Patients with IC/BPS (interstitial cystitis/bladder pain syndrome) are found all over the world. The majority of these patients suffers from symptoms like high urinary frequency and urgency, pain and pressure in the lower abdominal, urethral, or vaginal area (in women) or testicular, scrotal, and/or perineal area as well as a painful ejaculation (in men).
The European approach to the treatment of IC/BPS is very different from America not only in their use of medications, but also in their assessment and empowerment (or lack thereof) of the chronically ill patient. The American Urology Association has a six-step treatment protocol for IC, which places self-help strategies (i.e. diet modification, etc.) as the foundation of care (i.e. Step One) and suggests a thoughtful treatment approach based upon patient safety and the risk of adverse event. In contrast, the European approach centers around the use of medication and surgery while failing to recognize simple, daily self-help strategies that give patients some control over their IC symptoms.
Common European Treatments
In Europe, e.g. in the Netherlands and Belgium, IC therapy consists of the following treatments:
- Oral medications: pentosan polysulfate sodium (Elmiron), tricyclic antidepressants (Amitriptyline), anti-epileptic medications (Neurontin, Gabarone), histamine blockers, antimuscarinics, analgesics (Aspirin, ibuprofen, phenazopyridine)).
- Bladder hydrodistention
- Bladder instillations: dimethylsulfoxide (DMSO, RIMSO-50), heparin, lidocaine, sodium hyaluronate, PPS and hydrocortisone).
- Botox
- Surgical procedures: neuromodulation, laser therapy and urinary diversion, orthotopic diversion, augmentation cystoplasty and total cystectomy.
- TENS (transcutaneous, non-surgical neuromodulation).
- Physical therapy for pelvic pain.
In sharp contrast to the American Urological Association’s “Step One” treatment recommendations, the European approach does not support key self-help interventions. Their quick answer to IC symptoms is to prescribe a medication and/or suggest removing the bladder.
Research studies have proven that diet modification plays an indispensable role in reducing IC symptoms and in increasing the quality of life of chronically ill patients. Yet few European doctors advise patients to explore diet modification and better nutritional practices.
Similarly, periods of high stress have been shown to increase the incidence of IC flares. The AUA guidelines strongly encourage that patients get skill training in stress and anxiety management. The European urology community rarely asks about stress levels.
Studies have also shown that urology patients who lack support, especially from family members, have a poorer long-term outcome. The AUA “Step One” recommendations strongly encourage patient support (i.e. participating in a support group, working with a professional, etc.) for those moments when IC affects their employment, family life, relationships and lifestyle. In Europe, patients are often left to suffer in silence, at home alone.
Food supplementation also has key role. The AUA Guidelines encourage patients to try OTC supplementation in their Step One options prior to trying more conventional therapies due to their lower risk in side effects. The European urology community has not welcomed to any great degree the use of supplements, which can improve not only bladder but also overall health.
My approach
Coping with a chronic condition requires a balanced and holistic approach to treatment and self-care. As an IC specialized nutritionist & therapist in the Netherlands, I believe that almost every chronic condition, including IC, has underlying factors, which contribute to patient suffering, such as chronic low-grade non-bacterial inflammation, hormonal imbalances and/or nutritional depletion. These are also important to address.
When I work with these patients, I first evaluate their health, dietary pattern, lifestyle and mindset. After that, I set up a personal health plan for them, which consists of a comprehensive advice about nutrition, dietary supplements, exercise and mental health. Next to that, I provide all my clients with supportive coaching on a regular basis. These coaching sessions often take place via Skype of other online services so that clients do not have to undergo the burden of travelling. Online coaching sessions also make it possible to treat clients that live abroad.
One patient’s experience
In 2010 a 32-year old male suffering from IC since he was 26, almost lost hope after hearing his urologist say: “Sorry sir, but the only thing I can advise you is a total cystectomy (bladder removal)…” According to this doctor and his fellow colleagues, bladder removal was the only ‘solution’, because the various medications, bladder instillations, hydro distention, etc. did not work. In fact, after these treatments the patient’s symptoms only got worse. There had been never spoken one word about healthy lifestyle and nutrition.
This patient chose a different path. He quit those medications that were making him worse and asked me to create a personal health plan for him, which consisted of a special diet, supplements, exercise and mental support. It took him five hard years with a lot of perseverance and today, in 2016, this man is completely free of IC related symptoms and stronger and healthier as he has ever been.
In hindsight, he came to realize that he had been filling his body with junk food instead of nourishing his body with unprocessed food and supplements. He also acknowledged that drinking soda, eating junk food and smoking as well as a lot of mental stress and the use of several types of medication (including antidepressants and painkillers) would obstruct his body’s natural healing capacity.
After this revelation, he started and continued a 100% natural lifestyle, which consisted of ‘clean eating’, taking supplements and daily mental as well as physical exercise.
I would strongly recommend all IC patients to:
- Explore good nutrition (preferably organic);
- Start a 100% natural lifestyle (including natural cosmetics, detergents, etc.)
- Do plenty of physical exercise;
- Take supplements with essential vitamins, minerals, antioxidants and other nourishing compounds
- Ask for professional mental support.
It’s Time To Change Protocols
Is the European Urology community treatment IC patients friendly? Is their approached balanced and focused on long term outcomes? I think they could be better! We must expand the knowledge of urology practitioners in Europe to embrace those simple, yet effective self-help and holistic strategies that can make a profound difference in the life of patients. These strategies are often inexpensive, non-invasive and can improve the health and daily life of many if not most patients.
About the author
Melissa Albers (Bsc in nutrition) has specialized herself in pathology, metabolic conditions, psychiatry & medication and treating patients with interstitial cystitis (IC) / bladder pain syndrome. Her aim is to help chronically ill patients (including patients with IC) by working on raising awareness about their burden of disease. Next to that, she provides patients with (online) nutritional & lifestyle advice as well as mental coaching. Find out more on: http://www.sustainfresh.com
