What Causes Interstitial Cystitis? How 10 Women Got To The Root Of Their Bladder Pain
Interstitial cystitis (IC), also known as bladder pain syndrome, is a devastating diagnosis to receive. Between the burning bladder pain, constant bathroom trips, and sleeplessness due to nighttime urination, the disease itself is hell. What makes it worse is being told that there is no known cause and therefore no cure. However, many people with IC have been able to see partial or total reduction of symptoms by getting to the root cause of their illness.
"I have had patients who were suffering with IC and were able to resolve things after various interventions," functional medicine doctor Soyona Rafatjah, MD, owner of the primary care and integrative medicine private practice, PrimeHealth, tells Bustle. "There is currently no consensus on its origin, and studies have shown that the treatments that work for individuals are highly variable. Therefore, it's impossible to come up with one treatment that works for all IC patients. It's most important to consider all the possible inflammatory causes in an individual's history in order to come up with the best treatment approach."
So, it should be noted that the below stories do not apply to everyone; they're simply what worked for some women and what some doctors have observed. But everyone's root cause is different, and some are not able to identify a root cause at all. When people remain sick with IC, it's not because they haven't worked hard enough to find their root cause; that may just not be possible in their case.
However, it's also helpful for people with IC to learn about the potential root causes so that they can investigate them if they choose, rather than lose hope in ever getting better. For many patients, remission is possible.
Here's how some women were able to put their IC into remission or decrease their symptoms dramatically by discovering what was underlying it.
1. Hannah, 23: Pelvic Floor Dysfunction
Hannah spent years dealing with recurrent urinary tract infections, yeast infections, and bacterial vaginosis. Her pelvic floor muscles would tighten from them pain, even after the infections cleared up. After doctors were unable to alleviate her symptoms, she found her way to a pelvic floor physical therapist. After two years of physical therapy, she describes herself as "90 percent better." To educate other women about pelvic floor dysfunction, she started the Women's Pelvic Health Podcast.
Hannah's case resembles many cases that Stephanie Prendergast, CEO and cofounder of the Pelvic Health and Rehabilitation Center, sees. "A common situation for IC patients is that they may experience a few actual urinary tract infections," she tells Bustle. "A UTI is a painful visceral experience which causes pelvic floor muscle tightening in response to the pain. Sometimes the muscles do not relax after the UTI is treated with antibiotics, especially if the person has had a number of infections in a short period of time."
It's not just UTIs that can cause pelvic floor dysfunction. It can also stem from improper exercise of the pelvic floor muscles, holding your bladder too long because you don't have time to go to the bathroom, and GI issues like constipation. The majority of IC patients have pelvic floor dysfunction, says Prendergast. Therefore, she recommends that people with IC get evaluated by a pelvic floor physical therapist.
2. Tabitha, 24: Endometriosis
Tabitha used to need four to five Uribel pills per day to alleviate her IC pain. She knew she also had endometriosis, a condition where tissue similar to the uterine tissue grows outside the uterus, causing severe period pain and painful sex. But it wasn't clear if or how her two conditions were connected. Then, she got a laparoscopy, where endometrial tissue is identified and removed, and a hysteroscopy D&C to remove her uterine polyps. Ever since then, she's only needed one Uribel a day. "My specialist told me the endo basically suffocated my urethra, which caused major friction," Tabitha, who founded the magazine DO YOU ENDO, tells Bustle.
"If there is inflammation anywhere in the pelvis due to a case of endometriosis, it's likely that the inflammatory cytokines (molecules that signal inflammatory cascades) will be close enough in vicinity to affect the bladder, and visa versa," Dr. Rafatjah says.
In some cases, endometriosis can actually enter the bladder. "Endometriosis is not limited to the uterus and, although rare, can infiltrate the lining of the bladder," functional medicine doctor Raphael Kellman, MD, tells Bustle. "This can worsen the symptoms of IC. Endometriosis should be ruled out in cases of IC and vice versa because many times they are linked."
In fact, endometriosis and IC are sometimes called "evil twins," according to the Interstitial Cystitis Association. If you have symptoms of endometriosis as well as IC, you should get evaluated by an OB/GYN or urogynecologist to see if they could be related.
3. Megan, 45: Leaky Gut Syndrome
Megan had the "worst case of IC" that the nurse who did her cystoscopy had ever seen. She went on Elmiron, a medication aimed at rebuilding the bladder lining, which helped a bit but drained her wallet. Then, she began seeing naturopath Jared Zeff, ND, who performed a food intolerance test using the Dr. Carroll Food Intolerance Evaluation Method. Zeff found that Megan had a fruit intolerance, and Megan's zonulin levels suggested she had a leaky gut, which may have allowed the fruit particles to enter her bloodstream and irritate her bladder.
After Megan stopped eating fruit and went on the GAPS diet to heal her gut, her IC symptoms completely went away. The explanation seemed too simple to be true, but whenever she ate fruit, it would start to come back. "I had success putting my IC into remission because I addressed my leaky gut through a wellness diet designed to regenerate the epithelial cells that line the gut," she tells Bustle. "Secondly, I pulled out a whole food group that my body wasn't able to digest well. I continue to treat my gut with gentleness, and my diet is one of great intentionality."
About half of Zeff's IC patients have difficulty digesting fruit. "Food which does not digest well in the intestines will ferment and putrify through inappropriate bacterial activity," he tells Bustle. "These processes will generate toxins. Many of these toxins are pro-inflammatory. They will be absorbed into the bloodstream and circulate around and irritate or cause inflammation of susceptible tissues, driving sterile but inflammatory processes, such as interstitial cystitis. This process is driven, in part, by foods that are not well digested by a particular body. By removing the intolerant foods and improving the digestion, the toxin load decreases and then the inflammation decreases."
4. Laura, 51: Candida
Candida is the fungus responsible for yeast infections and oral thrush. It can also grow in other parts of the body, including the bladder. Laura learned this after a holistic doctor diagnosed her with candida overgrowth. To treat it, she went on a paleo diet and took Saccharomyces Boulardii, Candida Stat, and UT Synergy.
Many people develop candida overgrowth due to overuse of antibiotics to treat UTIs or other infections, Dr. Rafatjah says. "Candida causes inflammation," she explains. Candida can also lead to leaky gut, which in turn can contribute to IC, Kellman says.
5. Dana, 53: Lyme Disease
About a year and a half after being diagnosed with IC, while also suffering from a number of autoimmune conditions, Dana cut herself and got infected. After taking antibiotics, her seemingly unrelated symptoms, including the bladder ones, were alleviated. Her doctor recognized this as a sign of Lyme disease, and once she got treatment for Lyme, the IC resolved as well.
"Because Lyme can affect any tissue in the body, the bladder is sometimes where it lands," Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, tells Bustle. "It can also be a result of it affecting the nerves that innervate the bladder."
The connection between Lyme and IC is so significant, the Interstitial Cystitis Network states that if you have IC, "it is certainly reasonable to request Lyme disease testing, especially if you have suffered a tick bite and/or live in an area with high Lyme disease."
6. Denise, 45: Food Intolerances
Denise spent years struggling with IC until she remembered the soy intolerance she'd had since she was little. While researching soy, she found that though she'd cut soy sauce and tofu out of her diet, soy was in a lot of processed foods as well. "When I cut it out, my bladder was 100 percent improved," she says. "Even sex was no longer painful." Her 21-year-old daughter Riley, who also has IC, has experienced less bladder pain since she stopped eating soy, too.
Certain foods are known to irritate the bladder, which is why the Interstitial Cystitis Association offers dietary guidelines to curb symptoms.
However, on top of some foods and drinks being bladder irritants, individual food intolerances can also contribute to IC. "If someone is eating foods that cause an inflammatory reaction in their body, then it's possible that IC could be caused," Dr. Rafatjah says. "Some foods that commonly cause inflammation in people are wheat (gluten), cow's milk (casein), and refined sugar. Alcohol can also be associated with bladder inflammation and IC."
7. Kimberly, 40: Chemical Sensitivities
When Kimberly's doctors told her she'd have to deal with IC forever, she refused to take that as an answer. Through her own research, she read that chemicals like nitrates, sulfites, food dyes, cigarette smoke, paints, and lacquers could contribute to bladder issues. She went on an elimination diet and avoided the chemicals that bothered her as much as possible. Now, she's symptom-free except for the occasional flare when she's exposed to these chemicals.
"If [someone is] eating, drinking, or exposed to toxic chemicals that cause inflammation in their body, then this can certainly cause IC," Dr. Rafatjah says. "You can think of it as an allergic reaction. While some people are allergic to pollen and as a response become inflamed in their nasal passages and eyes, these people are mounting an allergic-type response to various other things (like nitrates, sulfates, food dyes, cigarette smoke, and paints/lacquers), which cause them to become inflamed in their bladder."
8. Alexis, 24: Autoimmune Disease
In addition to IC, Alexis has gastroparesis and Sjogren's, an autoimmune disorder where the immune system attacks the glands that produce saliva and tears. Through her own research, she learned that Sjogren's could cause both gastroparesis and IC.
"The immune system should normally be involved in defending ourselves from invaders, but when not functioning properly, the immune system can actually attack our own bodies," Dr. Rafatjah says. "If the immune system is causing an inflammatory reaction in the bladder, then symptoms of IC would be inevitable."
There are several reports of Sjogren's patients suffering from IC in scientific literature. People with IC are also 30 times as likely as the rest of the population to have systemic lupus, another autoimmune disorder, according to the Interstitial Cystitis Association. These patients may see reduction of IC symptoms after treating their autoimmune conditions.
9. Lauren, 35: Chronic UTI
When Lauren first got a UTI in August 2016, she kept the symptoms at bay by taking antibiotics for six weeks, but they didn't fully clear up. Yet her UTI tests started coming back negative, so her doctor stopped prescribing antibiotics and referred her for a number of painful, invasive tests. It got so bad she had to stop working. She was eventually diagnosed with IC and told she'd have to live with it.
She didn't accept this, so she did her own research and learned about James Malone-Lee, Emeritus professor of Medicine at University College London, who had been treating chronic UTIs. After checking her urine for white blood cells, he determined that she had a chronic UTI and prescribed her a long course of high-dose antibiotics. She was 80-90 percent better after six months and now lives symptom-free.
“Failures in UTI testing are more common than most people realize," Chronic UTI Australia spokesperson Andrea Sherwin tells Bustle. "Unfortunately, a common experience for people with UTI symptoms, but whose testing comes back negative, is for their doctor to infer that they are stressed or anxious, or worse, that the problem is ‘in their head.’ Based upon these negative test results, people with ongoing UTI symptoms often undergo painful and invasive investigative procedures and are prescribed medications to help manage symptoms but which fail to actually treat the cause."
Research has suggested that standard UTI tests miss many infections, which is often what allows UTIs to become chronic. There are currently some alternative tests available, however, such as PCR tests, Next-Generation Sequencing, and Broth Culture.
10. Caitlin, 28: Gut Dysbiosis
Gut dysbiosis is a state of imbalance in your microbiome, which usually means you have too many harmful bacteria and not enough beneficial ones. This can lead to bacterial overgrowth in the bladder, which may or may not turn into a full-blown infection but can cause IC symptoms regardless.
Caitlin learned she had dysbiosis via a stool test and got to work healing her gut via dietary changes, antimicrobial herbs and supplements, nervous system retraining, and kambo. She's now free from significant symptoms except for occasional flares.
"The majority of our microbes live within our gut — about six pounds worth," Dr. Rafatjah says. "If someone has been taking antibiotics frequently, or sometimes daily, then I can assume that they have dysbiosis (imbalanced microbiome) and most likely fungal overgrowth, which will both perpetuate this inflammatory cycle. I would first try to understand why this person's microbiome is imbalanced, and then start to treat that, with the hopes that the IC would eventually resolve."
As these stories show, it can take a lot of detective work to get to the bottom of IC — or any chronic illness, for that matter. But for many, improvement is possible. So, just because you haven't found the answer yet doesn't mean there isn't hope for you. There always is.