Interstitial cystitis (IC) was first described in medical literature in the early 19th century1 and it is still evolving in its identity today. From being recognized as IC to now “painful bladder syndrome”(PBS) or “bladder pain syndrome,” there is movement toward a more systemic definition.2 This evolution toward systems-based whole person treatment is certainly an overdue, because it has left too many people suffering without help due to myopic thinking about what IC/BPS impacts.
IC, or PBS more accurately identified, is a chronic (symptoms that last more than 6 weeks), non-infectious condition that can be driven by an inflammatory process.3 Though still not well understood, here are the conditions that must be ruled out when considering IC/PBS, or perhaps more aptly stated - here are the conditions that IC can be misdiagnosed as4:
- Urinary tract infection - people are often put on antibiotics in absence of a positive urine culture (a quick dipstick in office test is not accurate), which can actually make the condition worse if no active infection is present
- Urgency/frequency syndrome
- Urge incontinence
- Sexually transmitted diseases
- Kidney or bladder stones
- In mean, chronic prostatitis
In my practice, I am also looking for other musculoskeletal issues that can be related to or cause bladder and pelvic pain, like abdominal adhesions from scars or previous surgeries like myomectomy, cesarean section, or hysterectomy, as well as hip labral tears or femoracetabular impingement, respiratory or vocal diaphragm myofascial restrictions and/or or vagal tone problems.
The National Institutes of Health created diagnostic criteria for IC/PBS in the late 1980’s5, which include:
- bladder and pelvic pain
- urinary urgency and frequency
- diminished bladder capacity
- identification of Hunner’s ulcers (only affects about 10% of all cases)
Though IC/PBS can be difficult to identify, as it is mostly a diagnosis of exclusion, here are the most common signs and symptoms:6
- Suprapubic pain (pain over the bladder region, above the pubic bone)
- Urgency (strong sensation to urinate)
- Frequency (passing urine more often than is normal, which equates to more than every 2 hours, approximately)
- Nocturia (getting up more than 1 time per night to urinate)
- Dyspareunia (painful penetrative intercourse or attempted intercourse)
- Pelvic pain and/or pelvic floor dysfunction
The main focus for identifying these symptoms is to screen for and get help for those suffering from it, as quickly as possible. Delayed treatment prolongs pain and suffering, and with symptoms usually persisting longer than 6 months, the sooner people can get help, the better their outcomes can be. Unfortunately, this is currently where I see people in my practice at Garner Pelvic Health. They typically find me after they have spent months, usually years, exhausted from trying find someone who would listen to their story and help them find lasting relief.
What can be done to help?
Fortunately, there are numerous things that can be done. I approach IC/BPS care from a holistic, integrative perspective, which is in keeping with current recommendations. Unfortunately, many providers are not up to date on treatments, which is why people are often delayed in getting pelvic health therapy. I define holistic, integrative care using a lifestyle medicine approach. This means addressing every environmental factor which would influence pain and function - which includes discussing sleep, stress management, nutrition and gut health, endocrine disruptors in the environment that are known to influence pelvic pain, not just physical activity and movement.
Current recommendations support that IC/BPS treatment must be multimodal, which means no one treatment works for every person. Additionally, initial management strategies must include conservative treatments as follows:7
- Patient education
- Behavioral modification, also known as lifestyle changes or medicine
- Dietary advice
- Stress relief
- Pelvic physical therapy
Medical intervention is recommended only after conservative therapies fail7:
- Oral treatments such as amitriptyline
- Cystoscopy is essential to phenotype patients in order to correctly identify any Hunner lesions, which are typically handled via fulguration and/or resection.
- Intravesical instillation of DMSO or lidocaine, detrusor injections of botulinum toxin A
- Oral cyclosporin in those experienced with its prescription; however, it is associated with significant adverse events and requires intense monitoring.
Additionally, treatment recommendations can be found in the updated guidelines here: Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) and the short 3 page overview here.
Conservative therapies are the current gold standard for treatment, which basically describes what the field of pelvic health in physical and occupational therapy covers, especially when those services are steeped in Integrative and Lifestyle Medicine (ILM). If you are interested in learning how to include ILM in your pelvic health practice, learn more here. I also have a textbook on how to integrate ILM into your clinical practice as a PT or OT here. As a person with IC/BPS, I would strongly suggest that you seek out a therapist who is not just pelvic health trained, but also trained in ILM, in order to get the best outcomes.
The top 5 most common first line conservative treatments can be carried out in pelvic physical therapy, which can include:
1. Controlling inflammation
Systemic inflammation can be driven by all the factors on the treatment list that follow; meaning poor nutrition, sleep, and stress are all inflammatory, as well as identifying environmental bladder irritants. So it’s safe to say that the first line defense in managing IB/PBS is to reduce systemic inflammation. One of the theories of IC/BPS is that mast cell activation plays an important role in inflammation. In a study of 69 IC/BPS patients, histamine receptors were significantly elevated, which means dietary intervention could consider a low histamine diet and/or anti-histamine medication(s).8
2. Identifying dietary triggers
- Citrus fruits
- Coffee and caffeinated drinks
- Alcoholic drinks
- Spicy foods
- Carbonated drinks
- Gluten is also commonly identified as a dietary trigger, but not because of acidity, rather because of its ability to increase gut permeability, which could damage the gut microbiome and lead to other issues like IBS (irritable bowel syndrome) and/or SIBO (small intestinal bacterial overgrowth). In a large cohort study, IBS was shown to increase the risk of IC/BPS during a 12 year follow up.9
In a veteran study of those with IBS and IC/PBS, over 70% of people had at least one food sensitivity as compared to those without IC/PBS, leading the researchers to suggests that food sensitivities could be suggestive of interstitial cystitis/bladder pain syndrome.10
3. Identifying root cause
Functional medicine is a branch of medicine that looks for the root cause of a problem. For example, there is some evidence to suggest that the vaginal pH of people with IC/BPS may be different than the bacterial milieu of people without IC/BPS.11 LAdditionally, there is also evidence to suggest that the urinary microbiome and cytokine levels (indicative of the level of inflammation someone has in their body) are less diverse and more plentiful, respectively, than in people without IC/BPS. 12 Looking for new or existing root causes of IC/BPS can make it easier to customize the next treatment option in our life, Lifestyle Medicine.
4. Using Lifestyle Medicine to treat the root cause(s)
The pillars of Lifestyle Medicine include addressing sleep hygiene, improving sleep quality and optimizing sleep quantity, physical activity prescription that is individualized to the person’s needs and goals, elimination of endocrine and microbiome disruptors, identifying nutritional triggers as mentioned above, teaching stress management, and making sure the person has enough support to carry out therapy, which are all part of the recommended multi-modal treatment approach in the 2022 AUA guidelines. I have been teaching Integrative and Lifestyle Medicine to PT’s and OT’s for over 20 years, and this book is an excellent resource on how to get started:
5. Seeing a pelvic health therapist
Pelvic health practitioners can be physical therapists or occupational therapists. They receive specialty training in pelvic health beyond the standard doctoral preparation (and master’s degrees for OT), which can take anywhere between 1-4 years to complete.
In my more than 25 years of practice, these five areas of focus are the ones I have identified as the most critical in helping my patients and clients find long-lasting improvement from IC/BPS. IC/BPS can be a difficult, layered condition to treat, but it is not impossible or hopeless to treat. The more we discuss the effectiveness of an integrative approach, and the science that supports it; the more our treatments are multi-modal and appropriately favor conservative pelvic health therapy first, the better we can serve our community.
For Patients with IC/BPS
If you are looking for a pelvic physical or occupational therapist, there are several places to start to find a licensed therapist that specializes in IC/BPS:
- If you want to be seen as a patient at our clinic
- Book your first consult free if you are inside NC
- If you are outside NC and want to be seen, check to see if your state participates in the PT Compact, which would allow us to treat you via telehealth. Questions? Contact firstname.lastname@example.org
- If you are outside NC and want to find a therapist:
For Healthcare Providers who treat IC/BPS
If you are looking for training and certification in ILM, please visit these resources:
- Integrative & Lifestyle Medicine in Physical Therapy
- Integrative Lifestyle Medicine Certification (for PT and OT providers)
- Parsons JK, Parsons CL. The historical origins of interstitial cystitis. J Urol. 2004;171(1):20-22. doi:10.1097/01.ju.0000099890.35040.8d
- Lim Y, Leslie SW, O’Rourke S. Interstitial Cystitis. In: StatPearls. StatPearls Publishing; 2023. Accessed September 4, 2023. http://www.ncbi.nlm.nih.gov/books/NBK570588/.
- Jhang JF, Jiang YH, Kuo HC. Current Understanding of the Pathophysiology and Novel Treatments of Interstitial Cystitis/Bladder Pain Syndrome. Biomedicines. 2022;10(10):2380. doi:10.3390/biomedicines10102380
- Dell JR, Mokrzycki ML, Jayne CJ. Differentiating interstitial cystitis from similar conditions commonly seen in gynecologic practice. European Journal of Obstetrics & Gynecology and Reproductive Biology. 2009;144(2):105-109. doi:10.1016/j.ejogrb.2009.02.050
- National Institute of Diabetes and Digestive and Kidney Diseases. 1994. Interstitial cystitis. Rockville, MD: US Dept. of Health and Human Services, Public Health Service, National Institutes of Health. NIH publication no. 94-3220.
- Bogart LM, Berry SH, Clemens JQ. Symptoms of interstitial cystitis, painful bladder syndrome and similar diseases in women: a systematic review. J Urol. 2007;177(2):450-456. doi:10.1016/j.juro.2006.09.032
- Colemeadow J, Sahai A, Malde S. Clinical Management of Bladder Pain Syndrome/Interstitial Cystitis: A Review on Current Recommendations and Emerging Treatment Options. Res Rep Urol. 2020;12:331-343. doi:10.2147/RRU.S238746
- Shan H, Zhang EW, Zhang P, et al. Differential expression of histamine receptors in the bladder wall tissues of patients with bladder pain syndrome/interstitial cystitis – significance in the responsiveness to antihistamine treatment and disease symptoms. BMC Urol. 2019;19:115. doi:10.1186/s12894-019-0548-3
- Chang KM, Lee MH, Lin HH, Wu SL, Wu HC. Does irritable bowel syndrome increase the risk of interstitial cystitis/bladder pain syndrome? A cohort study of long term follow-up. Int Urogynecol J. 2021;32(5):1307-1312. doi:10.1007/s00192-021-04711-3
- Jarman A, Janes JL, Shorter B, et al. Food Sensitivities in a Diverse Nationwide Cohort of Veterans With Interstitial Cystitis/Bladder Pain Syndrome. J Urol. 2023;209(1):216-224. doi:10.1097/JU.0000000000002938.
- Karstens L, Asquith M, Davin S, et al. Does the Urinary Microbiome Play a Role in Urgency Urinary Incontinence and Its Severity? Frontiers in Cellular and Infection Microbiology. 2016;6. Accessed September 14, 2023. https://www.frontiersin.org/articles/10.3389/fcimb.2016.00078
- Abernethy MG, Rosenfeld A, White JR, Mueller MG, Lewicky-Gaupp C, Kenton K. Urinary Microbiome and Cytokine Levels in Women With Interstitial Cystitis. Obstetrics & Gynecology. 2017;129(3):500. doi:10.1097/AOG.0000000000001892
- Crouss T, Whitmore K. Voiding Dysfunction in Interstitial Cystitis Patients and the Relation to Pelvic Floor Dysfunction. Journal of Women’s Health Physical Therapy. 2021;Online First. doi:10.1097/JWH.0000000000000203
Additional References - Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022)