New Ruling on Interstitial Cystitis – Social Security Disability

SSA has issued Social Security Ruling (SSR) 15- 1p, which became effective immediately upon publication. 80 Fed. Reg. 14215 (Mar. 18, 2015). This SSR rescinds and replaces SSR 02-2p, which was issued in 2002.

In Section I of SSR 15-1p, SSA describes interstitial cystitis (IC) as “a complex genitourinary disorder involving recurring pain or discomfort in the bladder and pelvic region.” Some medical providers and organizations, including the American Urological Association, consider the disease synonymous with “painful bladder syndrome” and “bladder pain syndrome.” The SSR states that although it uses the term IC, it is designed to address all three disorders. IC occurs more often in women than men, and can co-occur with disorders including fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, inflammatory bowel disease, vulvodynia, chronic headaches, Sjögren’s syndrome, endometriosis, or systemic lupus erythematosus. It is diagnosed in part by ruling out other disorders with similar symptoms. Tests used to perform this rule-out diagnosis include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall and urethra, distention of the bladder under anesthesia, and culture of prostate secretions. Treatment is generally for the purpose of symptom control, and may not work for everyone.

The new SSR explains in Section II that IC can be a medically determinable impairment (MDI), and describes how adjudicators should evaluate it. It lists specific signs and findings that establish IC as an MDI, despite noting: “There are some signs and findings that could indicate IC, but there are no specific signs or findings that are universally accepted.” The only acceptable medical sources that can provide information about IC as an MDI are licensed physicians (MD or DO), and they must do so after physical exam, review of medical records, and using testing and the patient’s report of symptoms to rule out other disorders. Some of the symptoms that can lead to a diagnosis of IC are urinary frequency and urgency; pain in the bladder, pelvis, genitals, thighs, or back; tenderness on physical examination; sexual dysfunction; and sleep problems, including chronic fatigue or tiredness. If a cystoscopy with bladder distention (a procedure, performed under anesthesia, that fills the bladder with fluid) is performed, doctor can use medical signs like stiffening, pinpoint bleeding, or patches of broken skin on the bladder wall to diagnose IC and determine whether it is an MDI. A urinalysis that shows sterile cultures while symptoms persist, a positive potassium sensitivity test, or accumulation of antiproliferative factor in the urine can also be signs of IC. Anxiety or depression related to IC symptoms, if properly documented, can also help establish IC as an MDI. The SSR notes that its list of signs and symptoms is not intended to be exhaustive, and will likely change as new diagnostic techniques are developed.

Section III of the SSR addresses how IC should be documented, especially since its symptoms often wax and wane over time. Clinical records from medical sources that show evaluation and treatment over time are deemed “extremely helpful.” The SSR also states that evidence from medical sources who are not considered “acceptable medical sources” may also be used, along with third parties like the claimant’s friends, family, employers, clergy, case workers, and SSA staff who interacted with the claimant. Much of the SSR applies existing SSA policy to IC. For example, it states that when adjudication occurs less than 12 months before a claimant’s alleged onset date, SSA will use “information about the person’s treatment and response to treatment, including any medical source opinions about the person’s prognosis at the end of 12 months, helps us decide whether to expect an MDI of IC to be of disabling severity for at least 12 consecutive months.” Also, once an individual is found to have an MDI of IC, the adjudicator must proceed through the sequential evaluation process, determining whether the MDI is “severe,” whether the claimant meets or equals a listing (there is no listing for IC itself), and if not, what the claimant’s residual functional capacity is and whether is allows a return to past or other work. Some of the language in the SSR’s discussion of steps 4 and 5 of the sequential evaluation process in an IC case could be useful when claimants have other impairments or side effects from medication:

"[W]e must consider all of the person’s impairment-related symptoms in deciding how such symptoms may affect functional capacity. For example, many people with IC have chronic pelvic pain, which can affect the ability to focus and sustain attention on the task at hand. Nocturia may disrupt sleeping patterns and lead to drowsiness and lack of mental clarity during the day. Urinary frequency can necessitate trips to the bathroom as often as every 10 to 15 minutes, day and night. Consequently, some individuals with IC essentially may confine themselves to their homes….Pain and other symptoms associated with IC may result in exertional limitations that prevent a person from doing a full range of unskilled work in one or more of the exertional categories in appendix 2 of subpart P of part 404 (appendix 2).People with IC may also have nonexertional physical or mental limitations because of their pain or other symptoms. Some may have environmental restrictions, which are also nonexertional….Adjudicators must be alert to the possibility that there may be exertional or nonexertional (for example, postural or environmental) limitations that erode a person’s occupational base sufficiently to preclude the use of a rule in appendix 2 to direct a decision. In such cases, adjudicators must use the rules in appendix 2 as a framework for decision-making and may need to consult a vocational resource."

The new SSR is available on SSA’s website at The Federal Register notice is at

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