Interstitial Cystitis Is Like a UTI & 90 Percent of Sufferers Are Women

Feb 9, 2017 at 1:00 p.m. ET
Image: Ma-no/Getty Images

What if I told you that you could have all the symptoms of a UTI (or other) bladder infection without actually having one?

Sounds pretty terrible — but this crummy, chronic situation is actually a possibility. And it’s one that affects an estimated 700,000 people, 90 percent of whom are women.

More: I Have a Common Bladder Infection No One Talks About & It's Ruining My Life

According to Harvard Health, this chronic bladder inflammation sends women to the bathroom up to 60 times a day with that dreaded burning sensation that commonly accompanies a UTI. That’s a lot of trips to the bathroom — and even more discomfort, pain and ability to disrupt daily activities.

So what exactly is this horrendous condition sent to traumatize women beyond the traditional horrors of PMS and cramps?

It’s called interstitial cystitis and it can be “so excruciating and difficult to manage that only about half of women with the disorder continue working full time.” Worst of all, there is no real cure for the condition — only treatments to make it more manageable.

Tired of battling the symptoms of an infection without relief? You may be one of those 700,000. Here are a few important facts to consider about IC.

1. Symptoms aren’t one-size-fits-all

Unfortunately, symptoms vary from woman to woman, but commonly involve pain during intercourse and urination, bladder pressure, and pelvic pain. In fact, the condition is also commonly known as “painful bladder syndrome.” Frequent urination is also a main symptom once infection has been ruled out.

More: New Cure for UTIs Will Have Many People Happy Indeed

2. Diagnoses are difficult

Because symptoms mimic those of an infection, many women are simply sent home with medication to combat a UTI. However, a distinguishing factor does exist: Bacterial cultures of urine are negative. After rounds and rounds of antibiotics with no end in sight, it’s time for a second opinion. This typically occurs in the form of a urologist visit and a backward diagnosis — starting with what the condition isn’t.

3. Diagnosis procedures aren’t easy

After ruling out conditions such as endometriosis, kidney stones or STIs, doctors look to cystoscopy with hydrodistention. This procedure involves inserting a tiny tube into the urethra to get a look inside a person’s bladder. To help with that, the doctor stretches the bladder with a fluid or gas. Luckily, this is all done under anesthesia.

4. It’s hard to nail down what it looks like

Harvard Health says signs of a positive IC diagnosis are “red pinpoint spots of blood (glomerulations) covering much of the bladder wall surface. Sometimes there are scars or lesions called Hunner’s ulcers, accompanied by low bladder capacity due to tissue stiffening (fibrosis).” As far as a cause, doctors all have differing hypotheses, but there is some agreement that it stems from abnormality in the mucus layer that lines and protects the bladder.

More: There's a UTI Season, So Better Stock Up on Cranberry Juice Now

5. There’s no cure, but there’s treatment

As mentioned, there is no cure for IC, but there are several ways to put up a fight so you can continue with your life. There’s currently one medication approved for treatment called Elmiron. It helps rebuild and sustain the bladder’s lining. Other treatment options include dietary changes to eliminate foods associated with flare-ups, antihistamines and bladder instillations.

There’s no denying that any kind of chronic pain is, well, a pain. But it’s especially annoying when the pain is also paired with urinary issues. Doctors know very little about IC, but they’re building up the knowledge base all the time.

Aside from Googling support forums and links to clinical trials, check out these three organizations who are making strides toward a treatment. If you’ve got IC, make sure to leave any helpful discoveries in the comment section for other women looking for answers. When you’re peeing 60 times a day, almost anything is worth a try.

You don’t have to deal with this alone!

By Kaysie Garza

Originally published on HelloFlo.