Living with Interstitial Cystitis – A pain story

I can barely recall the many fairy tales I’ve been told in my early days. But I do know that they all had a happy ending. It’s only when I’ve grown up and the curtains hiding the harsh world were drawn apart, that I realized… the real heroes reside in stories without happy endings. The true tales of strength don’t involve fairies, but people living on the other side of fair. 

Here is one such story of Arun Dahiya from New Delhi. 

Arun is young, fun-loving, ambitious and chronically sick. She is suffering with multiple illnesses, Interstitial Cystitis followed by Fibromyalgia and Irritable Bowel Syndrome. None of these conditions have a cure. 

What’s this peculiar illness?

Interstitial Cystitis (IC), often referred as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain, is a tricky condition. It’s tough to diagnose, and though treatments can make life with it better, there’s no cure.

How did this happen?

December 2012, was a turning point in Arun’s life. She felt intense pain and was urinating blood. Taken aback, she visited several doctors who told her that it could be an infection and hence, put her on cycles of antibiotics. But that didn’t wash out the pain. She changed a number of doctors but the pain stayed on, as a stubborn presence. 

When she was on the brink of losing hope, she came across a urologist who diagnosed her with Interstitial Cystitis (IC). It’s a disease that is tough to diagnose as all the test results show that everything is normal although hidden underneath, is lots of pain, burning, frequent urination, food sensitivities , etc. After being diagnosed, she was glad that her way out had opened up, but she soon realized that she’d just stepped into an eternal maze. This changed her life forever. Her daily symptoms included sharp stabbing pain in the bladder and urethra region, frequent urination and sometimes urine retention.

She realized that the pain wasn’t a guest, but was here to stay on as an invisible part of herself.

Her life was never the same, and it never would be. Like every teenager, she loved junk food and she had to completely give up on almost everything she loved – coffee, tomatoes, chocolates, everything citrus, spices, carbonated drinks, gluten containing grains like wheat etc. That however, turned out to be a blessing in disguise as the diet greatly sustained her health. It included smoothies, veggies, low acidic and low oxalate greens.

To battle IC, she was put onto several medicines like pentosan polysulfate sodium, gabapentin , etc, out of which she considers tramadol as her best friend on bad pain days. Due to these medicines, she passes out for most of her day, stays fatigued, is lost in a hazy fog and has also put on a lot of weight. She says that the meds keep her alive, but steals her of her life. 

To ease her symptoms, she went through cystoscopy and hydrodistention, where they put a scope in the bladder to look into it. The doctors found hunner lessions, which are ulcers in the bladder that ooze blood. They need to be burnt using electric current (fulguration) to get rid of them. This gives a relief for sometime, as they have a tendency reoccur. This procedure is pretty painful as you read. So are the other procedures she had to go through,  superior and inferior hypogastric plexus nerve block, is another procedure she went through to ease her pain. She describes it, “Like being poked with a hot searing iron rod, But worth the pain because of the 30 percent relief after five painful years.”

In her perspective, IC is as painful as the fourth stage of cancer. She was already living with the constant intensity of pain, when she got diagnosed with Fibromyalgia, another chronic pain condition. She now also had painful joints that made simple daily habits like getting up, walking, and sitting for long also very challenging. 

How did the disease change her life?

She was a bright 19-year-old teenager with a head full of dreams and a long way ahead of her when out of nowhere, the disease took over everything and it all began to spiral downwards. Now, her every day is riddled with uncertainty and only a huge amount of pain to look forward to. Her day starts with pain and ends with it. While the rest of her peers are enjoying at the prime of their lives, hers had become an endless run to various doctors and specialists. Although she feels blessed to have a good team of doctors who genuinely care for her, she is tired of the infinite recurrence of the cycle of visiting them. Currently, she is seeing a psychiatrist, urologist, gastroenterologist, gynaecologist and a therapist. 

This disease has turned into a barrier in all her relationships with everyone. Her social life has died down to a zero. She can no longer plan hangouts with her friends. A simple and normal day out  leaves her in huge pain. She is no longer the person her world once knew. The worst impact the disease had, was on her emotional well-being. She accepts that she is depressed and sick of it all. Living with a chronic illness isn’t easy. When you lose hope, you lose sight of all meaning attached to life. Sometimes, all she wishes for is the sweet release of death.

All she can see for herself is days and days of pain – an endless, senseless, ceaseless pain.

IC hugely impacted her career too. All those dreams she had worked for got crushed under the weight of the intense pain. She lost her energy and her sense of purpose. On various days, she cries a lot, withers in pain, changes positions and lives with the burden of guilt. Sometimes walking, laying down and sitting is also a painful austerity.

Despite everything, she says that, “I am one fighter woman. And there is nothing that can break me. My spirit is yet alive. This invisible illness is a part of my life and it’s perfectly ok I still have lots of hope with me. I am a warrior. All I want through this post is to create awareness about the disease and let others see some invisible parts of this disease. I don’t want you to feel bad or sorry for me. I just want to be understood and accepted as before.”

Arun has turned 25, today. Yes, It’s her birthday today and she is hospitalised, yet another pain flare up leading her to reach emergency. Rather than enjoying a Birthday cake, she is having cocktails of medicines as a gift. She is still fighting it and she will keep on fighting it.