Interstitial Cystitis

Joana Bartlett
Written by Joana Bartlett

Interstitial cystitis is a chronic condition which affects millions, both men and women, although more commonly women. It can be very difficult to distinguish the symptoms between a urinary tract infection and an IC flare as they feel similar. The symptoms of IC are urinary pain, burning, pressure, frequency, urgency lower pelvic pain. Some have all of the symptoms and some have just a few.

Diagnosis of IC can be fairly lengthy, but it is the presumed diagnosis for those struggling with urinary symptoms for 6 weeks or longer, once infection has been ruled out. In order to get an accurate diagnosis, doctors should start by reviewing your history to check for any trauma, pelvic injuries, pregnancies, accidents etc and want to know if you have had any other painful pelvic conditions or if there’s a family history of IC symptoms. They’ll also want to get a baseline of where your symptoms are with void numbers daily, exact symptoms, the location of them, and severity of pain, pressure and discomfort should be taken into account. Following this, you should have examinations to look for other conditions such as endometriosis, vaginitis, or prostatitis which can mimic IC symptoms, as well as a gentle pelvic floor examination. Typically, you’ll be asked for a urine sample to check for any infections, STDs and vaginitis. Following this, if everything comes back clear, an IC diagnosis is given.

Dr Christopher Payne proposed a new sub typing system in 2015 which shows the large diversity seen among IC patients. Some patients may fall into one category or many, but it’s important to understand the wide variety of factors which can affect symptoms.

Subtype 1 – Hunner’s Lesions: This is seen as the most severe form of IC and affects 5-10% of patients. These are wounds on the bladders which show severe inflammation. They can be incredibly painful and require a strict diet and very specific treatments.

Subtype 2 – bladder wall injury: These symptoms tend to start after chronic UTIs, chemotherapy, unhealthy diet, or chemical exposure. This is where the bladder wall has been injured and so the urine penetrates the tissue causing irritation.

Subtype 3 – pelvic floor: This can be from childbirth, repetitive pelvic floor trauma (cycling, falling), general trauma to the pelvic floor which causes the muscles to tighten around the bladder, nerves, blood vessels which can cause bladder symptoms and general pelvic pain. Pelvic floor therapy is thought to be one of the best management therapies for IC and research has shown it to be more effective than oral medication or bladder treatments for many patients.

Subtype 4 – pudendal neuralgia: This is when muscles are so tight that they are pressing on the nerves. It’s also known as bike rider’s syndrome, and sitting can become very painful, along with painful arousal sensations. 

Subtype 5 – chronic overlapping pain conditions: This happens when patients suffer with more than just IC, this can include IBS, vulvodynia, prostatodynia, fibromyalgia, TMJ. Those who have two or more of these conditions are thought to have maladaptive nerves in the central nervous system and brain. For some it is hereditary, for others it is the result of injury, trauma or chronic pain. It is really important to calm down the nervous system to restore it to proper functioning for all with IC, but especially those in this category. Mind-body medicine is incredibly effective with pain management.

Managing IC is extremely individual. Going through the journey, we often spend hours reading online and in forums which can be incredibly daunting and can leave us focusing too much on other people’s journey and not our own body. Doing a full elimination diet is crucial, most find they have 5-7 dietary triggers but it’s important to work out your own specific ones and not stay on the IC diet long term. Focusing on mindfulness can be very impactful for symptoms too, bringing in some meditations, yoga, progressive relaxation techniques, etc. Ultimately, in most cases of IC, the bladder is completely healthy, so bladder centric treatments are usually less helpful. Figuring out what’s driving your symptoms is very important for managing symptoms long term. One thing to take is that IC symptoms don’t have to last forever, and it is very possible to live a very normal life even though you’ve had this diagnosis. IC Is not a life sentence.

Main photo by Engin Akyurt