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When Bladder Treatments Don’t Work For IC/BPS: It’s Time For A New Approach

Clinging To Old Treatments For IC/BPS Could Hold You Back

If you had been diagnosed with IC/BPS forty years ago, odds are you would have been prescribed antibiotics, given urethral dilations and/or referred to a psychiatrist under the mistaken assumption that IC was all in your heads. Twenty years ago, that same patient might have been given harsh bladder instillations (i.e. chlorpactin, silver nitrate or DMSO) and/or Elmiron (approved in 1996) . Ten years ago, they might have been given the IC diet, prescribed overactive bladder medications and perhaps given a trial of Interstim. But did they work? Did they really work? The answer, of course, is no, not for everyone. Even Elmiron & DMSO, the only FDA approved treatments for IC, have conflicting research studies and success rates. Why do some patients not respond to treatments?

The answer can be found in subtyping proposals now being debated and discussed by a variety of urology clinicians and researchers. The UPOINT/INPUT(1) subtyping system and Dr. Christopher Payne’s five subtypes(2) help us to understand the nuance and clear variations found throughout the IC patient population. Subtyping focuses first on finding the specific pain generators (lesions, bladder, muscle, nerves, etc.) in patients so that the most effective treatments can be tried for their most unique case. If a patient is not getting better, revisiting the diagnosis and subtype is essential.

Hunner’s Lesions

The first clear subtype of IC/BPS is Hunner’s lesions. Lesions are now considered a separate and distinct disease process with biopsies routinely finding profound inflammation in the bladder wall. While these patients struggle with the most intense symptoms, the AUA suggested treatments (cauterization, laser or steroid injection) can cause remarkable improvement in pain, frequency and urgency. The new medical device LiRIS is also showing success at reducing the quantity and size of lesions, in some cases resolving them completely.(3) Traditional bladder treatments (i.e. Elmiron, DMSO) are not considered effective however diet modification is essential.

Bladder Phenotype

The Bladder Phenotype includes those patients who struggle with a bladder wall dysfunction/trauma, such as that caused by chemotherapy, chemical exposure, excessive irritation from drinking coffees and other irritants. The classic symptom is pain or discomfort as the bladder fills with urine that is relieved by urination. Assuming that a UTI has been ruled out, treatments will focus on calming and soothing the bladder wall with diet modification therapies, urinary analgesics/pain relievers (i.e Azo Urinary Pain Relief tablets, Pyridium, etc.), bladder coatings and instillations. Botox and/or neuromodulation may be helpful in more severe patients. This is the subtype that responds best to traditional bladder therapies. If simpler medications aren’t working, it may be time to explore more aggressive treatments in Step Four & Five.

Myofascial Phenotype

The Myofascial Phenotype includes those patients whose symptoms are the result of tight, injured and/or dysfunctional pelvic floor muscles and/or fascia. This can occur after pelvic floor trauma, such as childbirth, pelvic injury, accidents, a history of repeated falls (i.e. ice skating, gymnastics, football). These patients may also have other orthopedic issues. The goal of therapy is to relax contracted, tight muscles and restore normal function and blood flow. Suggested treatments include stretching, yoga, myofascial physical therapy, muscle relaxants, pain management, trigger point work and perhaps botox injection into muscle. Patients with PFD respond extremely well to pelvic floor physical therapy, muscle relaxation, perhaps trigger point or botox injections into the muscles. Bladder treatments might provide minor comfort but will not get to the root of the problem.

Pudendal Neuropathy Phenotype

Patients within the Pudendal Neuropathy Phenotype struggle with nerve dysfunction and/or entrapment. What makes these patients unique is that their symptoms are neurological in nature, including sharp, electrical type pain in the pelvis and/or urinary tract when sitting down. Some of these patients may struggle with PGAD, a painful arousal sensation due to compression or dysfunction of the pudendal nerve. Others may have been born with a birth defect that rerouted a nerve next to a bony structure that causes it to be compressed when sitting. Therapy is focused not only on calming nerves but finding the source of the nerve dysfunction through nerve blocks and, if possible, relief of any entrapments found. These patients are instructed to stop behaviors which result in pain, such as sitting for long periods of time. They may do yoga and or physical therapy to help relax tight muscles. Medications to calm nerves and control pain are important. If these aren’t successful, then nerve stimulation and/or surgical release of the entrapment may be necessary.

Central Sensitization & Systemic Pain Phenotype

The Central Sensitization/Systemic Pain Phenotype includes patients who struggle with other pain conditions such as IBS, fibromyalgia, vulvodynia, headache and/or allergies. Anxiety, depression and catastrophizing are common. These patients have signs of systemic (body wide) nerve sensitization, including sensitive skin, drug sensitivity, food sensitivity, an extremely sensitive sense of smell, chemical sensitivity and, of course, a sensitive bladder and bowel. They may also suffer with anxiety and depression. Treatment is focused on treating central sensitization, calming the nervous system and addressing and to help reduce/control any psychological symptoms. So, would a bladder treatment address a systemic condition? Because these patients also struggle with bladder sensitivity, then the bladder phenotype self-help recommendations (i.e. diet modification) & treatments are also important.

Conclusion

On December 7, 2017, the FDA’s Bone, Reproductive and Urologic Drugs Advisory Committee is holding a meeting where they will be discussing the revision of criteria used in interstitial cystitis studies. We can no longer blur the lines in patient recruitment for research studies. Clinical trials must sort patients more effectively based upon their subtype to ensure that new therapies are matched with the correct patient group.

Similarly, urologists, urogynecologists and primary care providers must step away from the “IC is a bladder disease” and “bladder treatments work for everyone” model. They must first identify the drivers of pain before suggesting treatments. Subtyping does this. is the most promising breakthrough we’ve had in decades and we need to use them.

Lastly, patients must also understand that muscles and nerves can also trigger urinary frequency, urgency, pressure and/or pain. If you’ve been clinging to “my bladder hurts” whenever you flare and are using antibiotics or bladder wall treatments yet have not improved substantially, then it’s worth learning about your unique case of bladder pain. It’s time to look beyond the bladder.

References:

(1) Crane A, et al. Improving The Utility of Clinical Phenotyping in IC/PBS: From UPOINT to INPUT. JUROL April 2017 Volume 197, Issue 4, Supplement, Pages e386–e387
(2) Payne CK. BPS/IC 2017: The Emperor Has No Clothes. 2017 AUA Annual Meeting Presentation. May 2017. Boston CA
(3) Peters K, et al. Safety, Tolerability and Preliminary Efficacy of LiRIS 400mg in Women With Ulcerative IC. AUA 2016 Abstract MP72-616

By |2017-11-22T23:58:26+00:00November 22nd, 2017|Flares, Front Page Feed, Jill's Journal, Pain Care, Pelvic Floor Dysfunction, Pelvic Pain, Women's Health|Comments Off on When Bladder Treatments Don’t Work For IC/BPS: It’s Time For A New Approach

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.