Social Security (“SSA”) defines interstitial cystitis as a complex condition that causes pain or discomfort in the bladder and pelvic region that has lasted at least 6 weeks and cannot be explained by another cause, such as a urinary tract infection or kidney stones. Interstitial cystitis is most common in women. It is common for people to have symptoms such as urinary frequency and bladder pain for many years before even being diagnosed.
In Social Security Ruling 15-1p, SSA explains what evidence is needed to establish a medically determinable impairment of interstitial cystitis and how interstitial cystitis will be evaluated. The policy developed by SSA is based largely on guidelines developed by the American Urological Association and the National Institute of Diabetes and Digestive and Kidney Diseases. SSA will be looking for sufficient objective evidence to support a finding that your interstitial cystitis, or your interstitial cystitis in combination with any other impairments, prevents you from performing substantial gainful activity. Substantial gainful activity is the ability to work full-time, generally 8 hours a day, five days a week.
How do I show Interstitial Cystitis is a medically determinable impairment?
SSA will only find interstitial cystitis is a medically determinable impairment if it has been diagnosed by a physician. However, they will not rely on a diagnosis alone. Your diagnosis must be consistent with the evidence in your case record. This means a diagnosis of interstitial cystitis also requires that supporting testing and ruling out other diseases that can cause your symptoms, such as kidney stones or a urinary tract infection.
SSA recognizes that interstitial cystitis will vary from person to person. Sometimes the symptoms will vary in the same person. For example, some symptoms may worsen around the time of menstruation. Symptoms include, but are not limited to:
- Chronic bladder and pelvic pain that ranges from mild to extreme. Intensity may worsen as the bladder fills. People with interstitial cystitis may experience vaginal, testicular, penile, low back or thigh pain.
- Urinary urgency and/or frequency. This may interfere with sleep.
- Suprapubic tenderness on physical exam, sexual dysfunction, sleep dysfunction, and chronic fatigue.
Medical signs that support a diagnosis of interstitial cystitis include:
- Bladder-wall stiffening (fibrosis)
- Pinpoint bleeding on the bladder wall (diffuse glomerations)
- Hunner’s ulcers (patches of broken skin on bladder wall)
SSA will look at whether your medical provider has performed a physical exam and reviewed your medical history. They will evaluate whether your medical provider’s treatment notes are consistent with the diagnosis of interstitial cystitis and consistent with any work-related limitations.
What kind of documentation will SSA be looking for?
- Objective medical evidence will be most important. Specific testing that Social Security will look for in evaluating interstitial cystitis includes a) repeated testing showing there is no urinary tract infection despite interstitial cystitis symptoms; b) a positive potassium sensitivity test (Parson’s test); and c) testing showing antiproliferative factor (APF) in the urine. A cystoscopy is often done to visually examine the bladder.
- Your report of symptoms will also be evaluated. It is important that your report of symptoms is consistent with the objective medical evidence and supported by the other evidence in the record. Social Security is looking at how interstitial cystitis affects your ability to work. This might be chronic pelvic pain that affects your ability to focus or concentrate, urinary frequency and urgency requiring frequent bathroom breaks, or interrupted sleep leading to daytime drowsiness. Whatever your specific symptoms from interstitial cystitis, they need to be documented in the record both in your statements to Social Security and in the record submitted by your medical providers. Consider keeping a diary to document symptoms like the frequency of urination, pain, and response to treatment.
- Evidence from non-medical sources can be helpful. This may be evidence from friends, family members, former employers, or clergy. This kind of evidence cannot be used to establish a diagnosis of interstitial cystitis, but can help SSA determine the severity of your interstitial cystitis and how it impacts your ability to function.
What can I do now?
- If interstitial cystitis is part of your disability claim, we need to have a clear diagnosis. Some people have symptoms of interstitial cystitis for years before they are diagnosed. It is important for you to have a clear diagnosis in the file accompanied by testing or other objective findings. It is not enough that your provider notes that your symptoms might be caused by interstitial cystitis. A diagnosis must be accompanied by testing supportive of an interstitial cystitis diagnosis and tests to exclude other conditions that could cause your interstitial cystitis symptoms. Start talking to your provider now to create a consistent, supportable record.
- In addition to having a supported diagnosis in the file, be sure you communicate with your provider and with us any co-occurring conditions you may have. People with interstitial cystitis may also be diagnosed with disorders such a fibromyalgia, chronic headaches, chronic fatigue syndrome, Sjogren’s syndrome, systemic lupus, depression, and anxiety.
- Stay compliant with medication and treatment. Generally, treatment for interstitial cystitis is directed at symptom control and may include diet changes, physical therapy, home exercise, stress reduction, and medication. If you are not willing to take medications or otherwise comply with your provider’s recommended treatment for your interstitial cystitis, please let us know why. A failure to follow through with recommended treatment can be seen as an indication that your interstitial cystitis is not as severe as you say. We want to make sure SSA understands your specific situation.
- If possible, undergo any testing recommended by your provider. Some of the specific testing important to a claim involving interstitial cystitis is discussed above. Treatment for interstitial cystitis may require you to see a specialist. Always let us know if you are unable to undergo any recommended testing due to issues such as finances or insurance issues.
- Interstitial cystitis is not always an easy disorder to understand. As mentioned above, it can be helpful to keep a diary tracking how often you are having symptoms, how long symptoms last, symptom severity, and any activities missed due to your interstitial cystitis.
Remember, interstitial cystitis is an impairment that is not always well understood. Not everyone will have the same symptoms or limitations. It is important for us to help SSA understand the specific way you are affected by interstitial cystitis.