The Traumatic Journey to Diagnose Interstitial Cystitis

I wasn’t prepared for it

Painting of “The Convalescent”, Gustave Leonhard de Jonghe (1829–1893)

Episode 01: The Pain I Didn’t Invite in My Life

Four years ago, I left my student apartment for a ten-minute walk to meet friends at a pub. Just after I started walking, a sharp pain passed through my urethra, and I felt the urge to run to the bathroom. As I was used to cystitis, I expected to feel a burn once on the toilet. I was quite surprised not to, so I took back the direction of the pub as if nothing had ever happened.

I was stopped halfway. A vivid burning sensation struck me again. I went home and canceled the party, thinking a urinary tract infection was definitely happening. I drank a few glasses of water and went to bed, hoping to stop the UTI before it spoiled my weekend.

The next day, still no cystitis. Confused at first, I came to believe I had managed to drown the starting infection, and I resumed my daily activities.

I spent the following week between college, my friends, and my boyfriend. We had this habit that millions of couples share: watching new episodes of our favorite TV-shows together. One evening, following the usual plan, we sat down on the couch to re-watch season 1 of Rick and Morty for the third time. As if there was no better series back then.

A few minutes after the episode began, I felt a stinging pain at the habitual spot. Unable to hold myself, I went to the bathroom once, then twice, then a third time. The first episode was not over yet, and I had already made ten trips to the toilet. It lasted for the whole evening.

I couldn’t understand what was happening to me. That evening, I was far from suspecting the pain would never go away.

Episode 02: Everything will be fine

When I was 20, I didn’t really care about my health. Born with the underrated privilege of being healthy, I naively thought that if I stayed out of trouble, I wouldn't have to worry about it until I got old. In fact, I was persuaded that no health issues could bother me until I’d turn 40, at the very least. Like all the privileged people can be born with, I took health for granted.

Of course, I knew there existed illnesses, sometimes chronic, sometimes lethal, that could occur at any time in life. But why would this happen to me instead of someone else? Why worry about the 1% chance of something terrible happening?

I had friends with whom I spent the best of my time, I was finishing my Bachelor, and I was accepted in a master’s degree in the city of my dreams. I had fallen in love with traveling, and planned a trip to Canada, after which I’d fly to Argentina and say hello to penguins in the “Tierra del Fuego”. Life was unfolding in front of me, just as planned.

How could I imagine I’d have to take my never-ending “fake cystitis” everywhere?

In 2 months, I’ll see the doctor again and this will be all over. He’ll find something, it’s not going to last. I have to be patient because everything will be fine.

After that evening, I urged my family doctor to find a remedy to my problem. He blamed an overconsumption of caffeine. Did he honestly think that I hadn’t already stopped drinking coffee?

A few months passed. I was exhausted, I was drained (at least my bladder was). I asked my father to book an appointment for me with his urologist. In France, we don’t have urogynecologists: urologists for men and women are the same.

Disconcerted by my visit, the doctor stared at his computer and barely look at me. He sent me home with a prescription for antibiotics. Looking back, I may have felt some skepticism in his shifty gaze. Was the unmentionable disease already in his mind?

I returned home relieved, thinking my ordeal was coming to an end. Sadly, it wasn’t. But I didn’t give up on hope when the first treatment failed. It was a mistake, but I’ll take a new appointment with the urologist, he’ll find a way, and in the end everything was going to be okay.

So I kept seeing the doctor, who kept writing new prescriptions. I have tested most of the bladder myorelaxant you can find on the market. Antibiotics? I’ve completed fifteen treatments, from a few days to several months, all without success. I tried electro-stimulation, anticholinergics, different pain medications, even acupuncture, only in vain.

Despite multiple failures, I kept repeating to myself “In 2 months, I’ll see the doctor again and this will be all over. He’ll find something, it’s not going to last. I have to be patient because everything will be fine”.

This lasted two years before the urologist finally admitted :
“I tried everything. I don’t really see what else I could do now.”

I had to undergo a couple of exams before the diagnosis was pronounced. After passing an MRI scan and having a little camera inserted in my bladder, I was diagnosed with interstitial cystitis (IC).

At the time, I had had only a vague idea of what IC was. No one told me I wouldn’t get better, which left me to wonder if I would.

Episode 03: We all share the same story

I decided to confront the diagnosis. I chatted online with other people, men and women, who had been living with this disease, some for over 20 years. In my extended circle, I discovered that friends and colleagues of relatives had suffered the same way, in silence, for many years.

As I saw new patients coming forward and ask for help, I always read the same story. “Can we cure interstitial cystitis? How? When? Please, I need help. I can’t take any more of this”, some wrote out of despair.

Living with interstitial cystitis means living with constant pain, day and night, in the pelvic floor area and/or in the bladder. It’s running to the bathroom up to 60 times per day. Some end up wearing diapers, with little to no continence left.

Most people who suffer from this disease report being isolated, experiencing severe repercussions on their social, family, and professional lives. For others, everyday activities become so unlivable that they completely withdraw from their daily life. They no longer dare to leave their homes, go to the pharmacy, the supermarket, or the cinema. Sounds a lot like quarantine, except over a lifetime.

The impacts on mental health are frightening: A study reported that 11% of IC patients experienced suicidal ideas during the past two weeks before the survey. We have a higher risk of anxiety and depression than the general population.

Episode 04: Grieving and acceptance

At 23, I buried all hope to find a cure. Looking back, I should have done it sooner. Interstitial cystitis is an invisible handicap. However, I only realized I was going to live with a disability after several years. For me, this aspect of the disease is the most difficult: living in doubt, not understanding what is happening, and if I will ever get better.

As with any disability, one has to mourn the “before-the-illness-self”, to open the door to the “after-self”. I can’t describe how I felt going through that realization in complete darkness over the course of three depressing years.

Perhaps it would be easier to do if our disease was better understood.

IC is, to this day, a disease whose cause remains unknown. Some suggested It could be triggered by a bladder trauma or overdistention, a pelvic floor muscle dysfunction, an autoimmune disorder, bacterial infections, a hypersensitivity or inflammation of pelvic nerves, and finally, a spinal cord trauma.

In the 1980s, it was still considered to be a psychosomatic disorder. This hypothesis was rejected almost 40 years ago, but the stigma still hurts women, as they represent 9 out of 10 patients. It is a relic of our medical history to believe that women who complain of belly pain are just being hysterical.

In the 2000s, with the limitations of this disease and the diagnostic criteria not being well defined, a team of researchers came with a new denomination to include all patients “Painful bladder syndrome”. Studies are conducted to fit patients into five different subtypes and better understand the mechanisms that lead to this condition.

To this day, there is not yet a terminology that is universally accepted. Treatments exist to relieve symptoms, but they have moderate success, as it’s difficult, if not impossible, to treat a condition that nobody understands how it works.

I ended up accepting the diagnosis. I have turned the page of “my old self”. This disease has messed up my studies, my professional aspirations, and my relationships. Like thousands of men and women, I discreetly started a new life, carrying in silence a condition that no one can see.

French writer, jurist, youth worker.

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