Diagnosis and treatment of interstitial cystitis (IC)

Diagnosis and treatment of interstitial cystitis (IC)

Stinging pelvic pain and urination with up to 60 toilets over day and night: The predominantly female patients with an interstitial cystitis (IC) are under enormous suffering; often the disease leads to social isolation and disability. In addition, the disease is still relatively unknown and difficult to diagnose the chronic inflammation of the bladder wall until today.

On average, it takes nine years to diagnose; in half of the patients more than 20 visits to the doctor's office are necessary until their distressing suffering gets a name. The German Society for Urology (DGU) and the Association for Interstitial Cystitis, ICA-Deutschland eV (ICA), now have a decisive role to play in the development of the first German guideline on "Diagnosis and Treatment of Interstitial Cystitis (IC / BPS)" Step towards better care for those affected. The consultation version of the guideline, which was produced under the auspices of the DGU, will be published online shortly on the homepage of the Association of the Scientific Medical Societies e.V. (AWMF).

The diagnosis "interstitial cystitis" is made after many years of medical odyssey finally 99 percent by urologists. "With the interdisciplinary guideline, we now have the opportunity to inform about the specialist areas, to sharpen the sensitivity of the physicians for the IC in broad terms and to optimize the quality of care," says DGU spokesman Prof. Dr. med. Christian Wülfing. The guideline's addressees are mainly doctors and practitioners of urology, gynecology, general medicine, pain therapy and physiotherapy. As a guideline coordinator, Prof. Dr. med. med. Dr. phil. Thomas Bschleipfer made a merit for the professional society.

"After decades of efforts to set standards for the diagnosis and treatment of rare diseases, a further key milestone has been reached with a quality S2k guideline," says Bärbel Mündner-Hensen. She is a founding member and national chairman of ICA Germany, which celebrates its 25th anniversary this year. The Friends of the Society is involved in scientific and political matters nationally and internationally for the interests of IC patients and has initiated the guidelines project at the DGU.

As early as 2017, the ICA, which works together with renowned medical doctors on its medical advisory board, achieved two important goals: for example, the non-profit organization developed a catalog of requirements for the certification of designated treatment centers. In September 2017, the continence and pelvic floor center at the Schwarzwald-Baar-Klinikum was honored as Europe's first competence center. In the meantime, the Marien Hospital in Herne and the Städtische Klinikum Lüneburg have successfully passed the accreditation procedure; further certifications are pending.

For a reimbursable medication, the ICA had long struggled. With the approval of the drug sodium pentosan polysulfate for the treatment of IC by the European Medicines Agency (EMA) since October 2017, a drug is available for the first time, which is paid by the health insurance companies.

Cervical interstitial cystitis is not curable. Multimodal therapies, i.a. Drug therapies, bladder installations and pain therapy can only prevent the progression of the disease and alleviate symptoms.

Causes of IC, which is associated with comorbidities such as muscle and joint pain, migraine, depressive moods, allergies, colon and stomach problems, are not well known. The disease is described as an immune and barrier defect in the tissue of the urinary tract, in particular the protective so-called GAG layer of the urinary bladder, whereby the bladder wall is increasingly exposed to damaging constituents of the urine and an ongoing inflammatory process can be triggered. It is estimated that 18 out of every 100,000 women are affected in Europe, and the number of unreported cases is very high. "The successful implementation of the guideline can counteract this," says DGU spokesman Prof. Wülfing.

The need for research remains high. "In order to better explore therapeutic options, we need a scientific consensus as the next step on the exact differentiation of the various forms of the disease, which allows a more accurate patient selection in future studies," said the ICA Chair Bärbel Mündner-Hensen, which already In 2013, she was honored with the Federal Cross of Merit on Ribbon for her commitment to IC research, education, continuing medical education and IC self-help. Currently running a clinical drug study, which u.a. from DGU Guidelines Coordinator Prof. Dr. med. med. Dr. phil. Thomas Bschleipfer is headed.