By Stephanie Prendergast, MPT, PHRC West Los Angeles
What is Interstitial Cystitis? IC is a pelvic pain syndrome characterized by irritated bladder symptoms. This condition is associated with painful sex, pelvic floor dysfunction, vestibulodynia, endometriosis, and gut dysbiosis. What are the symptoms? Symptoms include bladder pain, urinary urgency, urinary frequency, pain worsened with bladder filling, nocturia, and dysuria. The symptoms occur in the absence of infection.
Like many other pelvic pain diagnoses, how to diagnose and treat IC has evolved over time as we learned more and more from well-designed research studies. Despite research and definitive guidelines from the American Urologic Association (AUA) there is still misinformation circulating. We are here to help set the record straight and to help suffering patients make better choices.
How to diagnose IC:⠀
According to the AUA guidelines that were published in 2011 and updated in 2014, the diagnosis of IC is a clinical diagnosis. This means that once infections are ruled out a doctor can make the diagnosis based on symptoms. There are no diagnostic tests that can confirm or refute if IC is present. Historically IC was thought to be a disease of the bladder lining, in which lesions called Hunner’s Ulcers are present and seen on cystoscopy. We now know Hunner’s Ulcers only comprise 10% of cases of people who meet the subjective criteria for an IC diagnosis. The MAPP Research Network has identified several other subsets (known as phenotypes) of Interstitial Cystitis. The majority of patients have ‘normal’ looking bladders even though they may have minor to severe irritative bladder symptoms.
If it isn’t the bladder what could cause people to have these bothersome symptoms? Research shows pelvic floor dysfunction, hormonal insufficiencies (from things such as oral contraceptive pills and acne medications, perimenopause and menopause), and central nervous system hypersensitivity can exist alone or in combination. Effective treatment depends on identifying people’s clinical phenotype(s).
Experts in pelvic pain syndromes are aware of these changes, however, most urologists, urogynecologists and pelvic floor PTs are still in the dark. We receive a number of questions about the phenotypes, diagnosis, and treatment options. We understand the confusion and therefore are answering some of the most common questions below!
Q: IC is no longer considered a bladder disease? I was told by my urologist that it was when I was diagnosed. Is there a source or somewhere I can read more?
A: Check out our latest blog about IC; But is it really Interstitial Cystitis? There is a lot of confusion over it and it is constantly being updated with new information. We also have a resource blog and a YouTube video on the topic.
Q: Hi there! I have done Pelvic Floor Physical Therapy for well over three years with three different very well regarded therapists…and no improvement in urgency and frequency, which are my two biggest IC symptoms. I have tried all other treatments out there except Botox, Interstim and Cyclosporine. I wanted to try Cyclosporine…but can’t find a doctor who will prescribe it. Any suggestions? What do you tell clients who are treatment resistant?
A: It is likely safe to assume that after three years of skilled pelvic floor PT that pelvic floor and girdle muscle dysfunction should be resolved, and therefore, can be ruled out as a source of your urgency and frequency. If pelvic floor physical therapy didn’t help, pelvic floor botox will not likely be therapeutic. As we mentioned there can be a number of reasons for these symptoms. Other factors to consider include diet, histamine intolerances, hormonal deficiencies, endometriosis, blood sugar dysregulation, and central nervous system hypersensitivity. It is helpful to work with providers that can help assess which other factors may play a role for you. Evidence shows Insterstim can be helpful. I am not aware of the evidence to support the use of cyclosporine and I do not have clinical experience with this medication.
Q: What recommendations should I give my IC patient who suffers from extreme pain, especially when she sleeps?
A: Have you given your patient any home exercises? The following can help with regular maintenance: Deep Breathing, Stretching Regimen, External Trigger Point Release (often with use of a foam roller), External Self-Massage (often focused on the fascia), and Internal Trigger Point Release (often using a tool like the PelviWand®)
Follow up Q: Wow! Thanks for the helpful tips! I appreciate it so much! I will be seeing the patient today so I will make sure to start her on diaphragmatic breathing, stretching to hip flexors, adductors, piriformis, and other structures I find necessary! In terms of trigger point release, I’ve only taken level one with hw. How should I find where to release if the pain is mainly around her tummy?
Follow up A: Depends on where the abdominal pain is coming from exactly. Have you learned techniques on how to release the connective tissues on the abdomen)? Also, when you are doing external PT work, you can use that time to acquire feedback from the patient to see if there are any referral patterns when releasing certain areas of the pelvic floor; this should help guide treatment.
Follow up A: Your patients should also be under the care of a skilled pain management doctor who can help with pharmacologic support.
Q: Those cystoscopy procedures are absolutely terrible! I was re-traumatized when they did mine while wide awake using “numbing” gel. And then couldn’t pee without pain for two weeks. glad to see it’s no longer needed to diagnose IC.
A: It is definitely not for everyone! There are new regulations to assess and rule out other symptoms before cystoscopy even becomes an option. So sorry you had that traumatizing experience.
Q: Elmiron didn’t work and I have macular degeneration.
A: Elmiron will only be effective on a small subset of patients, likely those that truly have bladder impairments (versus bladder symptoms). If the symptoms are from the other subsets Elmiron will not likely help and unfortunately studies have linked it’s use to macular degeneration. We are so sorry you are experiencing this and thank you for bringing up this point.
Q: Do you not recommend hydrodistention? I was referred for it but have not started the treatment.
A: The AUA guidelines put short duration, low-pressure hydrodistention as the third line of treatment, but only if the first and second have not provided acceptable symptom control. Even then, high pressure & long duration of hydrodistention is not recommended. The link to the AUA guidelines is above.
Q: How do you get tested for gut dysbiosis?
A: A SIBO test can help get a better look at your gut biome. There’s an overlap between bladder pain and gastrointestinal symptoms. Root cause relief for Small Intestinal Bacterial Overgrowth (SIBO) and Interstitial Cystitis-related bladder pain requires optimizing the functioning of the digestive system and health of the gut microbiome. You can request a breath test for SIBO from your physician or through Jandra’s services here at PHRC. A stool test can also be helpful, we use the test from Genova.
Q: Natural treatment?
A: Pelvic floor physical therapy is one of the most-proven treatments for interstitial cystitis, especially because over 87% of people with IC also have PFD. Other ‘natural’ treatments can include meditation and yoga to address CNS dysfunction, acupuncture, and lifestyle and diet changes offered by an integrative health specialist with pelvic pain experience, such as Jandra Mueller here at PHRC: She offers virtual visits. Melissa Patrick is also here at PHRC and a yoga and meditation instructor, also offering virtual appointments.
Q: My urologist prescribed hydroxyzine for my IC and it’s been helping so much! Can you explain why allergy medicine is helping with this?? How does this relate to histamine in the body?
A: Bladder symptoms can be due to high histamine levels, it is an antihistamine so it helps reduce that which can help with overall inflammation which can also be related to bladder symptoms.
Q: How do you find the cause? And is it possible you could have an IC diagnosis but actually have endo? IC diagnosis at 23, most active pain at night!
A: If you have been diagnosed with IC or any of the symptoms (bladder pain, urinary urgency, urinary frequency, pain worsened with bladder filling, nocturia, dysuria), it could be a sign of a pelvic floor dysfunction and/or endometriosis as they often exist together and have overlapping symptoms. We recommend seeing a pelvic floor PT to help with a full diagnosis.
Q: How do they diagnose it? I had the worst bladder issues all month & my pelvic floor PT thought I might have it. I have extreme pressure on my bladder when it’s full but in July it was also when it was not full & I had to go just a little constantly.
A: The diagnosis of IC is a clinical diagnosis, made based on symptoms and after other things such as infections have been ruled out. Technically, physical therapists are not permitted to make medical diagnoses, a diagnosis should be made by a doctor.
Follow up Q: Thank you for the clarification. I understand IC as ulcerative or non ulcerative and if it’s non-, then it’s more “Painful Bladder Syndrome” so is the current push for “TRUE” IC diagnosis to not include the presence of hunner’s lesions?? I’m a fellow PF PT here who was confused by no diagnostic tests necessary.
Follow up A: I know the lack of testing can be frustrating, IC is currently a diagnosis of exclusion because there are no tests (imaging, labs, cultures) that can confirm or refute it. Thanks to the MAPP Research Network we can clinically identify patient phenotypes which help guide treatment. People can have overlapping or multiple phenotypes, it is helpful to work with a solid team that includes medical management and PT and things will get better!
Are you unable to come see us in person in the Bay Area, Southern California or New England? We offer virtual physical therapy appointments too!
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
Melissa Patrick is a certified yoga instructor and meditation teacher and is also available virtually to help, for more information please visit our therapeutic yoga page.
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