A Deeper Look At Interstitial Cystitis Symptoms and Causes

In my telehealth functional medicine clinic, I have seen interstitial cystitis to be one of the most frustrating conditions to navigate. Between the burning pain, feeling like you always need to pee, and constantly getting misdiagnosed with UTIs, living with this condition can take its toll on your quality of life. 

That’s why my goal is to bring as much awareness around this condition as possible. While conventional medicine often focuses on managing the discomfort of interstitial cystitis, functional medicine asks what may be driving the inflammation, immune dysfunction, and irritation behind these persistent bladder symptoms so you can begin to reclaim your health.

What Is Interstitial Cystitis? 

Interstitial cystitis, also known as bladder pain syndrome or painful bladder syndrome (IC/BPS), is a chronic condition that happens when the protective lining of the bladder, called the urothelium, becomes damaged or compromised, allowing irritants in the urine to penetrate the bladder wall, leading to inflammation and various uncomfortable symptoms. It is more common in women than men with anywhere between 3 million and 8 million women diagnosed with this condition across America. (1)

What are the symptoms of interstitial cystitis?

Symptoms of interstitial cystitis closely mimic the symptoms of urinary tract infections:

• Abdominal pain
• Bladder pain
• Bladder pressure
• Frequent urination (even throughout the night)
• Pain during sex
• Perineum pain (in men)
• Low urine volume

Symptoms usually begin before the age of 30, but a diagnosis is not typically given until about age 40. (2)

What causes interstitial cystitis?

Although the symptoms of interstitial cystitis and UTIs are similar, the biggest difference is what causes these two conditions. Unlike a UTI, interstitial cystitis is not caused by a bacterial infection. That’s why education around interstitial cystitis is so important, as many women go for years mistaking their symptoms for chronic UTIs, giving way to unnecessary antibiotic use. Instead of eradicating the bacterial infection (since it doesn’t exist) many women with interstitial cystitis are left with dysbiosis and other gut health problems as a result of antibiotics wiping out the good bacteria.

As of right now, there is no single known cause of interstitial cystitis. It is not currently considered as an autoimmune disease and is instead classified as a chronic inflammatory condition that can be triggered by various factors: (3)

• Autoimmune disease
• Allergies
• Bladder lining issues
• Bladder tissue defects
• Vascular disease
• Mast cell abnormalities
• Excessive protein levels
• Previous bladder infections

You also have a greater chance of getting interstitial cystitis if you have a family member with this condition. (4)

LISTEN: Estrogen Foods, Interstitial Cystitis, Histamines + Mammogram Myths | Ask Me Anything

Interstitial cystitis and autoimmunity

In functional medicine, we understand that autoimmune conditions are really just the end stage of the larger autoimmune-inflammation spectrum. To be diagnosed with an autoimmune condition in the standard model of care, your body has to have already destroyed the majority of tissue (up to 90% in the case of Addison’s disease). 

However, we also know that you don’t come down with a chronic disease overnight. You are always trending toward health or trending toward disease. Ultimately, there are three stages of the autoimmune-inflammation spectrum:

• Silent Autoimmunity: There are positive antibody labs but no noticeable symptoms. Your doctor will likely tell you that you are probably fine, or to come back next year and re-test.
• Autoimmune Reactivity: There are positive antibody labs and symptoms, but still not enough to warrant a formal diagnosis.
• Autoimmune Disease: There’s enough body destruction to be diagnosed.

That’s why you can experience symptoms of autoimmune disease without being diagnosed. But in the case of interstitial cystitis, things aren’t even as straightforward as this spectrum. While there are certainly autoimmune components to interstitial cystitis, it doesn’t operate quite like other autoimmune conditions do in a couple areas:

• Antibody response: Unlike most other autoimmune conditions, tests for interstitial cystitis don’t show any antibody activity on the bladder directly, putting people outside of even the “silent autoimmunity” category of the autoimmune-inflammation spectrum. But with that said, those with interstitial cystitis tend to have higher levels of inflammatory antinuclear antibodies so there is debate on whether or not you’d still fall into the category of silent autoimmunity or not.
• Overlapping conditions: People with interstitial cystitis are often diagnosed with other autoimmune diseases or inflammatory conditions like endometriosis and fibromyalgia. Once you are diagnosed with one autoimmune condition you are at a higher risk for developing more — a condition known as polyautoimmunity. More research would need to be done to see whether or not interstitial cystitis developed before or after the coexisting autoimmune disease in those with both conditions.

In my book, The Inflammation Spectrum, I talk more about how to identify where you are on this autoimmune-inflammation spectrum.

How do you diagnose interstitial cystitis?

Since there is no definitive test for interstitial cystitis and is likely why many people wait almost a decade between symptom development and diagnoses. In conventional medicine, your doctor may use the following tools to help conclude a diagnosis.

Medical history

By evaluating your current symptoms, medications, supplements, diet, and family history of interstitial cystitis and other conditions, your doctor can make a better x as to whether or not you are at a higher risk for this condition.

Urinalysis 

If you have typical symptoms of interstitial cystitis and your urine doesn’t show signs of blood or infection, your doctor will be able to rule out chronic UTIs as the reason for your symptoms in favor of interstitial cystitis.

Urodynamic testing

A urodynamic test involves filling your bladder with water via a catheter before emptying it. This test helps your doctor measure your bladder pressure and examine your response since those with interstitial cystitis often have small bladder capacity and experience pain when the bladder fills. 

Cystoscopy

Your doctor may also use a specialized camera that allows them to look inside your bladder or perform a biopsy so they can rule out any other issues, such as bladder cancer, that can cause symptoms of interstitial cystitis. 

Potassium sensitivity test

Since a damaged bladder lining can be a characteristic of interstitial cystitis, your doctor may run a potassium sensitivity test that fills your bladder via the urethra with a potassium solution that elicits pain when the bladder lining is damaged.

Natural remedies for interstitial cystitis

The conventional treatment for interstitial cystitis includes antidepressants like amitriptyline, medications like antihistamines and heparin, and therapies like DMSO or Botox that have their own set of side effects. Sometimes these are prescribed alongside more natural remedies like physical therapy, but in functional medicine we want to lean into treatments that have the least amount of side effects as much as possible. 

1. Do an elimination diet

People with interstitial cystitis attribute their symptoms to certain triggers, particularly specific foods. By removing foods that are most likely to cause an inflammatory reaction for an extended period of time, an elimination is a great tool to not only uncover what foods trigger your symptoms, but also calm any underlying inflammation that may be associated with your condition.

READ MORE: How To Do An Elimination Diet: Meal Plans, Benefits, and Tips

2. Seek out physical therapy

Physical therapists have so many tools at their disposal far beyond various stretches and exercises, many of which have been linked to improvements in interstitial cystitis symptoms. (5)

• Biofeedback: By placing electrodes on your body (typically near the perineum or around the anus), it allows your physical therapist to measure how tense or relaxed your pelvic floor muscles are to help you get a sense of when and how much to relax.
• Electrical stimulation: This therapy, often referred to as electrical nerve stimulation, uses electrodes inserted through your vagina or rectum to help desensitize nerves and encourage muscle relaxation. 
• Ultrasound: Helps improve overall chronic pain.
• Cold laser: Low-intensity laser light has been shown to help improve pain associated with interstitial cystitis.

3. Try bladder training

Some doctors encourage patients to avoid the first urge to urinate to see if it passes without becoming painful, waiting to urinate until really necessary. This can help the bladder “retrain” itself to only have urges when the bladder is truly full. In one study, 71% of participants experienced a 50% reduction in their urge to urinate! (6) We recommend talking with your doctor before trying this to determine if it is the best course of action for your specific case.

4. Seek out a functional medicine practitioner

Even though interstitial cystitis is not technically considered an autoimmune condition, since it has a lot of underlying autoimmune components to it, particularly inflammation, working with a functional medicine practitioner who has experience in both of those areas can be extremely beneficial. In my telehealth functional medicine clinic, we look at everything from the food you eat to your stress levels to put together a personalized, comprehensive plan of lifestyle changes to address interstitial cystitis.

As one of the first functional medicine telehealth clinics in the world, we provide webcam health consultations for people around the globe. 

Photo: Unsplash.com

Sources

• Interstitial Cystitis Association. (n.d.). Who gets IC? https://www.ichelp.org/understanding-ic/learn-about-ic/who-gets-ic/
• Parsons, C. L. (2015). How does interstitial cystitis begin? Translational Andrology and Urology, 4(6), 605–610. https://doi.org/10.3978/j.issn.2223-4683.2015.11.02
• Karamali, M., Shafabakhsh, R., Ghanbari, Z., Eftekhar, T., & Asemi, Z. (2019). Molecular pathogenesis of interstitial cystitis/bladder pain syndrome based on gene expression. Journal of cellular physiology, 234(8), 12301–12308. https://doi.org/10.1002/jcp.28009
• Warren, J. W., Jackson, T. L., Langenberg, P., Meyers, D. J., & Xu, J. (2004). Prevalence of interstitial cystitis in first-degree relatives of patients with interstitial cystitis. Urology, 63(1), 17–21. https://doi.org/10.1016/j.urology.2003.08.027
• Interstitial Cystitis Association. (n.d.). Physical therapy. https://www.ichelp.org/understanding-ic/complimentary-treatments/physical-therapy/
• Parsons, C. L., & Koprowski, P. F.. (1991). Interstitial cystitis: Successful management by increasing urinary voiding intervals. Urology, 37(3), 207–212. https://doi.org/10.1016/0090-4295(91)80286-G