Support Available and Historical Incidence of Vesicovaginal Fistula in the UK

If like me, you were thrown by your diagnosis, and even more thrown that so few medical staff knew what it was, how to deal with it, and more importantly, how to live with it, you might have looked for an organisation or charity supporting patients. You may have discovered, like me, that these fistulas are incredibly rare in many western countries, but far more common in under-developed countries. As such, the only charities supported surgery in under-developed countries, and no support for UK. These are the ones that I found:

1. Freedom From Fistula UK

• A UK-registered charity dedicated to eradicating obstetric fistula through free surgeries and preventative maternal healthcare.
• They operate maternity units and clinics in Sierra Leone, Malawi, and Madagascar, delivering around 3,000 babies per year and offering high-quality prenatal and postnatal care.  
• Their comprehensive approach includes training healthcare workers, empowering survivors through rehabilitation, education, reusable sanitary pads, and income-generating projects.  

2. Fistula Foundation

• While headquartered in the U.S., Fistula Foundation operates globally and accepts donations in UK pounds, making it easily accessible for UK-based supporters.  
• Funded over 100,000 surgeries across 35 countries, including many in Africa and Asia, with treatment networks in Kenya, Zambia, and others.  
• Supports surgery, healthcare professional training, facility upgrades, outreach programs, and patient reintegration.  
• The impact per surgery is very cost-effective (average cost around US $633 plus program-wide expenses) and has robust success rates and charity ratings.  

3. Uganda Childbirth Injury Fund (UCIF)

• A UK-registered charity (No. 1099135) focused on helping women in Uganda who suffer childbirth injuries—including vesicovaginal fistula—due to obstructed labour.  
• Their goal is to support surgical repairs, recognizing that vesicovaginal fistula is typically caused by prolonged obstructed labour, leaving women incontinent for life unless treated.  

The only UK patient support I found initially was:

Additional Resources (More Clinical / UK-Based Information)

• King Edward VII’s Hospital in London provides a Bladder Fistula Service, offering highly specialized diagnosis and treatment for vesicovaginal fistula. Led by Consultant Urologist Mr Jeremy Ockrim, this private service delivers tailored care with no waiting lists—but it is not a charity.  
• The British Association of Urological Surgeons (BAUS) provides clinical patient information about vaginal fistula repair, though they do not engage in charitable activities.  

1. Estimated Annual Cases

• According to London Urology Specialists, about 100–150 cases occur each year in the UK, and this number is noted to be increasing. Nearly all of these cases are iatrogenic—that is, they result from surgical procedures like hysterectomy or Caesarean section—not obstetric causes.  .
• A broader UK-wide figure cited in a research article estimates approximately 120 urogenital fistula repairs per year. This includes vesicovaginal fistula (VVF) among others.  .

Summary:

• Estimated VVF cases per year in the UK: 100–150 cases
• Surgical repairs performed per year (vesicovaginal or urethro-vaginal fistulas): ~120 repairs

Why Precise Numbers Are Hard to Pin Down

• These figures come from clinical observations and hospital-based surgery data, rather than long-term national surveillance.
• Unlike in developing countries where obstetric fistula is often tracked due to its prevalence, the UK relies on routine surgical coding and hospital episode statistics, without mandatory reporting specifically for VVF incidence.

For example:

• NHS data from 2014–15 shows 84 VVF and 13 urethro-vaginal fistula repairs (total 97) in England, not counting additional urinary diversion procedures  .
• There’s no centralized national registry for VVF cases specifically, so national estimates depend largely on aggregated surgical data from hospitals.

What You Can Do to Find or Confirm More Precise Data

1. Review NHS Hospital Episode Statistics (HES): Search for relevant coding such as VVF (N82.0) or related procedures to see reported annual cases.
2. Contact specialised surgical centres or professional bodies:
   • British Association of Urological Surgeons (BAUS) — they may have up-to-date figures or annual reports.
   • Urogynaecology departments at major hospitals or specialist units in England, Scotland, Wales, and Northern Ireland.
3. Look into the NHS England service specifications and audits: NHS England’s urinary fistula service specification for England reports around 160 surgical interventions (repairs or diversions) annually.  

Quick Table Summary

In summary: In the UK, about 100–150 women experience vesicovaginal fistula each year, with around 120 surgical fistula repairs performed annually.

In the UK, vesicovaginal fistula (VVF) is rare and primarily arises as a complication of surgery. Precise data on how many cases go undiagnosed is lacking—but several indicators suggest that underdetection likely occurs, though it’s probably uncommon and may involve only a small number of cases each year.

Why VVF Cases Might Go Undiagnosed

1. Subtle symptoms or misattribution
   • VVF may cause continuous urinary leakage, but if symptoms are mild or gradual, patients or even clinicians might attribute it to stress incontinence or infection, delaying diagnosis.
   • Literature indicates that exact incidence may be obscured in developed countries due to underreporting  .
2. Long-term undiagnosed cases reported
   • There are documented instances where VVF remained undetected for decades. For example, one case report detailed a woman who experienced urinary incontinence for 47 years before diagnosis of VVF  .
   • While exceptional, this highlights how VVF can, in rare situations, persist undiagnosed—particularly if symptoms are ignored or misdiagnosed.
3. Lack of centralized tracking or mandatory reporting
   • The UK lacks a specific registry or mandatory surveillance for fistulas; diagnosis relies on clinical detection during examinations or imaging, which might not happen if symptoms are not alarming.
   • There’s no population-wide screening or proactive follow-up for potential iatrogenic VVF, leading to potential undercounting of mild or subclinical cases.

Estimate of Undiagnosed Cases in the UK

• Total recorded cases per year: Approximately 100–150 cases reported annually in the UK  .
• Undiagnosed cases: No studies provide concrete figures for undiagnosed VVF in the UK. Given its rarity and the fact that most cases produce obvious symptoms, undiagnosed cases are likely very few—perhaps under 5–10 cases annually, if any. But this is speculative; no empirical data confirms it.
• The only concrete evidence comes from rare, highly unusual cases—such as the individual with a 47-year undiagnosed VVF  .

Summary Table

UK VVF Cases & Surgical Operations – Summary

1. Estimated Cases per Year

• Approximately 100–150 VVF cases occur annually in the UK  .
• These typically stem from surgical complications such as hysterectomy or Caesarean section—very different from obstetric fistulae seen in low-resource settings.

2. Surgical Repairs per Year

• Around 120 urogenital fistula repairs are carried out each year in the UK, which includes VVF along with other types like urethro-vaginal fistula  .
• In England specifically, NHS data shows 97 surgical repairs in the 2014–15 period:
  • 84 were VVF repairs
  • 13 were urethro‑vaginal fistula (UVF) repairs
  • Additional urinary diversion procedures (e.g., ileal conduits) are sometimes performed in lieu of repair  .
• The NHS specification estimates that about 160 interventions (repairs and diversions combined) are coded annually  .

3. Historical Perspective

• Older data from England (2002-2006) shows that surgical procedures for female genital fistula increased from 616 to 793  . This includes not only VVF but also rectovaginal fistula repairs, and is not broken down by type.

Quick Reference Table

Key Insights

• Annual volume is modest but consistent, with ~100–150 cases and around 120 repairs.
• Some procedures involve more invasive diversions, increasing the total intervention count to roughly 160.
• This compelling data signals a measurable, albeit niche, patient group, reinforcing the potential impact and importance of a UK-focused VVF charity.

Final Takeaway

While there is no firm data on how many VVF cases go undiagnosed in the UK each year, the condition’s rarity and the clear nature of its symptoms mean undiagnosed cases are likely extremely rare—though exceptional cases (like one undiagnosed for decades) do exist.