To the Person Who Didn't Know Their Pain Could Be Caused by Interstitial Cystitis

Dear sufferer of a nonstop urinary tract infection (UTI),

You may have interstitial cystitis (IC). In fact, my guess is if you continuously have had UTI-like symptoms without resolve, you probably do have IC. What is IC?

This is a disease that is characterized by pain in the bladder or lining of the bladder.

I have been fighting this disease 21 years and have had a diagnosis for 21 years. My diagnosis was fast; it only took about four months from onset.

That is actually amazing because many women, men and children suffer this disease for years before knowing what they have.

Treatment is still dodgy at best though, even with a diagnosis.

I have been treated like a hypochondriac, or like an addict when mentioning the nonstop progressive pain.

I was told that it is a mental health issue and that pain can only be resolved through therapy. IC is a psychosomatic response to stress, they told me. Many doctors simply threw up their hands, so to speak, because they couldn’t offer a “cure.”

Folks, this disease is real. It affects your bladder. You may have pain in your legs, buttocks, lower back, abdomen, kidneys and even down your arms. You may feel sharp stabbing cramps, the burning, the never-ending feeling of pressure to pee. Some cases are mild, you only have a bit of burning. Or you may just have pain. Or just have frequency.

You may unfortunately experience extremely painful sex or have extreme pain after sex because it causes a “bladder flare.” Men can also be affected this way.

It also affects your life beyond the bathroom. You may repeatedly return to the bathroom. Over and over and over. Employers can get angry. Spouses and children might be annoyed that you miss so much.

You might find yourself avoiding events to avoid the angry questions or whispers and stares. You may be unable to work for long time periods. You may be unable to work at all.

Sadly there is not a cure, yet. A few studies have been conducted, but at best it is permanent viral or bacterial damage, or caused by a central nervous system dysfunction.

Last, I want to say: Find people you can confide in. Find people who will love you. Find people who understand that you do not feel well, but you are doing the best you can. Please find a support group. We are all in pain, but we know it’s real! Come read my blog and please share your story in the comments.

Do not be afraid to stop seeing a doctor who will not listen. Press them to treat you with respect.

The Mighty is asking the following: Write a love letter to another person with your disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Interstitial Cystitis

Why I'm Sharing My Interstitial Cystitis Story

As a young adult battling interstitial cystitis (IC) and never having health issues up until now, this disease has caused me to lose a sense of normalcy in my life. I was diagnosed last April when I was studying abroad in Ecuador. I began having excruciating lower abdominal pain, which doctors there attributed to appendicitis. [...]

When My Gynecologist Gave Up on Finding My Interstitial Cystitis Diagnosis

My name is Christy Keyes and I’m 39 years old. Interstitial cystitis (IC) showed up in my life at the age of 33 when I began experiencing symptoms of a bladder infection, but my culture results kept coming back negative. And this pain that kept coming back was unbearable. More importantly, the emotional trauma of no [...]

What My Invisible Disease Gave Me Eyes to See

We looked like any other couple. My husband and I. There we were, sitting at a restaurant this past Valentine’s Day, just like millions of other couples. But we weren’t looking deeply into each other’s eyes. Or whispering sweet nothings across the table. I was forcing myself to be there at all.  My reluctance had [...]

Watch Robert Downey Jr.’s Best Work Yet

Alex is a 7-year-old comic book fan who was born without part of his right arm. Now, he’s a superhero. In the adorable video below, Alex walks into a hotel room and is presented with his own bionic arm by none other than the actor who plays Iron Man in the films, Robert Downey Jr. [...]