Workstream 2

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.

EAC & Vice-EAC

Expertise Area Coordinator: John Heesakkers

Vice-Expertise Area Coordinator: Michel Wyndaele

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.

EAC & Vice-EAC

Expertise Area Coordinator: (position open)

Vice-Expertise Area Coordinator: (position open)

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.

EAC & Vice-EAC

Expertise Area Coordinator: Gunter de Win

Vice-Expertise Area Coordinator: (position open)

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.

EAC & Vice-EAC

Expertise Area Coordinator: (position open)

Vice-Expertise Area Coordinator: (position open)

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.

EAC & Vice-EAC

Expertise Area Coordinator: Mariangela Mancini

Vice-Expertise Area Coordinator: Alessandro Giammò

Patient Journey

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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.

EAC & Vice-EAC

Expertise Area Coordinator: Laetitia de Kort

Vice-Expertise Area Coordinator: (position open)

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. The surgery can help to create a more congruent physical appearance, improve sexual function, and improve mental health and well-being.

EAC & Vice-EAC

Expertise Area Coordinator: Armin Soave

Vice-Expertise Area Coordinator: Timo Ole Nieder