Vulvodynia – Bladder Pain Syndrome/Interstitial Cystitis

What is Chronic Urogenital Pain?

What is Chronic Urogenital Pain? The term refers to a group of pain conditions in which the symptoms are specifically linked to the genitourinary systems (reproductive and urinary systems and genital areas). The organs and anatomical regions commonly affected include the urinary bladder, urethra and vulvar areas as well as adjacent structures. This spectrum of disorders includes bladder pain syndrome/interstitial cystitis, vulvodynia as well as other less known conditions such as Persistent Genital Arousal Disorder. Most sufferers also report a range of coexisting conditions and comorbidities, like irritable bowl, allergies, skin and food sensitivities and a range of neuromuscular conditions that include headaches, migraines, lower back pain, fatigue, anxiety and depression.


© Marek Jantos

There is also a very significant overlap in symptoms, pain syndromes and reported areas of pain. In large patient samples we found it difficult to clearly categorize the symptoms and pain locations by exisiting syndrome classifications.

Common Pain Areas in 1160 Women Suffering Chronic Urogenital Pain

Overlaping of Symptoms

© Marek Jantos & Sherie Johns

Chronic urogenital pain is poorly localised and there is little knowledge about its etiology, the mechanisms of pain and of its origins.Our extensive pain mapping studies continue to highlight the sources of pain and triggers of urogenital symptoms. Often the identified origins of pain come from anatomical locations not identified by patients. When examining the external urogenital points some of the pain can be elicited around the vaginal entrance and urethral opening, but more intense pain arises from internal pelvic muscles and structures.

Pain Means by Maps

© Marek Jantos, Sherie Johns & Ewa Baszak-Radomanska

Pain Means by Anatomical Region

The convention of labelling various urogenital pain conditions by the organ affected (i.e., bladder pain and vulvar pain) has been conceptually misleading and often results in treatment that is misdirected. There is little evidence that the pelvic organs are the cause and source of pain. Often the organ affected by the pain is only an innocent bystander. According to current clinical trends the focus is moving away from the end organ, to the region most affected. These pain conditions are seen as regional pain syndromes, in which the pain is poorly localised, affects multiple sites and finds expression in areas outside of the pelvic cavity like the lower back, groin, legs and abdominal areas. The pain can be best described as “referred pain”.

Pain of Paraurethral Origin

© Marek Jantos & Sherie Johns

Individuals commonly report discomfort during sexual activity, voiding problems, urinary urge and frequency, with symptoms varying in intensity. These pain conditions have a debilitating impact and interfere with activities of daily living, intimate relationships, vocational pursuits and reproductive potential. Our research data shows that women often postpone entering into relationships because of pain and low self-esteem.

Age of First Sexual Intercourse

© Marek Jantos

A significant number of married women and women in relationships reported not being able to consumate their marriage through sexual intercourse for 2-15 years into their marriage and relationship. Those who were in relationships reported a significant reduction in sexual desire, with many abstaining from intimate sexual relationships because of their symptoms.

Changes in Sexual Desire

© Marek Jantos

Chronic urogenital pain conditions pose a special challenge to the patient and clinician as the pain can be severe and occur in the absence of any visible pathology. The mechanisms of chronic pain are poorly understood. Most people can only think of pain in terms of acute pain, where a specific injury leads to pain, yet the nature of chronic as opposed to acute pain is vastly different. The onset of pain can on some occasions be traced to recurrent infections, tissue damage and irritation, though characteristically pain symptoms continue well beyond the resolution of such infections and the expected time of healing, consequently making these disorders chronic in their nature.

Women suffering with chronic urogenital pain often report seeing multiple specialists before receiving a diagnosis. On average there is a five to ten year delay from the time of symptom onset to the time of diagnosis.

Number of Medical Consults

© Marek Jantos

They also present with lists of inconclusive tests and investigations and a history of unsuccessful treatment attempts which may include antibiotics, antifungals, corticosteroids, hormone therapies, antidepressants, anticonvulsants, topical anaesthetics and surgical interventions. Failure to correctly diagnose and treat these conditions protracts the suffering of individuals and is disheartening to the patient and clinician, as well as costly to patients and the health care system.

Recent trials of therapy focused on peripheral mechanisms of pain and utilising myofascial and biofeedback therapies show promising potential in resolving symptoms of urogenital pain. As a result sufferers should not despair and give up hope.

This website seeks to provide current up to date information on chronic urogenital pain and introduces innovative assessment protocols and pain management programs developed on the basis of research and clinical experience.