Workstream 2 focuses on functional urogenital conditions requiring highly specialised surgery. The Expertise Areas (EAs) covered by Workstream 2 are below. Complicated and complex pelvic floor disorders refer to a group of conditions affecting the muscles, ligaments, and nerves that support the pelvic organs, such as the bladder, uterus, and rectum. These conditions can cause a variety of symptoms, such as pelvic pain, urinary and fecal incontinence, and sexual dysfunction. Complicated pelvic floor disorders typically involve additional medical complications, such as a history of pelvic surgery or radiation therapy, pelvic trauma, or comorbid medical conditions, which can complicate diagnosis and treatment. Complex pelvic floor disorders refer to cases that are particularly difficult to diagnose or treat, often due to the presence of multiple coexisting conditions or a lack of clear understanding of the underlying causes. Treatment for complicated and complex pelvic floor disorders may involve a multidisciplinary approach, including medication, physical therapy, behavioral therapy, and surgery, tailored to the individual’s specific condition and needs. Whilst the majority of primary conditions associated with pelvic floor dysfunction will be managed by gynaecologists and urologists with an interest in female urology and urogynaecology more complex cases should be managed by a core multidisciplinary team should consist of a urogynaecologist, female urologist, colorectal surgeon, nurse specialist and pelvic floor physiotherapist. Additional members may include neurologists, geriatricians, pharmacists and medical physicists. EAU Non-Neurogenic Female LUTS Guidelines: These guidelines aim to provide sensible and practical evidence-based guidance on the clinical problems associated with female lower urinary tract symptoms (LUTS), and treatments including surgery. EAU Non-Neurogenic Male LUTS Guidelines. These guidelines offer practical evidence-based guidance on the assessment and treatment of men aged 40 years or older with various non-neurogenic benign forms of lower urinary tract symptoms (LUTS). EAU Overactive Bladder Syndrome Patient Information. The European Association of Urology (EAU) Patient Office provides reliable patient information on urology conditions and urology health. Incontinence. Disease InfoSearch page. Rare diseases and conditions affecting the female urethra refer to a group of uncommon and often poorly understood medical conditions that affect the structure or function of the female urethra, the tube that carries urine from the bladder to the outside of the body. These conditions can range from congenital anomalies, such as urethral duplication or urethral diverticulum, to acquired conditions, such as urethral stricture or urethral cancer. Symptoms of rare diseases and conditions affecting the female urethra can include urinary incontinence, pain or discomfort during urination, recurrent urinary tract infections, or blood in the urine. Diagnosis may involve a combination of physical exams, imaging studies, and diagnostic procedures, such as cystoscopy or urodynamic testing. Treatment for rare diseases and conditions affecting the female urethra may involve medical management, such as antibiotics or hormone therapy, or surgical interventions, such as urethral reconstruction, depending on the specific condition and the individual’s needs. EAU Urethral Strictures Guidelines. The European Association of Urology (EAU) Urethral Strictures Guidelines aim to provide a comprehensive overview of urethral strictures in male, female, and transgender patients. Urethral reconstruction in rare diseases and conditions refers to surgical procedures that aim to repair or reconstruct the urethra in cases of congenital anomalies or acquired conditions that affect its structure or function. These conditions can include rare diseases such as urethral duplication or cloacal anomalies, or acquired conditions such as urethral stricture or urethral cancer. Urethral reconstruction may involve various techniques, such as urethral dilation, urethral stent placement, or open surgical procedures such as urethroplasty, depending on the location and severity of the urethral abnormality. In some cases, tissue grafts or flaps may be used to reconstruct the urethra, and in other cases, the urethra may need to be completely rerouted or replaced. EAU Urethral Strictures Guidelines. The European Association of Urology (EAU) Urethral Strictures Guidelines aim to provide a comprehensive overview of urethral strictures in male, female, and transgender patients. Retroperitoneal diseases and conditions refer to those that affect the organs and structures located behind the peritoneum, which is the membrane that lines the abdominal cavity. Rare retroperitoneal diseases and conditions are those that are not commonly found in this area and may affect various structures, such as blood vessels, nerves, lymph nodes, or connective tissues. Retroperitoneal fibrosis. Disease InfoSearch page and Genetic and Rare Diseases Information Center page. Retroperitoneal Fibrosis World Support. Offers both a warm and comforting welcome and an unrivalled learning experience to build self-awareness of RF. They welcome all patients, caregivers, family, friends, and interested medical professionals. This forum is for each member to offer others moral support, friendship, and opinions and advice based on our personal experiences with RF. Vesicoureteral reflux. Disease InfoSearch page. Interstitial cystitis (IC) (also known as Bladder Pain Syndrome or Painful Bladder Syndrome) is a chronic condition that causes pain and discomfort in the bladder and pelvic region. The exact cause of IC is unknown, but it is characterised by symptoms such as frequent and urgent urination, pressure or pain in the bladder, and discomfort in the pelvic region. It can also lead to bladder dysfunction and decreased quality of life. There is no cure for IC, but various treatments, such as medication, bladder training, and physical therapy, can help manage its symptoms. Associazione Italiana Cisitite Interstiziale (AICI Onlus). EAU Chronic Pelvic Pain Guidelines. This guideline plays an important role in the process of consolidation and improvement of care for patients with pelvic pain and associated lower abdominal pain. EAU Chronic Pelvic Pain Syndrome Patient Information. The European Association of Urology (EAU) Patient Office provides reliable patient information on urology conditions and urology health. International Painful Bladder Foundation (IPBF). International Society for the Study of Bladder Pain Syndrome (ESSIC). Interstitial Cystitis. Disease InfoSearch page and Genetic and Rare Diseases Information Center page. This Expertise Area (EA) relates to patients transitioning from paediatric care under Workstream 1: Rare congenital uro-recto-genital anomalies once they reach adulthood. Adult urogenital reconstructive surgery is a specialised surgical subspecialty that focuses on restoring function and normal anatomy to the urinary tract and reproductive system of adult patients who have congenital abnormalities, acquired conditions, or injuries that affect these systems. This type of surgery involves complex procedures to repair, reconstruct, or replace parts of the urinary and genital organs, including the kidneys, ureters, bladder, urethra, prostate, and genitalia. The goal of adult urogenital reconstructive surgery is to improve patients’ quality of life by addressing problems such as urinary incontinence, bladder dysfunction, urethral strictures, genital malformations, and sexual dysfunction. Nephroblastoma (Wilms’ tumor). Disease InfoSearch page and Genetic and Rare Diseases Information Center page. Neuroblastoma. Disease InfoSearch page and Genetic and Rare Diseases Information Center page. Urinary incontinence may occur seen in transgender individuals after gender affirming surgery. Urogenital/urological surgery for transgender patients is a specialized surgical subspecialty that focuses on addressing urinary and reproductive system-related concerns of transgender individuals.. This type of surgery can include various procedures such as vaginoplasty, phalloplasty, metoidioplasty, orchiectomy, penectomy, and urethroplasty. The goal of urogenital/urological surgery for transgender patients is to alleviate gender dysphoria, a condition where individuals experience distress due to a mismatch between their gender identity and their assigned sex at birth.Workstream 2: Functional urogenital conditions requiring highly specialised surgery
EA 2.1 Complicated & complex pelvic floor disorders
ORPHAcodes & ICD-10 Codes
EAC & Vice-EAC
Additional Resources
EA 2.2 Rare diseases & conditions affecting the female urethra
EAC & Vice-EAC
Additional Resources
EA 2.3 Urethral reconstruction in rare diseases & conditions
EAC & Vice-EAC
Additional Resources
EA 2.4 Rare retroperitoneal diseases & conditions
EAC & Vice-EAC
Additional Resources
EA 2.5 Interstitial Cystitis
EAC & Vice-EAC
ePAG Representatives
Additional Resources
EA 2.6 Adult urogenital reconstructive surgery (transition from WS1)
ORPHAcodes & ICD-10 Codes
See Workstream 1 Expertise Areas
ORPHAcode 654
ORPHAcodes 635
ORPHAcode 780,
ORPHAcode 206492,
ORPHAcode 213802,
ORPHAcode 213615
ICD-10 Code C49.9
ICD-10 Code C52
ICD-10 Codes C53, C53.1, C53.8
ICD-10 Code C54.2
ICD-10 Code C64
ICD-10 Code C74.9EAC & Vice-EAC
ePAG Representative
Additional Resources
EA 2.7 Surgery for transgender patients
ORPHAcodes & ICD-10 Codes
ICD-10 Code F64EAC & Vice-EAC
Workstream 2
