Interstitial Cystitis (IC) From a Pelvic PT Perspective & Review of The American Urological Association Guidelines

Interstitial Cystitis (IC) From a Pelvic PT Perspective & Review of The American Urological Association Guidelines

Going pee seems like a simple daily habit that we all take for granted. Women who suffer from IC, also known as painful bladder syndrome, have to suffer daily due to their bladder causing pain and not functioning properly. It causes immense suffering and often women are ignored and/or treated very poorly in our medical system. In this blog post I want to cover what I clinically see when women present with IC, what are the treatment options offered by pelvic health PT’s and other providers, and successful case studies!

SYMPTOMS & PRESENTATION

Normal bladder habits:

Everyone presents different from IC and can have different aspects of their urinary habits affected. Let’s talk about normal urinary habits first so we can better understand what is abnormal. It is typical to go pee every 2-4 hours or about 4-8 times a day  (Carriere 2006). The amount someone urinates does depend on the amount of fluid they are taking in, if you are drinking half of your body weight in fluid ounces (recommended water intake for the day) it is common to urinate closer to the 2 hour mark, if you are not drinking enough, likely you will urinate closer to the 4+ hour time frame which indicates that you should drink more fluids. The volume of pee should be about 8 seconds or longer while peeing if a normal healthy stream or if measuring the volume the bladder capacity is 400-600 cc or ml (cc = cubic centimeters = 1 milliliter). Most people will feel their first minimal sensation to urinate when the bladder is at about 40% full, but normally this can be easily ignored and we go about our way  (Fowler 2008). Then at 60% capacity, we get our first desire to void, but if it is not a good time to urinate we will again go about our day and ignore this sensation (Abrams 2002). At 90% capacity there is a strong sensation to void and at this point is necessary to find a bathroom. (Abrams 2002).

Abnormal bladder habits:

Women who present with interstitial cystitis, painful bladder syndrome, overactive bladder, pelvic floor dysfunction, vulvodynia, and/or dyspareunia diagnoses will have several different types of abnormal bladder and health habits, such as these listed below:

FREQUENCY: Some women will feel a very strong sensation to pee every 30-90 minutes. This is way too frequent and often only a small amount of urine is coming out, the bladder is not actually full. What starts to happen is classical conditioning of the bladder, where when the bladder is said only 40% full, a strong message is sent from the bladder to the brain that the bladder is full and you have to pee. The bladder starts to be conditioned that this is when it is time to eliminate. A pelvic health PT will help come up with an appropriately timed void schedule and teach you void suppression techniques to help address this and “retrain” the bladder. 

URGENCY: One of the most common aspects of IC is the intense urgency, there is a strong sensation to urinate even when the bladder is not full. Often, even after peeing women may still have a strong sensation to urinate. Often women will describe that they just stay on the toilet to push all the urine out, then wait a few minutes and push more out. There are several things about this that need to be addressed and a pelvic health PT will educate you about this and teach you how to address this.

PUSHING TO PEE: The frequency and urgency can lead to women trying to push all the urine out, as they feel they are not fully emptying the bladder when they pee. First, it is not good to push urine out (I know it feels like you want to get it all out and it gives some temporary relief) but this downward pushing causes a lot of stretch to the pelvic floor muscles and connective tissue, it also disrupts the normal pattern of voiding as it should be involuntary.  Voluntary pushing of this kind will change the muscle function and can cause a dyssynergic pattern for urination and bowel movements (dyssynergy definition: Uncoordinated contractions of muscle fibers; e.g., of the urinary bladder when the external urinary sphincter is closed). Also when a person with normal bladder functions pushes to urinate after they have finished it is normal to get about 2-3 seconds more of urine out. It is also normal that if you wait a few minutes on the toilet you can push more urine out again. The best thing to do in this case is go pee until you feel you have finished voiding, then once done get up off the toilet and find something to do to distract yourself away from the sensation to need to urinate still - as this is often a “false urgency message” that the nervous system is sending up to the spinal cord and then to the brain. 

PAIN: This is by far one of the worst aspects of suffering from IC. The pain is located typically at the very low abdomen and deep in the vaginal tissues, right where the bladder sits. The bladder sits right behind the pubic bone and on the top wall of the vagina (See photo). This pain can be so debilitating that often women are not able to maintain a job, especially since they have to go pee all the time. The pain is scary which leads to the behavioral pattern of going pee frequently. Some women with IC describe that if they do not go in time, then they are not able to pee at all and have urinary retention, which is even scarier. This is why it is imperative to work with a pelvic health PT to determine an appropriate plan to properly address the pain, frequency, urgency, and come up with an ideal void schedule that will not cause urinary retention. 

URINARY RETENTION: As described above, some women with IC are not able to fully eliminate their bladder when they pee. Again, it is still not ideal to try and push the urine out. Often this retention is due to high muscle tone in the pelvic floor muscles and restrictions of the pelvic connective tissues that are leading to poor elimination. This can be well addressed with conservative care by a pelvic health PT. 

ANXIETY WHEN OUT OF THE HOUSE: Being in the car is by far one of the biggest anxiety triggers for women with IC for several reasons. There is no bathroom quickly available and often women will leak urine due to the urgency while in the car. Certain things can also cause trigger urgency besides the car such as pulling up to a store, getting out of the car, hearing water run, and putting your key in the door. All of these triggers can be “habituated” with proper void suppression education - which works wonders!

POOR SLEEP: Women with IC often will describe that right before bed they feel they have to urinate multiple times, often with only small amounts of urine coming out. Then at night, some women will also wake several times to pee which vastly disrupts their sleep. There are several tools that can be used for this to help gain control at night, decrease the urgency, and allow for proper sleep. This is extremely important as sleep is vital for health and healing. 

PAINFUL SEX: Since the bladder sits on the top wall of the vagina it causes the pelvic floor muscles and connective tissues to be restricted and hyper-sensitive. This, in turn, will result in pain with intercourse, tampon insertion, or during a gynecological exam. I have seen this cause massive disruption in relationships and is another cause for immense suffering for these women. Their partners don’t fully understand, don’t want to be the cause of harm while trying to be intimate, and women become afraid of sex. This pain will improve with proper care from a pelvic health PT by decreasing restrictions in the connective tissues, decreasing high tone in the pelvic floor muscles, and allowing for sensory desensitization of the sacral nerves. A slow and appropriate “graded exposure” plan should be utilized to address this and not cause significant pain during the rehab plan of care. 

TREATMENT OPTIONS

This is a review of the American Urological Association Guideline for diagnosis and treatment of interstitial cystitis/bladder pain syndrome (2011, amendment in 2015). Treatment options should be considered in this order due to the benefit to risk ratio that each of these treatments can offer. First-line treatments have high benefit possibilities with low risk (pelvic health PT), whereas treatments further down the list have increased risk, adverse events, and irreversibility aspects to the intervention type. It is of my opinion that all conservative care be fully exhausted before proceeding to treatment options that are more invasive. I have seen people “fail pelvic health PT” and other conservative approaches and then move on to more invasive treatments. However, when I talk with them further they typically had poor quality PT management and/or may not have performed their advised home care program well. I truly believe that if simple life habit changes (i.e. bladder timed voiding, void suppression, appropriate diet changes, exercise prescription, sleep management, anxiety management, self-treatments) have not been made, it is impossible to say that conservative treatment has failed. Often I see far too many women receive treatment options that are considered 3rd, 4th, 5th, 6th line of treatment options very early on in their care before 1st and 2d line treatments have been utilized. This is a massive disservice to these women and medically unethical. 

First-Line Treatment (all considered Clinical Principles): All suggestions are aspects of care that a skilled Pelvic Health PT will implement - meaning Pelvic Health PT is a FIRST LINE TREATMENT!

• Education about normal and abnormal bladder functions. (Pelvic health PT will do this)
• Benefits versus risks of different available treatments and education that no one treatment type has been found to be effective for the majority of patients. (Pelvic health PT will do this)
• Education and assistance with implementations of how to perform self-care practices and behavior modifications that can improve symptoms. (Pelvic health PT will do this)
• Education and implementation of stress management practices to decrease stress-related symptoms. (Pelvic Health PT will do this). Stress is by far one of the leading causes of IC development in my opinion; having proper stress management is vital for recovery. 

Second Line Treatment:

• Appropriate manual PT interventions such as trigger point release, lengthening muscle contractures, decreasing tissue restrictions. Pelvic floor strength training programs are not recommended (clinical principle). I disagree with the last statement, I clinically see that this should not be utilized at first, but biofeedback EMG training is essential later in care to allow women to gain good control and spatial awareness of their muscles to allow for relaxation and contraction of the pelvic floor muscles - often properly monitored strength training programs with breath coordination can allow the muscles to fatigue out and relax well.
• Pain Management approaches (Expert Opinion). This can be helpful when a qualified pelvic health PT is not available, but often I have to slowly help my patients get off of all their pain medications - with the assistance of their prescribing physicians. 
• Amitriptyline, cimetidine, hydroxyzine, or pentosan polysulfate are oral medications that may be administered (Evidence Grades B, B, C, & B respectively). Clinically I see that amitriptyline is helpful initially, but it’s effects are not long term and makes women’s plan of care longer due to the effects it has on the nervous system’s hypersensitivity - I view this as a band-aid treatment which makes women think they are doing better than they are and meanwhile their pelvic tissues and health are getting worse.
• DMSO, Heparin, or Lidocaine intravesical treatments  (Evidence Grades C, C, and B)

Third Line Treatment:

• Cystoscopy under anesthesia with low-pressure/short-duration hydrodistention may be utilized ONLY if first and second-line treatments have not provided symptom control (Evidence Grade C). Okay, let’s talk about this! This is what gets my blood boiling - the recommendations are to ONLY perform a cystoscopy once 1st and 2nd line treatments have failed - yet this is ONE OF THE FIRST things that urologist and gynecologist will perform. I can not tell you how many women have been sent into a massive flare after this invasive procedure and to me there is almost no benefit or clinical changes that will occur after the test. Often pelvic health PT has never even been mentioned - so how is it that cystoscopies are performed so frequently!?
• When Hunner’s lesions are present, a fulguration and/or injections of triamcinolone should be performed (Evidence Grade C). Hunner’s lesions are rarely found during cystoscopy from what I have clinically seen. Maybe 5% of the women I have treated were found to have Hunner’s lesions when given an IC diagnosis.

Fourth Line Treatment:

• Neurostimulation trail can be performed and if considered successful a permanent device can be placed ONLY if other treatments have not provided proper symptom reduction (Evidence Grade C). This is another device that I see WAY OVER prescribed and utilized when conservative care from a pelvic health PT was never even attempted.

Fifth Line Treatment:

• An oral medication of Cyclosporine A, only if all other treatments have not adequately addressed symptom control (Evidence Grade C)
• Intradetrusor botulinum toxin A,  only if all other treatments have not adequately addressed symptom control. An adverse risk with this treatment is intermittent self-catheterization (Evidence Grade C).

Sixth Line Treatment:

• Major surgery: substitution cystoplasty (Cystoplasty is a surgical procedure for bladder enlargement, urinary diversion with or without cystectomy (Cystectomy is the removal of the bladder) this is suggested only in carefully selected patients when ALL OTHER therapies have failed (Evidence Grade C).

Treatment THAT SHOULD NOT BE OFFERED: These treatments were found to have low efficacy and high rates of adverse events: 

• Long term oral antibiotic or glucocorticoid administration (Evidence Grade B & C, respectively)
• Intravesical installations of bacillus Calmette-Guerin or resiniferatoxin (BCG) (Evidence Grade B & A, respectively) 
• Hydrodistension wit high pressure and long duration (Evidence Grade C)

SUCCESSFUL CASE STUDIES

Treatment that was utilized for these case studies include:

• Pain neuroscience education every session to ensure understanding and patient's ability to apply to their health and pain
• Education on how to perform void suppression timed void schedule, proper urine and bowel voiding patterns and biomechanics
• Stress management strategies such as (expressive writing, active meditation, guided meditation, progressive muscle relaxation protocol, extensive education and practice of diaphragmatic breathing
• Sleep education: sleep hygiene education and guided meditation (patients choice, yoga Nidra, Irest was suggested) with soft Bluetooth headphones
• Diet education utilizing The Wahls Protocol for autoimmune conditions
• Exercise prescribed (strength, stretch, balance, motor control) in a very safe and appropriate prescription to ensure progress and minimize flares (exercise is crucial but has to be managed well by a PT to decrease the risk of flares)
• External distal to rectum EMG biofeedback for down training (with diaphragmatic breathing) and motor control of the pelvic floor muscles
• Manual myofascial release, trigger point release, Theile’s massage on the suprapubic tissues, pelvic floor muscles, periurethral tissues, adductors, glutes, piriformis. 
• TENs (transcutaneous electrical stimulation) on the sacral nerves and suprapubic tissues
• Ultrasound for 5 min at 1 MHz on the suprapubic tissues prior to manual interventions on the suprapubic tissues

1. Mrs. P was a sweet and kind female in her 30’s who presented to pelvic health PT after reading online that it could possibly help with IC. She had been suffering from IC for 5+ years and it had completely taken over her life. She was unable to work, was struggling in her relationship with her husband due to her decreased ability to participate in normal life activities and intimacy, and had two young children to care for. Mrs. P had significant anxiety which is likely what lead to her IC (I find that the majority of women with a diagnosis of IC have generalized anxiety). Being in the car caused the worst anxiety due to her strong urgency and frequency. She had to find clean bathrooms along her travel routes, get her two young children out of the car, and then try and rush to a bathroom while trying to not pee herself...often she was unable to do so and would have to pee in the car on a pad. Mrs. P received treatment from Dr. Molly Hart for about 12 weeks at 2x a week. She was scheduled to have a sacral neurostimulator placed (4th line treatment and never was offered pelvic health PT until she decided to go herself) in December as it was the end of the year and her insurance would cover the costs. The goal of treatment was to not only get her better but to ensure that she did not get a sacral neurostimulator as this is considered the fourth line of treatment and all conservative care should be failed before going down this pathway. Mrs. P slowly progressed during her treatment and by the end of her sessions, she had completely normal bladder functions and no pain. She was able to urinate at 2+ hour durations, had control over her urgency when it was present, had successful intercourse with her husband without a flare, and had her life back. Needless to say, she canceled her sacral neurostimulator trial. 

1. Ms. A was a young girl in her 20’s who came to pelvic health PT after an endometriosis excision surgery that she was not prepared for. She woke up with a massive lower abdominal incision from the surgery, but originally went in for exploratory surgery to determine if she had endometriosis. When she first came to PT, Ms. A was not looking at or touching her surgical incision due to fear of the pain. Ms. A was treated by Dr. Molly Hart 2x a week for 16 weeks, had a 6-week break to perform self-care at home, and then returned for 2x a week for 8 weeks. The first 16 weeks were focused on scar acceptance and mobilization, myofascial release of the abdominal and pelvic floor tissues due to restrictive adhesions and significant hypertonicity of the muscles, and education about pain, exercise, diet, and sleep as these play a massive role in persistent pain. The second round of care started due to Ms.A starting to have bladder pain, frequency, the urgency of urination, and urinary retention patterns. When she went to see her Urogynocologist, she was informed that she had IC and it was insisted she has an intravesical treatment that day (I am not sure what solution was utilized)! This caused a massive flare of her IC. She came back to pelvic health PT to address her IC pain. After one session her pain was 75% gone (2 days after her intravesical treatment). The remaining sessions were focused on suprapubic and periurethral manual interventions and sensory desensitization. Ms. A was discharged with minimal to no pain in her abdomen, bladder, and pelvic region and has been able to properly manage her care with techniques she learned while in pelvic health PT. She does occasionally have flares and will come in for one session to calm her pain. 

1. Ms. M was a wonderful and beautiful female in her 30’s when she came to pelvic health PT due to her IC. One of her physicians recommended over a year ago that she should see a pelvic health PT but she always put it off. Ms. M was having significant IC flares, bladder pain, urgency, and frequency that was negatively affecting her life, job, and relationship for years. Ms. M was well educated on conservative treatment options for IC and was talking all the necessary supplements and diet changes. She was treated by Dr. Molly Hart at 2x a week for about 12 weeks. Treatment is always slow and steady progress with IC. At the end of Ms. M’s care, she was no longer having bladder pain, had normal urinary void times, minimal to no urinary urgency (diet depended), and was able to have intercourse with her partner without a flare. Ms. M had her life back and was ready to be discharged at this time. I have kept up with Ms. M and she is still doing well and living an incredible life. 

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