Earlier this year, the International Continence Society released new terminology standards to aid in the diagnosis of ALL chronic pelvic pain disorders, including those that affect the bladder(1). This is a powerful document that will help physicians and patients identify and classify potential sources of their pelvic pain.
Consider the plight of a young patient with “bladder pain.” Their first stop might be their primary care provider who, usually, will suggest that a UTI is present. Women who seek care for their pelvic pain from their OB-GYN are often told that their reproductive organs are the cause of their distress. Men are labelled as “chronic prostatitis” and prescribed a variety of prostate medications that provide little, if any, relief for their bladder pain symptoms. From rectal distress to pain with orgasm, patients struggle to find comprehensive care, especially when their symptoms cross the lines of several medical specialties (i.e. urology, gynecology, gastroenterology, neurology, pelvic floor, etc.).
Nine Domains of Pelvic Pain
The ICS international committee has defined nine distinct domains which could be contributing to pelvic pain, thus should be evaluated. As you review this list below, ask yourself where do you fit? Which types of pain and/or discomfort do you have?
1. Lower Urinary Tract Domain
2. Female Genital Domain
- Vulva, vestibule and clitoris
- Intra-abdominal female genital pain
- Pelvic floor pain
- Female Sexual Pain
3. Male Genital Domain
- Sexual Pain
4. Gastro-Intestinal Domain
5. Musculoskeletal Domain
- Pelvic muscle pain
- Coccyx pain syndrome.
- Pelvic joint, ligament or bony pain
6. Neurological Domain
- Complex regional pain syndrome (CRPS)
- Somatic neuropathic pain
- Pain following mesh surgery
7. Psychological Domain
- Worry, anxiety and fear
- Depression and depressed mood
8. Sexual Domain
- Sexual desire disorder
- Sexual arousal disorder
- Orgasmic disorder
- Sexual paindisorder
- Chronic pain and fatigue syndromes
- Systemic autoimmune syndromes/disease
- Extraintestinal manifestations of inflammatory bowel disease
You may be asking why there is a psychological domain for chronic pelvic pain. The committee correctly acknowledges that worry, anxiety, frustration, helplessness, hopelessness are often seen in patients with chronic pain of any type. High levels of pain are interpreted as something seriously wrong with the body yet, without an explanation for that pain from their doctors, anxiety can occur. Similarly, depression occurs when patients lose activities that they value and/or if they struggle with finding help for their pain. Catastrophizing is also seen in IC and pain patients where the patient may worry and/or overestimate their reaction to an event (i.e. If I try to travel I’ll have a terrible IC flare.). Properly assessing these symptoms actually strengthens and supports and diagnosis of chronic pain. Treatment, of course, is also important.
Patients who struggle with multiple pain disorders (i.e. IBS, vulvodynia, prostatodynia, fibromyalgia) fall into a distinct subtype for IC/BPS known as functional somatic syndrome. Sometimes inherited or the result of traumatic injury, patients with FSS have unusually sensitive nervous systems. (see below)
Types of Pain
If you talk with a large group of IC patients you notice, very quickly, that they have very different ways of describing their pain and discomfort. Some can locate their pain (i.e. it’s on the right side of my bladder) while others can only vaguely point to the pelvis and/or say that “it burns.” Some experience consistent pain while others struggle with random, intermittent pain. Clearly, a “one size fits all” assumption about bladder and/or pelvic pain just doesn’t work.
A. Nociceptive Pain comes from actual damage to non-neural tissues.
B. Somatic pain comes from bone, joints, muscles, skin or connective tissue. It can cause throbbing, itchy sensations. It’s also easy to locate!
C. Visceral pain comes from hollow organs, such as the bladder or bowel. It can cause generalized cramping which can be difficult for the patient to locate. Visceral pain can come from: (1) direct injury to the organ (i.e. a surgical injury, chemotherapy, etc.), (2) Inflammation (i.e. infection, colitis, endometriosis) and (3) neuropathic/nerve dysfunction (i.e. neuritis following mesh placement).
D. Neuropathic pain can come from an injury to the nervous system and often causes a burning pain. Patients may develop chronic regional pain syndrome where even small stimuli can trigger intense discomfort.
E. Hypersensitivity occurs when nerves become more active even from the smallest stimulation. We see this in patients who have functional somatic syndrome, characterized by very sens