twenties, pre-kids, teetering on the edge. I’m all alone in a film production office in Bucharest and i’m crying my eyes out. Not because of IC pain but because I’m on the phone to a stranger who’s kind and sympathetic, and, best of all, she really, really wants to help me. That wonderful person was an acupuncturist called Toni Tucker who specialises in treating patients with IC.

It wasn’t a quick fix. Some believe that acupuncture works by releasing disrupted channels of energy, qi, throughout the body. If so then mine were more congested than the M25. Progress was stop-start for months. Nor was it without personal cost. People don’t want to hear about problems like IC. I was ashamed. I was in pain. I cancelled social engagements so many times that eventually people stopped calling.

There’s an old Chinese Proverb that my husband once shared with me which, on reflection, reads more like an algorithm for life. It goes something like this: Start with a ‘1’. This represents good health. Now, for every material possession, for every great career achievement, add a zero. Some of us reach millions. Others thousands. But if you take that ‘1’ away, what are you left with?

Zero.

I thought about that a lot during my recovery and again in recent times. After six years of remission I find myself standing on the precipice of yet another health crisis. Months of stress and grief have left me with a pending diagnosis of Colitis or Crohn’s. But instead of raging about the unfairness of it all i’ve decided to speak up and share my story.

Taking inspiration from a fellow parent blogger, the deliciously outspoken Australian ‘Queen’, Constance Hall, who announced last month that she was suffering from Colitis, I’ve chosen to overshare my personal life and continue to raise awareness of socially unacceptable conditions such as ours.

Perhaps you’re suffering similar symptoms, or you find yourself ramming your head against a brick wall of NHS bureaucracy and perpetual waiting lists? Perhaps Constance Hall started something really big? The response to her admission has been astonishing. It’s like an out-pouring of relief across the world. All of a sudden oversharing is starting to trend.

As for me, I refuse to be defined by these ugly, abbreviated conditions that keep invading my life. So I say bring on the colonoscopy, bring on the sigmoidoscopy. I’m ready for you, chronic illness No.2.

And just like IC, I’ll defeat you too.
(With a little help from acupuncture)

Toni Tucker LicAc (Hons) MBAcC RM RSM is a practitioner of Chinese medicine acupuncture. She founded the Berkshire Health Clinic in 1993. www.tonituckeracupuncture.co.uk

*This blog post has also appeared in The Huffington Post

Mummy Times Two

5 Comments

  1. February 28, 2017 / 4:59 pm

    I hope you find relief for your problems soon – I have a friend with Crohn’s Disease and it’s horrible.
    I had a UTI when I was pregnant, but before that I hadn’t had one for about 4 years. I went through a few years of having them almost every couple of months and it was awful. I don’t think many people realise just how painful they can be. I remember sitting in the bath rocking, trying to soothe the pain and just not knowing what to do with myself.
    Well done for speaking up about this 🙂
    #PostsFromTheHeart

    • February 28, 2017 / 5:54 pm

      Thanks so much for your words of encouragement. I hope your friend feels better soon xx

    • Lisa
      April 7, 2017 / 8:33 am

      I know how you feel. I hope you are feeling better.

  2. Lisa
    April 7, 2017 / 8:33 am

    I hope you are doing better, and that you have found help for both auto-immune diseases. I was also diagnosed with IC, and then about 4 months later, UC. I now follow the Specific Carbohydrate Diet (as well as eliminating IC trigger foods). That has helped. I am on one medication (at half the prescribed dose) for the UC, and I only take Cysto-Protek for the IC. I think the diet has really helped a lot. It is a big pain in the rear though. It is awful to have not one but two auto-immune diseases. Best wishes!

    • April 7, 2017 / 9:41 am

      Thanks for your kind words, Lisa. I, too, have eliminated trigger foods. It took me a while to figure them out but I got there in the end. My acupuncturist did warn me about the possibility of developing a second auto-immune disease and unfortunately it happened this year. I hope we can both find some relief soon! Cx

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