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% of whom are women.
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 at 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.
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 an urologist visit and a backwards diagnosis—starting with what the condition isn’t.
3. Diagnosis Procedures Aren’t Easy
After ruling out conditions such as endometriosis, kidney stones, or STDs, doctors look to cystoscopy with hydrodistension. 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 mucus layer that lines and protects the bladder.
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.
- Interstitial Cystitis Association
- American Urogynecologic Society
- National Institute of Diabetes and Digestive and Kidney Diseases
You don’t have to deal with this alone!