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Interstitial Cystitis

The Facts

Interstitial Cystitis/Painful Bladder Syndrome is common, affecting up to 12 million people in the United States alone. IC/PBS is a clinical diagnosis of exclusion, which means the diagnosis is made by ruling out other symptom causes, such as infections. Less than 10% of people diagnosed with IC/PBS have Hunner’s Lesions on the bladder lining, these lesions are identified via cystoscopy. The majority of patients have other causes of their symptoms. The three main subtypes are pelvic floor dysfunction, hormonal deficiencies, and central nervous system dysregulation. The diagnosis is made based on symptom report alone for most people.

Symptoms

  • Urinary urgency, frequency, and pain in the absence of infection
  • Lower abdominal pressure
  • Pain upon bladder filling or emptying
  • Painful sex
  • Painful orgasm
  • Generalized pelvic pain
  • Nocturia (waking at night to urinate)
Interstitial Cystitis Berkeley Symptoms

Symptoms

  • Urinary urgency, frequency, and pain in the absence of infection
  • Lower abdominal pressure
  • Pain upon bladder filling or emptying
  • Painful sex
  • Painful orgasm
  • Generalized pelvic pain
  • Nocturia (waking at night to urinate)
Interstitial Cystitis Berkeley Symptoms

Associated Diagnoses

IC/PBS is considered a chronic overlapping pain condition (COPC). Many people who have the symptoms of IC/PBS may also suffer from Vulvodynia, Endometriosis, Fibromyalgia, TMJ, and migraines. All of these conditions are associated with pelvic floor dysfunction and pelvic floor physical therapy can help!

Interstitial Cystitis Myths
Interstitial Cystitis facts
cause of interstitial-cystitis

Causes of IC/PBS

  • Pelvic floor dysfunction
  • Hormonal deficiencies
  • Central Nervous Dysfunction
  • Repetitive Urinary Tract Infections
  • Orthopedic injuries/trauma
  • Surgical trauma
  • Endometriosis
  • GI dysregulation
cause of interstitial-cystitis

Causes of IC/PBS

  • Pelvic floor dysfunction
  • Hormonal deficiencies
  • Central Nervous Dysfunction
  • Repetitive Urinary Tract Infections
  • Orthopedic injuries/trauma
  • Surgical trauma
  • Endometriosis
  • GI dysregulation

Diagnostic Challenges

Many experts understand IC/PBS and its various subtypes, recognizing that IC/PBS is not a disease of the bladder but rather a syndrome that can be managed with effective interdisciplinary, coordinated care. The majority of urologists in the US have not undergone training in pelvic pain syndromes, including IC/PBS, which leads to misdiagnosis and management. The American Urologic Association updated the IC Guidelines in 2022, stating that manual pelvic floor physical therapy should be offered to all people who meet the diagnostic criteria for IC/PBS.

Diagnostic Challenges

Treatment:

How we can help you

pelvic pain rehab

If you are having issues with your sexual function, it is in your best interest to get evaluated by a therapist for pelvic floor therapy, so they can establish what part, if any, of your pelvic floor may be contributing to the symptoms you are experiencing. During the course of the examination, the physical therapist will talk to you about your medical history and symptoms, including what you have been previously diagnosed with, the treatments or therapies you have had, and how effective or ineffective these therapies have been for you. It is significant to mention that we fully comprehend what you’ve been dealing with and that the majority of individuals are angry by the time they make it to see us. The physical therapist will conduct an evaluation of the patient’s nerves, muscles, joints, tissues, and movement patterns while doing the physical examination. After the examination is finished, your therapist will go over the results of the assessment with you. The physical therapist will conduct an evaluation to determine the cause of your symptoms and will establish both short-term and long-term therapy goals based on the results of the evaluation. Physical therapy treatments are typically administered between once and twice each week for a period of around 12 weeks. Your physical therapist will assist you in coordinating your recovery with all the other experts on your treatment team. They will provide you with an exercise regimen to complete at home and the sessions you attend in person. We are here to assist you in getting better and living the best life possible.

For more information about IC/PBS please check out our IC/PBS Resource List.

pelvic pain rehab

Treatment:

How We Can Help You

Frequently Asked Questions

What is Interstitial Cystitis (IC)?

IC is a syndrome characterized by some or all of the following symptoms, which are present without evidence of infection or disease: urinary urgency, frequency, hesitancy, and bladder pressure or pain that persist for at least weeks.

Is a cystoscopy needed to diagnose IC?

A cystoscopy can confirm the presence of Hunner’s Ulcers but is not recommended or required to make a diagnosis of Interstitial Cystitis.

What are common symptoms of Interstitial Cystitis?

Urinary urgency, frequency, hesitancy, pain upon bladder filling, urethral and/or lower abdominal pain, and/or painful sex.

What are recommended treatments for people with IC?

People experience IC for different reasons. Recommended treatments include pelvic floor physical therapy, oral medications, and various procedures depending on the underlying cause of someone’s symptoms.

How common is it for people with IC to also have pelvic floor dysfunction?

Multiple studies conducted in the US and abroad show that up to 92% of people with IC/Painful Bladder Syndrome have pelvic floor dysfunction. The prevalence is so high that the American Urologic Association classified pelvic floor dysfunction as a cause of these symptoms.

How common is it for people with IC to have vulvodynia?

Many people with irritative bladder symptoms also experience painful sex and vulvar pain. Unfortunately, people may be diagnosed with vulvodynia if they see a gynecologist and IC/PBS if they see a urologist. It is important to realize that the majority of physicians have not had medical training in either diagnosis which leads to confusion in patients about what their diagnosis actually is. The terms “vulvodynia” and “IC/PBS” describe the pain but do not tell us why people have their symptoms. It is important to determine the underlying cause of the pain versus simply naming it. Interdisciplinary collaboration that includes medical and physical therapy providers can help people understand why they have their pain and assist with a treatment plan to effectively treat it.

Are there exercises that can make IC symptoms worse?

When people suffer from ‘tight’ pelvic floor muscles exercises that cause these muscles to further contract may exacerbate their symptoms. Examples of muscles that may make people feel worse include kegel exercises, “clam shells” exercises, sit-ups, and lunges/squats with heavy weights.

Are there exercises that can make IC symptoms better?

Diaphragmatic breathing can help calm the nervous system and in turn may help reduce symptoms. Home exercises are given as part of a pelvic floor physical therapy treatment plan and the exercises are individualized to address the patient’s specific needs.

What are different causes of IC?

Some people develop IC symptoms after a series of culture-proven UTIs, the symptoms can persist when the infection has cleared. Others may develop symptoms in response to hormonal deficiencies, which can occur from using oral contraceptive birth control bills, certain prescription acne medications, while breast feeding, or in perimenopause/menopause. Others may develop pelvic floor dysfunction first from various sedentary or athletic activities. Some people have central nervous system sensitivities and develop IC and widespread body pain. IC is commonly seen in people with vulvodynia, endometriosis, and fibromyalgia. Understanding the underlying cause/causes is part of what we work to figure out during pelvic floor physical therapy.

Do all physical therapists know how to treat IC?

No. Physical therapy and medical school education has very little information on pelvic pain syndromes, including IC/PBS, despite the high volume of people affected. Physical therapists can specialize in pelvic floor dysfunction through post- graduate education, however, not all pelvic floor therapists have training in pelvic pain syndromes such as IC/PBS.

What does a PT evaluation for IC entail?

A pelvic floor physical therapy examination involves a thorough history, an external and internal manual evaluation, and an assessment of neuromuscular control and biomechanics. We then discuss our findings with our patients, creating an assessment. This includes short term goals to reduce the causes of symptoms and long term goals regarding returning normal function and quality of life. The frequency and duration of pelvic floor physical therapy varies from case to case.

How many physical therapy visits does it typically take for people with IC to feel better?

This will vary from case to case depending on the severity and chronicity of someone’s symptoms. In general, most people have had symptoms for at least 6 months prior to finding us, and more often symptoms for years. In general people usually come to physical therapy for at least two month, once per week.

Why didn’t my doctor tell me about pelvic floor physical therapy?

Unfortunately the majority of physicians in the US did not have training about pelvic floor dysfunction, therefore, they do not understand that pelvic floor physical therapy is the primary treatment for IC.

Can menopause cause IC?

Hormonal deficiencies cause irritative bladder symptoms and increase the risk of recurrent urinary tract infections. Therefore, menopause and and IC diagnosis may be given to the same person, effective treatment will involve hormone therapy and pelvic floor physical therapy.

Can birth control pills cause IC?

Yes. Birth control pills cause hormonal deficiencies and can cause irritative bladder symptoms, vulvar pain, and recurrent UTIs.

What are IC subtypes?

In 2022 the American Urologic Association (AUA)updated their guidelines to state that IC/PBS is no longer considered solely a bladder disease but rather a syndrome with different subtypes. Less than 10% with IC symptoms have Hunner’s Ulcers, which are lesions on the lining of the bladder itself. A second subgroup of people have pelvic-floor focused issues as a source of their pain. A third group reports more widespread and diffuse body pain, meaning at least some of their symptoms are also outside of the bladder.

A pelvic floor physical therapy evaluation is recommended to help people determine if pelvic floor dysfunction is contributing to their symptoms. If pelvic floor dysfunction is found the AUA recommends manual pelvic floor physical therapy as part of the treatment plan.

Is it normal to flare after pelvic floor physical therapy?

Manual therapy may result in soreness for up to 72 hours after therapy but should not cause an exacerbation of the symptoms themselves. However, many people with IC/PBS have sensitized nervous systems and may respond disproportionately to physical therapy and home exercises. If this happens recurrently medical management in conjunction with pelvic floor physical therapy can help.

Do I need a physician’s prescription to come to physical therapy?

Most states have Direct Access laws, which means people can start physical therapy without a doctor’s prescription. Some states and insurance carriers require that a physician signs off on the treatment plan in order for physical therapy to continue past a certain number of treatments.