“What is IC and what is it like living with it?” This is a question I get frequently asked.
To understand what living with IC is like, one must first understand IC as a whole. IC (Interstitial Cystitis) also know as PBS (Painful Bladder Syndrome) is a chronic bladder condition with no known cause or cure.
It causes long term debilitating pain and inflammation of the bladder and urinary tract. It causes some to experience urgency, frequency, and the inability to fully empty the bladder. It is more common in women but can affect anyone.
When people ask for an explanation of IC I always tell them to imagine urinating gasoline, shards of glass, or rubbing alcohol for an unknown amount of time. It could be days or it could be years. Comparable to the worst UTI imaginable, but everlasting.
IC/BPS is not an infection but can sometimes mimic a urinary tract infection. Some IC patients may have other health issues such as irritable bowel syndrome, fibromyalgia, pelvic floor dysfunction, vulvodynia and other pain syndromes. Some studies have linked IC to autoimmune disorders, but it has been debatable in the medical community.
Testing for IC is limited. There is not just one test to determine the medical condition. It is usually diagnosed by the process of elimination.
Only 5-10 percent of IC patient have a definite sign, Hunner’s Ulcers. Hunner’s Ulcers is a subtype of IC and debated to be in a class of it’s own.
IC can range from mild to severe with pain lasting hours for some and years for others. Some have compared the pain associated with IC to that of a cancer patient.
There is no cure for IC. It can be treated with a variety of medications and therapy. Therapy is trial and error as each patient reacts differently.
Some treatments include: pelvic floor physical therapy, bladder instillations, Botox injections, hydrodistention, and in extreme cases bladder removal.
Now that you have a background of IC I can answer the original question. What is IC and what is it like living with it?
All throughout my life I would see my doctor with complains of urinary pain and end up with a diagnosis of a UTI. Later the urine cultures would come back negative.
After the birth of my first child the misdiagnosed UTI’s turned into constant pain. An entire year of misery passed before I was at the end of my rope and my journey for answers and healing began.
My OB/Gynecologist was heaven sent. She guided me in the right direction and referred me to a pelvic pain specialist/urologist.
After lots of testing to rule out other diagnoses I finally received the news that I had IC. I was put on a handful of medications, a strict IC diet, pelvic floor therapy, and bladder instillations 3-4 times a week for 6 months.
Let me tell you about bladder instillations. THEY ARE PURE HELL. A catheter is placed into an already painful bladder, and then filled with a “cocktail”.
A cocktail can include a combinations of heparin, lidocaine, bicarbonate, saline, elmiron, or Dimethyl sulfoxide (DMSO). It depends on your doctor and their preference.
The concoction is to be held in the bladder for at least 30 mins or until you can not hold it any longer. It burns like fire and thanks to the opioid epidemic no pain medications are administered. It is nothing short of BARBARIC.
None of the treatment were working for me. As a last ditch effort my doctor recommended a hydrodistension. A hydrodistension is where the bladder is filled to capacity and then some to stretch the walls of the bladder and promote healing and decrease symptoms.
Hydrodistention doesn’t work for everyone. It can make some patients symptoms worse. If done many times, it can have severe side effects such as hardening of the bladder walls. In return, some patients will end up needing to have their bladder removed. It is usually reserved for patients in the end stage of IC.
I was desperate so I agreed to the hydrodistention. It sent me in the worst flair of my life and the pain lasted unbearably for weeks. I was not sure if I had made the right decision but there was no turning back.
Months past and before I knew it I was pain free. Alas, I was in remission! I was able to stop most of the medications except for two that I take nightly.
I have flairs periodically when I am stressed or eat something that triggers inflammation in my bladder.
I consider myself one of the lucky ones. Not all people with IC get any relief at all and some even commit suicide to end the pain. My hope is that awareness is raised and one day a cure is found so that people with IC can finally get some relief.
Living with IC is not the ideal life for anyone to live! With a great support system, a well educated doctor, medications, and following the IC diet, I can still make the most out of life. I am thankful everyday that I am well enough to spread awareness and hopefully shed a little light on IC.
To learn more about IC check out the following references: