Resources You Should Know If You Have VVF

Living with vesicovaginal fistula (VVF) can feel overwhelming, especially when you don’t know where to turn for information or support. Alongside medical care, there are resources that can help you understand your options, find community, and get the support you deserve.

Medical & Specialist Resources

• NHS Specialist Centres – In the UK, VVF repairs are usually carried out in specialist urogynaecology or urology centres. Ask your GP about referral options.
• Patient Information Leaflets – Hospitals often provide leaflets on surgery, recovery, and catheter care. Request these at your appointment.
• Clinical Nurse Specialists – Some centres have specialist nurses who can answer questions and offer ongoing support.

Emotional & Peer Support

• Counselling or Psychotherapy – Talking to a professional can help with the emotional impact of VVF, especially if it followed surgery or childbirth trauma.
• Peer Support Groups – Connecting with others who have been through VVF can reduce isolation and help you feel understood.
• Charities & Organisations – Groups like VVF Support UK provide safe spaces, advice, and advocacy.

Practical Support

• Continence Services – Many NHS trusts have continence nurses who can provide advice on pads, skincare, and managing leakage.
• Physiotherapy – Specialist pelvic health physiotherapists can support recovery and overall wellbeing.
• Financial or Travel Help – Some hospitals can advise on travel assistance schemes or expense reimbursement if you need to travel far for specialist care.

Global & Online Resources

• WHO & Fistula Foundation – For background on VVF worldwide, these organisations share research and global support initiatives.
• Online Forums & Helplines – Carefully chosen online communities can offer connection and information, though always check advice with a clinician.

Key Takeaway

When facing VVF, you deserve not only medical care but also emotional, practical, and community support. Ask your doctor, nurse, or support worker about:

• Specialist centres and nurses
• Peer and counselling services
• Practical continence or travel support

🌸 At VVF Support UK, we’re here to help you navigate these resources so that you never feel alone.

Additional Resources to Know If You Have VVF

Living with or recovering from vesicovaginal fistula (VVF) isn’t just about medical treatment—it’s also about having the right support, information, and connection to the right services. Here’s a guide to resources you can ask about or access:

1. NHS Specialist Fistula Services

• The NHS has commissioned specialist centres dedicated to treating VVF and urethrovaginal fistula (UVF) in England  .
• These services provide comprehensive care from diagnosis through surgery and follow-up. Referrals typically come via GPs, gynaecologists, urologists, or colorectal teams  .
• High-volume centres have significantly better outcomes and lower failure rates, including the ability to offer less invasive vaginal repairs with quicker recovery  .

2. Private Specialist Care

• King Edward VII’s Hospital in London offers private “Bladder Fistula Service” clinics with rapid access, no waiting lists, and personalised plans. Consultant Jeremy Ockrim leads a multidisciplinary team experienced in managing complex fistula cases  .
• If you are exploring private healthcare options, it may be worth asking your GP about referrals to such services.

3. Local Urogynaecology Clinics

• Many NHS hospitals offer urogynaecology services, which include assessment and treatment for bladder conditions such as VVF  .
• These clinics may provide investigations like cystoscopy, imaging, and initial counselling.

4. Informational Leaflets & Trusted Guides

• The British Association of Urological Surgeons (BAUS) publishes evidence-based leaflets that explain surgical procedures, recovery, and alternatives like catheterisation or abdominal repair  .
• Hospitals such as Saint Mary’s in Manchester also provide patient-facing leaflets that explain VVF in straightforward terms  .

5. Tailored Patient Support

• Clinical Nurse Specialists (CNSs) often work alongside surgeons and can answer questions about catheter care, recovery, or referrals.
• Many hospitals or private services offer one-stop clinics, where key investigations and consultations can happen in a single visit  .

6. Peer Support & Charitable Resources

• Organisations like VVF Support UK provide peer support, community connection, and up-to-date guidance for patients navigating VVF, from symptoms to post-treatment wellbeing.

Summary: What to Ask or Look For

Key Takeaway

You don’t have to navigate VVF on your own. NHS specialist centres, private services like King Edward VII’s, urogynaecology clinics, educational leaflets, and peer support are all valuable resources. Ask your GP or care team—knowing what’s out there can help you feel supported and informed.

Here’s a comprehensive resource directory (PDF) for anyone facing VVF, listing key services and support options across the UK. It includes both NHS and private pathways, plus recommended informational resources.

What’s Included in the Directory:

• NHS Specialist Fistula Centres
  • The NHS commissions specialist VVF and UVF services that accept referrals from GPs, gynaecologists, urologists, and colorectal teams  .
• Care Pathway Overview
  • Referral pathways are designed for timely diagnosis and treatment—urgent (within 3 weeks post-surgery) or planned repair (3–6 months after) via multidisciplinary teams.
• King Edward VII’s Hospital Bladder Fistula Service
  • A private option offering rapid access, no waiting lists, and a multidisciplinary team led by Consultant Urologist Jeremy Ockrim, with MRI and CT-based diagnosis.
• Patient Information Leaflets
  • Evidence-based procedure leaflets from the British Association of Urological Surgeons (BAUS) providing clear guidance on repair options. Additional patient-facing information is available from urogynaecology services like Manchester’s Saint Mary’s Hospital.
• Helpful Local Services
  • Many hospitals, including general and private ones, offer continence teams, urogynaecology clinics, and clinical nurse specialists to support your journey.
• Peer Support and Charitable Helplines
  • Organisations such as VVF Support UK provide community, advocacy, and connection for those navigating VVF—downloadable materials include mental health guidance and emotional support tools.

Resource Directory

What Is Included:

1. NHS Specialist Fistula Services

These personalised care pathways are commissioned across England for women aged 16 and above with vesicovaginal (VVF) or urethrovaginal fistula (UVF). Referrals can be made by GPs, gynaecology, urology, colorectal clinicians, or other specialist healthcare providers  .

2. Private Specialist Option

King Edward VII’s Hospital – Bladder Fistula Service

Led by Consultant Urologist Jeremy Ockrim, this private clinic offers rapid, tailored access with no waiting lists and multidisciplinary support. It also includes advanced diagnostic techniques like MRI and CT scans  .

3. Patient Information Leaflets

• BAUS (British Association of Urological Surgeons) provides clear, evidence-based leaflets that explain fistula repair methods (vaginal, abdominal, or minimally invasive)  .
• Saint Mary’s Hospital (MFT) offers accessible patient information, including diagnostic tests and treatment options  .

4. Recognised Specialists

Mr Jeremy Ockrim is an internationally-regarded expert in female reconstructive urology, based at UCLH and King Edward VII’s Hospital. His expertise spans VVF repair, incontinence, and complex urological reconstructions  .

Summary Table: What to Ask or Know