Interstitial Cystitis (IC): Symptoms, Diagnosis, Causes & Treatment

Interstitial cystitis (IC) is a chronic condition that causes bladder pain, bladder pressure, pelvic pain, and urinary urgency.

Although many have not heard of IC, this autoimmune disease affects up to 12 million adults in the United States alone.

Below, we talk more about IC symptoms, causes, treatments, and when to see a doctor.

What is interstitial cystitis?

Interstitial cystitis is a relatively common bladder condition that leads to chronic pain in the bladder area, as well as urinary urgency or urinary frequency.

According to the National Institute of Diabetes and Digestive and Kidney Diseases and the Interstitial Cystitis Association, interstitial cystitis is also known as:

• IC
• Painful bladder syndrome (PBS)
• Bladder pain syndrome (BPS)
• Chronic pelvic pain
• Hypersensitive bladder syndrome

There are 2 types of IC:

1. Non-ulcerative IC: About 9 out of 10 IC sufferers have non-ulcerative IC. This involves hemorrhages (glomerulations) in the bladder wall.
2. Ulcerative IC: Up to 1 out of 10 IC sufferers have ulcerative IC. This often involves Hunner’s ulcers or red, bleeding patches on the bladder wall.

Symptoms of Interstitial Cystitis

Symptoms of interstitial cystitis vary from person to person. Most people experience pressure or pain in their bladder and/or pelvis. Some IC patients experience more frequent urination or pelvic floor spasms.

The symptoms of interstitial cystitis include:

• Increased urinary urgency
• Increased urinary frequency
• Decreased bladder capacity
• Stiffening of bladder walls
• Pain or discomfort as the bladder fills
• Bleeding, ulcers, and/or sores in your bladder
• Chronic pelvic pain
• Weakened pelvic floor muscles
• Pain in your lower back
• Low-quality sleep
• Pain in your perineum (the space between the anus and scrotum or vulva)
• Pain during sexual intercourse
• For women, increased pain around periods
• For men, pain in the penis and scrotum

Pelvic exams and Pap tests may be painful for IC sufferers. If you require one of these tests, talk with your doctor. They can make the test more comfortable for you and avoid worsening symptoms of IC.

What does an IC flare feel like? An IC flare causes mild to severe pain and may feel like the sudden need to urinate or pressure that feels like you need to urinate constantly. IC flares may come on unexpectedly and abate just as quickly.

Even if it is rarely life-threatening, the unexpected nature of IC flares can greatly affect IC patients’ quality of life.

Related Conditions (Comorbidities)

Although it is unclear if these are causes, symptoms, or neither, many interstitial cystitis patients also suffer from various other medical conditions.

Conditions related to IC include:

• Irritable bowel syndrome (IBS)
• Depression, anxiety
• Chronic fatigue syndrome
• Fibromyalgia
• Vulvodynia
• Endometriosis
• Allergies

What triggers interstitial cystitis?

The medical community does not agree on exactly what triggers interstitial cystitis. However, potential causes include autoimmunity, trauma, infections, inflammation, and certain food triggers.

Causes of interstitial cystitis may include:

• Autoimmunity
• Bladder injury, trauma
• Spinal cord injury, trauma
• Injury or trauma from surgery
• Pelvic floor muscle dysfunction
• Inflammation of the pelvic nerves
• Bladder overdistension
• Bacterial infection
• Genetics

What foods aggravate interstitial cystitis?

• Citrus fruits
• Tomatoes
• Potassium-rich foods
• Chocolate
• Caffeine
• Coffee
• Soda
• Tea
• Alcohol
• Artificial sweeteners
• Spicy foods

Women are at higher risk to develop IC than men. They may be two-to-three times as likely to get IC than men.

IC Diagnosis & Conditions to Rule Out

Your urologist or other medical provider may use several different diagnostic tests to diagnose interstitial cystitis.

8 diagnostic tests for IC:

1. Physical exam
2. Urine cultures
3. Urine tests (AKA urinalysis)
4. Cystoscopy
5. Post-void urine volume, by ultrasound scanning
6. Potassium sensitivity test
7. Bladder distension
8. Biopsy

Because the exact cause of IC is still unknown, your healthcare provider will need to rule out similar conditions before they can settle on an IC diagnosis. (Note: These are not comorbidities; these are similar conditions which may better explain your symptoms.)

Conditions to rule out to diagnose IC:

• Urinary tract infection
• Bladder cancer
• Sexually transmitted diseases
• Kidney stones

Treatment of Interstitial Cystitis

If you suffer from IC, you will be glad to know that there are several potential treatment options — some of which are relatively simple, some of which are more invasive.

Treatments for interstitial cystitis may include:

1. Dietary changes
2. Lifestyle changes
3. Physical therapy  (pelvic floor therapy)
4. Cognitive-behavioral therapy (CBT)
5. Bladder instillation
6. Nerve stimulation
7. Medications
8. Nerve blocks
9. Botox injections
10. Surgery

Some of these treatments are supported by clinical trials. Other treatments are supported by anecdotal evidence more than peer-reviewed research.

1. Dietary Changes

Dietary changes (along with lifestyle changes) are the first-line IC treatment.

We already talked about what foods to avoid. But here’s a brief list of foods that may worsen your IC:

• Alcohol
• Caffeine
• Citrus
• Potassium-rich foods
• Artificial sweeteners
• Spicy foods

Does drinking water help interstitial cystitis? There is no consensus. Some IC patients find that drinking less water results in fewer trips to the bathroom. Other IC patients find that drinking more water results in less painful urination. 

Either way, don’t chug your water; sip.

You may need to go on an elimination diet to figure out if certain foods are triggering your IC flares. Whether you are allergic or intolerant, certain foods and beverages affect various people differently.

An elimination diet is an eating pattern in which you cut out all potential food allergens. If your symptoms improve, you then slowly reintroduce potential trigger foods back into your diet. 

When a reintroduced food triggers symptoms of IC, you know to avoid that food.

2. Lifestyle Changes

Lifestyle changes (along with dietary changes) are the first-line IC treatment.

Reducing stress is an important step in strengthening your immune system and your whole-person health. If your IC is caused by autoimmunity, stress relief if a must.

4 tips for reducing stress:

1. Meditation and yoga
2. Going outside
3. Writing therapy, art therapy
4. Massage

IC often leads to low-quality sleep because you’re constantly getting up to go to the bathroom. Here are some tips for better sleep:

• Turn off technology 1-2 hours before bed to reduce blue light exposure.
• Take a warm shower at night so your body temperature starts to cool just in time for bed.
• Don’t eat anything or exercise within 2 hours of bedtime.
• Limit liquids. Avoid caffeine after lunch. Stick to water within 2 hours of bedtime.

Finally, exercise. Regular exercise keeps your body healthy and your immune system strong. Be careful and pay attention to any immediate symptom changes, since some exercises may trigger an IC flare.

Click here to schedule a free over-the-phone consultation with us. Here at PrimeHealth, we empower patients to take an active part in their whole-person health. And we have successfully treated many patients suffering from interstitial cystitis, often utilizing lifestyle changes.

3. Physical Therapy

Interstitial cystitis patients will often turn to physical therapy if lifestyle changes haven’t relieved their symptoms.

Physical therapy is particularly helpful if you have pelvic floor dysfunction. The pelvic floor is a group of muscles that attaches your pelvis to surrounding body parts. The pelvic floor muscles are important to the function of your bladder, rectum, and uterus/prostate.

Trained physical therapists will do an initial assessment of their IC patient to find what he or she is comfortable with and the severity of his or her condition. Then, the physical therapist may start with external techniques before moving to the slightly more intrusive internal techniques.

Methods a physical therapist might use for IC are:

• Deep tissue massage
• Trigger point therapy
• Joint mobilization
• Skin rolling
• Nerve release
• E-stim
• Cold laser
• Ultrasound
• Biofeedback

Search for a physical therapist with extensive experience treating IC patients.

4. Behavioral Therapy

The following behavioral therapies may offer relief from IC symptoms:

• Keeping a diary
• Controlled fluid intake
• Pelvic floor muscle training
• Bladder training

Bladder training can be done by yourself or with the guidance of a healthcare professional. To practice bladder training, set a schedule for when you urinate, instead of going whenever your bladder tells you to.

Also called bladder retraining, this is most effective when IC symptoms are mild.

5. Bladder Instillation

Also called “bladder cocktails”, bladder instillations are when medications are instilled directly into the bladder, typically using a syringe or catheter.

Examples of bladder instillations:

• Dimethyl sulfoxide (the only FDA-approved bladder instillation)
• Alkalinized lidocaine with heparin
• Sodium hyaluronate
• Heparin

6. Nerve Stimulation

Electrical nerve stimulators send little electrical pulses to sacral nerves (in the lower back), which may relieve chronic pain and help with bladder function.

Also known as neuromodulators, nerve stimulation devices may be worn externally or implanted internally. Only IC patients who respond well to a test simulation are considered viable candidates for internal implants.

4 FDA-approved nerve stimulation treatments:

1. Urgent PC Neuromodulation System
2. InterStim Therapy for Urinary Control
3. Eon Mini Rechargeable IPG System
4. IF 3WAVE

7. Medications

Many conventional doctors will turn to prescription medications to treat IC symptoms, even if the adverse side effects may worsen the overall quality of life.

What relieves interstitial cystitis? These oral medications may be prescribed to relieve IC symptoms:

• Amphetamines
• Antihistamines
• Antimuscarinics
• Anti-seizure drugs (such as gabapentin)
• Leukotriene inhibitors
• Tricyclic antidepressants (such as amitriptyline)
• Urinary antacids

Pentosan polysulfate sodium (Elmiron) is the only FDA-approved oral medication to specifically treat IC.

However, Emilron may be linked to the development of eye disease, so doctors and researchers are searching for safer alternatives.

8. Botox Injections

Botulism toxin type A (Botox) may be used to treat interstitial cystitis.

Botox is not approved by the FDA to treat IC, but early studies indicate Botox is a safe and effective treatment for IC. However, botox needs to be readministered every 6-9 months for IC sufferers.

Direct needle injections are administered into the bladder to deliver botox for IC.

9. Surgery

If no other treatment improves your IC symptoms, you may need bladder surgery to help manage your IC. Because surgery is invasive, it’s used only when other treatments fail.

5 surgeries for IC:

1. Urinary diversion
2. Augmentation cystoplasty 
3. Orthotopic diversion
4. Laser surgery (less invasive; only for ulcerative IC)
5. Cystoscopy with hydrodistension (may be a treatment or diagnostic method)

The implantation of nerve stimulators can be considered surgery. Its risks are lower because patients need to respond well to test simulations first.

End-Stage IC

What is end-stage interstitial cystitis? End-stage interstitial cystitis is defined as a hard bladder that triggers intense pain and possesses very low bladder capacity. 

Many cases of end-stage interstitial cystitis involve Hunner’s ulcers.

Also known as “end-stage IC”, only about 5% of IC patients develop this severe condition.

A Functional Approach to Autoimmune Disease

Interstitial cystitis is not well understood. This is where functional medicine thrives. Functional providers use cutting-edge research and alternative medicine to treat IC. This includes alternative treatments and an emphasis on getting to the root cause of disease, rather than treating only the symptoms.

Functional practitioners may recommend acupuncture, chiropractic care, massage therapy, mindfulness techniques, or supplements.

Dietary supplements that may help with IC include:

• CBD
• Probiotics (not containing Lactobacillus strains)
• Aloe
• Omega-3 fish oil
• Calcium glycerophosphate
• Curcumin 
• Boswellia
• Antiparasitic and antifungal herbs

Consult your healthcare provider before you start taking any new dietary supplements.

Because IC has many different possible causes, it takes an integrative specialist to effectively diagnose the root cause of your IC and treat that root cause. 

Conventional doctors may say there’s no cure — but we know that in finding and addressing root causes, there is hope for reversal. 

Our very own Soyona Rafatjah, MD, owner of PrimeHealth, spoke to Bustle in 2019:

“I have had patients who were suffering from IC and were able to resolve things after various interventions.

“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 possible inflammatory causes in an individual’s history to come up with the best treatment approach.”

Here at PrimeHealth, we encourage patients along their journey, so what benefits most is their long-term whole-person health. If you or a loved one is suffering from IC, click here to learn more about PrimeHealth’s unique approach to personalized integrative medicine.

When to Call Your Doctor

You should call your doctor if you are having trouble with:

• Urinary frequency
• Urinary urgency
• Pelvic pain
• Pain during sexual activity

If you think you may have interstitial cystitis, visit us at PrimeHealth in Denver, Colorado. We offer free over-the-phone consultations and we reserve Fridays for out-of-town patients.

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