Related UK organisations include:

  • the Bladder and Bowel Community providing information and support for bladder and bowel control related problems for patients, their families, carers and healthcare professionals. They can be contacted on 01926 357220.
  • Bladder Health UK, which offers support and information about related syndromes including interstitial cystitis or painful bladder/bladder pain syndrome as well as bacterial cystitis, overactive bladder and incontinence. Their confidential advice helpline is 0121 702 0820.
  • Lichen Sclerosus and Vulval Cancer UK Awareness, which offers information about lichen sclerosus and vulval cancer, plus links to support groups and awareness pages on social media. The website was set up to help those suffering from lichen sclerosus and to raise awareness of the condition.
  • The Lichen Sclerosus Guide is an award-winning resource for people living with vulval lichen sclerosus (LS). It was co-produced by patients, specialist health professionals, and researchers. It contains evidence-based information as well as useful practical tips based on patient and health professional experiences. It includes tools such as template treatment plans to aid your consultations, a symptoms checklist, and videos to explain LS, how to self-check, and how to use treatment.
  • for sufferers of PCOS or polycystic ovary syndrome, the Verity self-help group