Diseases That Mimic Interstitial Cystitis

Dr. Rajesh Taneja on Indian diet for Interstitial Cystitis

Q&A Session with Pelvic Floor Therapist Dr. Bhavti Soni

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Webinar with Dr. Aparna Hegde, Urogynocologist. Mumbai

Q&A with IC Patients and Pain Specialist Dr. Mahesh Menon

Webinar for IC Patients

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ESSIC 2019- Amsterdam

Excerpts from the minutes of the meeting (MOM) of the annual ESSIC meeting of 2019. Thanks to International Painful Bladder Foundation for sharing the minutes. To read the entire MOM please visit the official ESSIC website. 

The ESSIC 2019 annual scientific meeting was held at the DoubleTree by Hilton Hotel in Amsterdam from 5th-7th December. It was chaired by Dick Janssen MD (NL) and attended by some 170 participants from no fewer than 33 countries around the world including doctors, nurses, physiotherapists, and patient advocates and all these groups were well represented among the speakers.

Patient Advocates

A successful innovation this year was the organization of 3 interactive workshops for physiotherapists, nurses, and the new ESSIC committees. This 2019 meeting was remarkable for its great atmosphere, high level of interaction and particularly the tremendous enthusiasm from everyone. It was encouraging to see younger generations of health professionals, including nurses and physiotherapists, participating to the full. The meeting was also attended by far more patient advocates than ever before, many of whom had traveled long distances, including from South Africa, Israel, Canada, the USA, and India as well as many different European countries. Some are new to the field, therefore, ESSIC 19 provided perfect learning and networking opportunity. In addition, the Dutch IC patient association (ICP) had taken the opportunity to host and organize an international patient advocacy lunch and meeting directly after the ESSIC meeting finished on Saturday 7 December. This was a huge success and was also attended by a number of medical professionals who support patient organizations in medical advisory boards. Hopefully, this will ultimately lead to some kind of global alliance. Many thanks are due to the ICP and especially Mathilde Scholtes for their hard work in organizing this and to Dick Janssen for kindly chairing the meeting.

The theme of the ESSIC 2019 meeting was “the right multidisciplinary treatment for the individual patient”. The meeting also emphasized the need for appropriate phenotyping/subtyping with many speakers recommending that Hunner lesion should be split off from non-lesion disease or, at the very least, that lesion patients should not be combined with non-lesion patients in drug trials or studies.

Speaking on non-lesion IC/BPS, ESSIC President Jean-Jacques Wyndaele MD, (Belgium) emphasized the absolute importance of cystoscopy to differentiate between lesion and non-lesion. In his overview of treatment possibilities, he noted that while GAG replenishment to reduce leakage due to epithelial layer damage is an important aspect of treatment for many patients. However, there are patients who do not respond to GAG therapy and research is needed into these non-responders to see what is different from their bladder. Do these patients have different bladder pain syndrome with a different cause? Although the AUA guideline states that long-term antibiotics should not be used, it was suggested that there may be patients who really need these.

Rajesh Taneja MD (India) gave an overview of experiences from India which has a population of a breathtaking 1,300,000,000, with 3,000 urologists and 40,000 gynecologists. India has produced an Indian diet book for Interstitial Cystitis (authors Neelanjana Singh and Rajesh Taneja, published by Avichal Publishing Company).

The second day of the conference opened with sessions revolving around a multidisciplinary approach. Robert Moldwin MD (USA) looked at the role of the urologist, emphasizing that the IC/BPS (UCPPS) the population is large and clinically complex. While urologists and urogynecologists may remain the central caregivers, multifaceted/multidisciplinary care is needed but rarely applied.

Jane Meijlink

Jane Meijlink discussed comorbidities/associated disorders noting that many patients with IC/BPS also have one or even multiple comorbid conditions, including potentially very disabling systemic autoimmune diseases. Comorbid conditions add greatly to the suffering of the IC/BPS patient and make treatment very complex, particularly in the case of systemic diseases. A multidisciplinary approach is therefore essential. Associated disorders include allergy, irritable bowel syndrome, sensitive skin, vulvodynia, fibromyalgia, chronic fatigue syndrome, migraine, asthma, Crohn’s disease/ulcerative colitis, rheumatoid arthritis, systemic lupus erythematosus, and Sjögren’s syndrome. Adverse reactions (intolerance) can occur without the involvement of the immune system. Intolerance mainly occurs to food, drugs, and chemicals. Non-allergic intolerance (particularly to drugs) may be occurring very frequently in our IC/BPS patients, but no data are available on the prevalence in IC/BPS.  Multiple drug intolerance can cause great problems with treatment.

Gastroenterologist H. de Schepper MD (Belgium) looked at IBS and bowel management, with an emphasis on diet, while M.C. Gori MD (Italy) spoke about at the role of the psychologist and cognitive behavioral therapy. Kristene Whitmore MD (USA) examined the role of the sexologist and sexual dysfunction in IC/BPS, looking at both superficial (introital) and deep dyspareunia as well as vaginismus which is a recurrent or persistent spasm of vaginal musculature that interferes with vaginal penetration.

Physiotherapist Fetske Hogen Esch (NL) stressed that well-trained pelvic physiotherapists should be part of a multidisciplinary approach in the diagnosis and treatment of patients with IC/BPS. She considered that general knowledge of the peripheral nerves in the pelvic area is poor, while musculoskeletal causes of IC/BPS have not always been taken into account. 

Jane Meijlink, IPBF, spoke on “An urgent case for sensory urgency”. Officially, IC/BPS patients no longer had urgency, with far-reaching negative consequences for both patients and research since it led urologists and pharma to believe that IC/BPS patients do not suffer from urgency. Attention was consequently exclusively focused on pain. These problems could be resolved by reintroducing the former term “sensory urgency”: a compelling need to urinate due to intolerable pain or other unpleasant hypersensitive sensation.

Balaka Basu, Founder of Interstitial Cystitis India (ICI), spoke on “Social Media – An Indian Perspective”, explaining how social media platforms proved to be a boon in creating and spreading awareness of IC/BPS throughout the vast continent of India and surrounding countries. This has been helped by the availability of cheap internet across India, wide usage of smart phones by Indians, popularity of social media platforms and last but not least a huge increase in the literacy rate in India. Social media is an excellent way to reach out to patients and the general public, to raise awareness, she explained. It enables you to reach millions of people very rapidly and is very cost effective. Social media platforms such as Skype or Zoom meetings have largely replaced traditional forms of support group meetings since travelling to a meeting is difficult for health reasons, distance, cost etc. Balaka explained that a call centre to help patients proved impossible due to logistical and financial constraints. Consequently, social media platforms such as WhatsApp and Facebook groups became effective instead. This can provide a listening ear round the clock. They use YouTube to focus on connecting experts to the patients, with interviews of experts in the field of IC/BPS and comorbidities uploaded to YouTube. IC India has found that social media usage helps spread information faster, helps people connect better, does more jobs effectively with less cost and effort and makes the group go global rather than stay local! However, Balaka stressed that traditional groups and meetings should not be replaced since many patients still feel comfortable with them and they help people to get to know each other personally. Online groups can be added along with the traditional groups so as to reach out to more patients and the general public. However, she emphasized that managing social media is a huge task and they are continually having to learn new techniques so as to be able to do it themselves. 

Gail (Canada), Vicki (USA), Maureen (SA), Balaka (India)

Gail Benshabat gave a presentation about IC Support Canada, a new national support group for IC/BPS patients throughout Canada, founded by Gail Benshabat and Marnie Shainhouse. Patients face many challenges in Canada: finding a doctor, getting a diagnosis and until now support networks in Canada have been very limited. There is a lack of research and no data on how many people have the condition in Canada. The group is active on a Facebook Forum where group members share experiences, resources, and support. Current activities include fundraising, communication, and information, with webinars, interviews, podcasts, live events, and a brochure. They have many new initiatives in the pipeline.

Mathilde Scholtes

Mathilde Scholtes, Board Member ICP, the Dutch patient support group, presented the preliminary results of a patient survey aimed at better identifying patients’ needs, improving awareness amongst clinicians, achieving more patient-centered clinical management and improving the public lobbying function. There were 234 respondents and results showed that IC/BPS has a severe impact on daily life, the highest impairment was related to sleep, and a poor outcome of general clinical care. It was evident that more attention needs to be paid to the treatment of sleep disorders, social problems, and work-related issues.

The last part of the meeting was devoted to three parallel workshops and innovation at this ESSIC meeting.

WORKSHOP 1 revolved around presentations from 5 new ESSIC Committees: Guideline Committee: chaired by Philip Hanno, MD, (USA) who said we need a new international guideline sensitive to different healthcare systems and sensibilities. Classification & Diagnostic Committee: chaired by Mauro Cervigni, MD, (Italy), will work closely with the Guideline committee. Education Committee: chaired by Rajesh Taneja, MD, (India). One focus will be to train urologists and urogynaecologists in IC/BPS and Hunner lesion. Scientific Committee: chaired by Jean-Jacques Wyndaele, MD, (Belgium). Patient Advocacy Committee: co-chaired by Loredana Nasta (Italy) and Vicki Ratner MD (USA) When outlining plans for the Patient Advocacy Committee, Vicki Ratner looked at issues such as finding patient advocates, funding the new Patient Advocacy Committee, publicity, and also took a few minutes to mention the issue of now several reports of pigmentary maculopathy seen in the longterm use of oral pentosan polysulphate sodium.

WORKSHOP 2: PHYSIOTHERAPY was chaired by Jörgen Quaghebeur, PhD, (Belgium) who explained that the pelvic floor has a complex innervation. Marijke Slieker-ten Hove, PhD, (NL) looked at relaxation therapy in patients with bladder pain symptoms, noting that when making the diagnosis both physical and mental aspects are very important. Relaxation therapies are an important instrument in the treatment: mindfulness-based stress reduction. However, existing studies were not able to define the best approach for the treatment of BPS/IC. The lack of standardized treatment may be related to the diversity of interventions used; therefore, further studies with better methodological quality are needed. Joelle Roenen (NL) discussed electrostimulation, emphasizing that a multidisciplinary approach is needed treating patients with chronic pelvic pain. Alexandra Vermandel, PhD, (Belgium) talked about genito pelvic pain/ penetration disorder (GPPPD), noting that extreme discomfort or pain while experiencing or attempting intercourse can reduce sexual desire, disrupt relationships, and leave a woman feeling less feminine. It also can lead to frustration and unhappiness of the partner. Treatment includes education, pelvic floor physiotherapy, medical interventions and surgical interventions, though sexual function may be optimized through a multifaceted approach. The disorder involves difficulty having intercourse and feeling significant pain upon penetration. GPPPD is often correlated with pelvic muscle tension. Pelvic floor therapists are the optimal provider to treat this condition.

Dr. Lovasz

WORKSHOP 3 was a hands-on nursing workshop chaired by Sandor Lovasz, MD, (Hungary) and Ria Pothoven, nurse consultant (NL), looking at the role of the nurse specializing in IC/BPS, bladder instillations and preparing the products, and catheterization versus the use of the new catheter-replacing adapter from Hungary which is proving popular with patients. Ria Pothoven looked at the role of Percutaneous Tibial NeuroStimulation (PTNS) and TENS. This session was followed by a lively summing up by Dick Janssen with a number of take-home messages. IC/BPS patients should be treated with a multidisciplinary team to provide the best care, also making use of anaesthesiologist/pain specialist, gastroenterologist, gynecologist, and rheumatologist. While there is heterogeneity in the disease, there is also heterogeneity between guidelines. Basic science gives us interesting clues about GAGs, mast cells, and novel neuromodulation techniques. There is more than a standard RCT in clinical research. We should explore and adopt sensible and feasible research methodologies to try to increase the number of successful trials. It is important to incorporate patients and their organizations in research and listen to them to improve our healthcare. Training of clinicians is needed to produce more IC/BPS experts.