Interstitial Cystitis: The Painful Pelvic Disorder Your Gyno Isn’t Telling You About

I was newly engaged and living with my then-fiancé, when I was diagnosed with Interstitial Cystitis (IC), also known as painful bladder syndrome, a condition that causes pelvic pain, pressure or discomfort in the bladder or pelvic region. I was 27-years-old and dealing with pains and a constant urge to urinate. Imagine feeling like you have a UTI and menstrual cramps every single day for a year, even the day of your engagement. That was my life and what I thought would be the end of my happiness. Worst part was, it took months before I found a doctor who even believed my symptoms were real.

According to the IC Network, an estimated 3.2 to 7.9 million women and 1 to 4 million men in the U.S. are affected with IC. And yet it often goes misdiagnosed. As a result of the overlapping symptoms, women are normally told they have a UTI, a yeast infection or incontinence and men are many times incorrectly diagnosed with chronic prostatitis. I can’t even tell you how many gynecologists and urologists I had to see before I was properly diagnosed. One doctor even tried convincing me that the symptoms were all in my head.

“So many misdiagnoses are made because these symptoms mimic symptoms of many other common disorders. They mimic them because inflammation without infection is so common in regards to chronic pelvic and sexual pain,” says Dr. Robert Echenberg, the founder of the Echenberg Institute of Pelvic and Sexual Pain who has been studying and researching IC for the past 20 years. He goes on to explain that women with IC – especially of reproductive age – are constantly accused of having a UTI, a yeast infection, urinary stones, issues with their ovaries, vaginitis, and some are even told it’s mental. “But IC is very real and should be easy to diagnose. You diagnose based on symptoms and a thorough physical examination,” he adds. “If the patient has already been tested for all other conditions, they have negative urine cultures, they have not reacted to normal medications, they don’t have other issues like an overactive bladder, and their urethra and bladder are significantly tender and painful upon touch, there’s a good chance they have IC.”  

Even in 2016, not enough doctors have experience diagnosing IC. “In this day and age what I see is probably 15 to 20 million women of reproductive age and one of the most common reasons they come in are for pelvic pain, sexual pain and genital pain,” says Dr. Echenberg. “It’s a crime that current urologists are not able to make this diagnosis more easily and certainly not tell people that it’s in their heads.”

What is actually happening to your body when you have IC?  The nerves that go through the urethra, the base of the bladder, the pelvic area, and even the vagina in some cases, are flaring up as a result of inflammation that’s building up in those areas. What causes the inflammation is what doctors are still trying to find out, but Echenberg along with other researchers have theories. A large majority of patients diagnosed with IC usually have a hereditary history of IC, experienced a physical injury either due to sports or an accident that affected the nerves in the pelvic area, went through labor, or had surgery in the pelvic area at some point.

In my case, I developed IC almost immediately after having my appendix removed. My appendicitis was caught so late it even led to an abscess in my pelvic area that had to be drained through surgery. The very next day I told my doctors I felt like I had a UTI, but when my cultures came back negative, I was told it was probably some aftermath sensation from the catheter that was placed in during my surgery. I spent the next few months with chronic pelvic pain and a constant urge to urinate until I finally found a doctor who properly diagnosed me.

The most devastating part of IC, in my opinion anyway, is the sexual pain part. I didn’t experience it as badly as many patients do, but I did feel extreme discomfort almost every time I had sex. That put me into a deep depression that continued until my treatments finally started to work.

“All of the nerves, muscles, and ligaments that surround the bladder, urethra, vaginal opening and perirectal opening, have common nerves that connect to each other and come from the same basic area from the sacral region of the spinal cord,” says Dr. Echenberg. This is why sex can be so painful for many women with IC.  It is what doctors refer to as cross-talk, meaning that each of the organ systems and all of the structures in the region of the body, coming from the same areas where the nerves are connected, actually kind of talk to each other chemically. “This is why they have found so many IC patients to also have irritable bowel or vulvodynia, a chronic pain condition in the vulva area.” He says. “It’s all connected.”

I was fortunate; within 3-5 months of treatment I began to experience drastic improvements. I went from pain and discomfort every day to a few times a week, then a few times a month and eventually every few months. I have been in remission for almost three years now. Not only do I not experience that nagging discomfort, I have been able to have sex without experiencing any kind of pain.

The treatments vary but dietary changes are one of the ways to combat IC. These days, there’s an app that was created by the IC Network called the ICN Food List, that helps patients modify their diets based on their symptoms. It tells you which foods are “IC friendly”( low-acidic foods) along with the ones that aren’t. I was told by my doctor to get on the IC diet so I did. I also started eating a completely organic diet. I gave up most beverages for months, only drinking water and herbal teas. I really got into yoga and meditating. I made my mental, emotional, and spiritual health my main priorities.

There are a number of other treatment options available out there for IC patients. In addition to making dietary changes, my doctor put me on a tricyclic antidepressant called Amitriptyline. When taken in its lowest dose, Amitriptyline helps calm nerves, which in time leads to less urinating urges and less pelvic pain.

There is also Elmiron (the only FDA-approved drug created specifically for IC) and antihistamines like Hydroxyzine that are prescribed to reduce nerve pain. Newer treatment options like Botox are used to calm the nerves in the bladder and urethra, which research shows has helped a small percentage of people. There are physical therapists who can help reduce pelvic pain and improve pelvic floor dysfunction.

When none of those treatments work, there are bladder installations.

“These installations are treatments for patients that have really significant urgency and frequency,” says Dr. Echenberg. “The doctor installs a small amount of medication into the bladder using a tiny, pediatric-sized, catheter. Some patients come on a weekly basis for six months and then less frequently after that, but in many cases we show them how to do this treatment themselves at home.”

IC is a very individual situation; what might trigger one patient can be perfectly fine for another. I took one Amitriptyline every single night for about six months. My doctor slowly took me off it once my symptoms lessened. These days, the only thing I take to maintain my remission status are probiotics that specifically target the urinary tract.

“When it comes to IC, the good news is that it’s not dangerous and it’s not fatal. It won’t lead to other conditions like cancer but it can drastically affect your quality of life,” says Dr. Echenberg. “Our goal as doctors is not only to cure you but to get you to a state where you can live a happy and healthy life again.”

I am proof that there is life after IC. It doesn’t have to take over your life and it doesn’t even have to be something you live with for the rest of your life. We just need more doctors who understand it, so IC patients can get the treatment they need as soon as possible without being told “it’s all in their head.”