IC Survey: Understanding Interstitial Cystitis Through Patient Research

In 1999, the COB Foundation conducted the first dedicated survey of interstitial cystitis (IC) patients in the United Kingdom. The study collected data directly from charity members, turning anecdotal observations into documented evidence. The findings challenged long-held medical assumptions and gave a clearer picture of how IC actually affects patients’ daily lives.

Why this survey mattered

Before this survey, most information about IC in the UK came from clinical observations by urologists who saw patients in hospital settings. These observations were useful but incomplete. Doctors saw patients during consultations and procedures but had little insight into how symptoms affected jobs, marriages, or whether someone could sit through a film without needing the toilet.

Patient surveys fill this gap. When you ask people with IC about their experiences directly, patterns emerge that clinical data alone cannot capture. How long did symptoms persist before diagnosis? What happens to someone’s career when they need to use the toilet every thirty minutes? How does chronic pelvic pain affect intimate relationships?

The 1999 survey was presented to Members of Parliament at a reception in the Jubilee Room at the House of Commons on 27th April 1999. This gave IC visibility at the political level and helped advocate for better recognition and resources for patients with painful bladder syndrome.

Challenging outdated beliefs

The survey helped debunk two persistent myths about who gets IC.

The post-menopausal myth: For years, IC was believed to primarily affect post-menopausal women. This assumption likely arose because older women are more likely to seek medical attention and because some IC symptoms overlap with hormonal changes. The survey data showed clearly that IC affects women across all age groups, including those in their twenties and thirties 1.

The women-only myth: IC was also assumed to be exclusively a female condition. While women do make up the majority of diagnosed cases (estimates suggest roughly 80-90% of IC patients are female), men can and do develop the condition. The survey confirmed male respondents, challenging the notion that IC screening or treatment should focus solely on women 2.

These corrections matter because mistaken beliefs about who gets a condition lead to delayed or missed diagnoses. A 35-year-old woman presenting with IC symptoms might have been told she was “too young” for the condition. A man with identical symptoms might have been told IC was impossible because he was male. The survey evidence helped counter these dismissals.

What the survey measured

The COB Foundation survey covered several key areas:

Demographics

The survey collected basic information about respondents: age at first symptoms, current age, sex, and geographic location. This demographic data established the breadth of the IC population and showed that the condition does not discriminate by age or region.

Diagnosis journey

The most striking finding concerned how long patients waited for a correct diagnosis. Interstitial cystitis symptoms, particularly frequent urination and pelvic pain, overlap with more common conditions like urinary tract infections and overactive bladder. Many patients reported years of being told they had recurrent infections despite negative urine cultures, or being diagnosed with conditions that did not fully explain their symptoms.

This diagnostic delay is not unique to the UK. Studies from other countries have found similar patterns, with average delays ranging from four to seven years between symptom onset and IC diagnosis 3. Each year of delay represents ongoing suffering, missed treatment opportunities, and often psychological distress from feeling unheard or dismissed.

Symptom patterns

The survey documented the specific symptoms experienced by respondents, including urinary frequency (daytime and nighttime), urgency, pain locations, and pain severity. This information helped characterise the typical IC presentation and highlighted the variability between patients.

Some respondents reported urinating twenty or more times per day. Others described pain severe enough to prevent sitting or working. The range of presentations reinforced that IC is not a single uniform condition but rather a spectrum of severity and symptom combinations.

Quality of life impacts

Perhaps the most revealing section of the survey addressed how IC affected daily life. Respondents reported impacts on:

Employment: Many patients had reduced their working hours or left employment entirely due to symptoms. Frequent toilet breaks, difficulty concentrating through pain, and unpredictable flare-ups made maintaining regular work extremely challenging. The financial consequences extended beyond lost income to include treatment costs and adaptations.

Relationships: Chronic pain and urinary symptoms take a toll on intimate relationships. Some respondents reported strain with partners and reduced intimacy. Others described social isolation. When you always need to know where the nearest toilet is, spontaneous plans become difficult.

Mental health: Living with an invisible chronic condition that many people do not understand or take seriously affects mental wellbeing. Survey respondents reported anxiety and depression. Many also expressed frustration with their medical care, particularly when symptoms were dismissed or misdiagnosed.

Daily activities: Simple things become difficult with severe IC. Sitting through a film, taking a car journey, attending meetings, or enjoying a meal out all become challenging when you need immediate toilet access and suffer constant discomfort.

Healthcare utilisation

The survey also tracked how often respondents saw their GP, visited hospital consultants, and took sick leave from work. These numbers helped quantify the burden IC places on both patients and the healthcare system. Frequent GP visits for recurring symptoms that never quite resolve, referrals to multiple specialists, and investigations that rule out other conditions all consume resources.

The prevalence question

At the time of the survey, IC prevalence in the UK was poorly understood. International data suggested the condition might be more common than previously assumed.

A 1999 report in the Journal of Urology concluded that IC incidence in Europe might be approximately 67 cases per 100,000 population, roughly three times higher than earlier estimates 1. Some researchers, including Dr C. Lowell Parsons speaking at an International Cystitis Association conference in Germany in 1997, proposed that IC prevalence could be as high as 2% of the adult female population.

These figures have been debated and refined since 1999, but the general direction has been toward recognising IC as more prevalent than once thought. Current estimates from the National Institute of Diabetes and Digestive and Kidney Diseases suggest that between 3 and 8 million women and 1 to 4 million men in the United States may have IC symptoms, though the exact numbers depend on diagnostic criteria used 4.

Limitations of patient surveys

Patient surveys provide real-world insights that clinical studies miss, but they have methodological limitations worth acknowledging.

Selection bias: Survey respondents were COB Foundation members, meaning they had already sought support for their condition. This may skew toward more severe or persistent cases compared to the general IC population. People with milder symptoms who manage without support groups would not be represented.

Self-reported data: All information came from patient responses rather than clinical verification. Some diagnoses may have been incorrect, and symptom descriptions are subjective.

Snapshot in time: The 1999 survey captured a moment. IC understanding, treatment options, and diagnostic criteria have evolved considerably since then.

Despite these limitations, the survey remained valuable evidence for years and helped shape advocacy and awareness efforts.

The need for updated research

No comprehensive UK survey of IC patients has been conducted since 1999. This means current statistics are somewhat unclear, and our understanding of how IC affects UK patients today relies on extrapolation from older data and research conducted in other countries.

Medical practice has changed since 1999. Awareness of IC has increased among urologists, though primary care recognition remains patchy. New treatments have emerged, including various bladder instillation therapies. Diagnostic approaches have evolved, with some clinicians now recognising IC as part of a broader spectrum of chronic pelvic pain conditions.

A new survey could answer important questions:

• Has increased awareness shortened diagnostic delays?
• Which treatments are patients actually finding helpful?
• How has quality of life changed with expanded treatment options?
• Are there demographic shifts in who is being diagnosed?
• What role do online communities and information access play in patient experiences?

Getting involved

The COB Foundation has expressed interest in conducting an updated survey of its members to refresh the data from 1999. Research of this kind requires funding and careful planning to ensure the results are scientifically useful.

If you are interested in supporting research into IC, whether through funding, helping develop survey methodology, or participating as a respondent, the foundation welcomes contact. Updated patient data would benefit the entire IC community by informing advocacy, helping healthcare providers understand patient needs, and potentially guiding research priorities.

For researchers or clinicians wishing to use the original 1999 survey statistics for academic work or clinical studies, the COB Foundation can provide the full survey report and additional context.

What we have learned since 1999

Research since the 1999 survey has expanded our understanding of IC considerably. We now recognise that IC may exist on a spectrum with other chronic pain conditions including fibromyalgia and irritable bowel syndrome 2. The concept of “bladder pain syndrome” has been introduced to encompass cases that meet symptom criteria but lack classic IC findings on cystoscopy.

Treatments have expanded beyond oral medications to include intravesical therapies, pelvic floor physiotherapy, and neuromodulation options. Dietary management, once overlooked, is now recognised as helpful for many patients. The IC/PBS diet approach has become a standard recommendation.

Fundamental questions remain unanswered. We still do not understand what causes IC, why it affects some people and not others, or why treatments that help one patient may fail completely for another. Until researchers crack these puzzles, patient surveys remain one of our best tools for understanding what living with this condition actually looks like.

Final thoughts

The 1999 COB Foundation IC survey was patient-led research that challenged medical assumptions and documented real suffering. It gave voice to a patient population that often felt invisible. While the data is now dated, the approach behind it still matters.

For anyone living with IC symptoms, knowing that research has documented your experience, even decades ago, can be validating. You are not imagining your symptoms. You are not alone. And the more we collect and share information about IC, the better positioned we are to advocate for improved care and eventually, better treatments.

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References

1. Curhan GC, et al. Epidemiology of interstitial cystitis: a population based study. J Urol. 1999;161(2):549-552. PubMed

2. Alagiri M, et al. Interstitial cystitis: unexplained associations with other chronic disease and pain syndromes. Urology. 1997;49(5A Suppl):52-57. PubMed

3. Nickel JC, et al. Interstitial cystitis: a chronic pelvic pain syndrome. Int J Antimicrob Agents. 2011;38(Suppl):92-97. PubMed

4. National Institute of Diabetes and Digestive and Kidney Diseases. Definition & Facts for Interstitial Cystitis. NIDDK