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Interstitial Cystitis (IC)

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The Wise-Anderson Protocol (Stanford Protocol) and treating the Symptoms of Interstitial Cystitis (IC)

It is estimated that 700,000-4,000,000 people in the U.S. (about 90% of whom are women) are diagnosed with interstitial cystitis (IC) a diagnosis traditionally referring bladder inflammation and/or ulceration and where the capacity of the bladder to hold urine is reduced. Below is a comprehensive list of symptoms that we see in our patients who have been diagnosed with interstitial cystitis. Following our listing of these symptoms, we discuss details about our understanding of and treatment for IC.

A detailed list of symptoms of interstitial cystitis treated by the Wise-Anderson Protocol

Most patients have from several to many of the symptoms. Rarely do patients experience all of the symptoms.

 Urinary frequency and Urinary urgency (need to urinate too often, and hard to hold urination once urge occurs)

  • For patients, urinary frequency can range from being annoying to debilitating
  • There is typically a feeling of something always nagging in the bladder/urethra/genitals and typically after someone urinates, patients report that they don’t feel ‘emptied’ after urination and are left with the feeling of having to urinate again even though there is little to urinate
  • The sense of relaxation one feels after normal urination when there is no pelvic pain is not there
  • There is often/always a nagging feeling in the area around the bladder … sometimes patients push in on the bladder to see if it there is any reason to urinate
  • Frequency/urgency can result in the feeling of often having to be near a bathroom. Sometimes one can hardly hold in the urge to urinate when it arises
  • If one is in a movie theatre, or at a sports event etc., one usually looks to sit in an aisle seat to be prepared to exit easily to void
  • Some patients feel that their life revolves around being near a toilet
  • Urinary urgency and frequency can deprive patients of sleep because of how often they wake up during the night or because they have difficulty going back to sleep after they wake up
  • Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. However, a worsening of symptoms may occur if a person with interstitial cystitis gets a urinary tract infection

Dysuria (pain or burning during urination)

  • Burning or pain with urination is often disconcerting
  • Discomfort or burning during urination associated with pelvic floor dysfunction
  • When the chronic spasm and myofascial contraction of the pelvic muscles is resolved, in many of our patients, dysuria is also resolved
  • Sometimes people feel no pain during urination but only after
  • Dysuria can be very painful and urination becomes a large ordeal and sets off further pain

 Nocturia (frequent urination at night)

  • Often nocturia is a major problem in that someone’s sleep is so disturbed they are exhausted all the time
  • Exhaustion from sleep deprivation tends to feed into the cycle of tension, pain, protective guarding and anxiety

Anterior trigger points and areas of muscular constriction

  • In our clinical practice we have found that people with IC typically have many trigger points anteriorly (in the front) in the rectus abdominus, and in the anterior levator and obturator internus muscles inside the pelvis
  • Pelvic floor physical therapy self-treatment and the reduction of anxiety in our experience play a large role in helping symptoms

 Reduced urinary stream and hesitancy of urination

  • In men this is an important symptom to medically evaluate as to whether the source of the reduced stream from prostate enlargement or other issues
  • Hesitancy of initiating urination can be worsened when urine is held in longer than comfortable (because we speculate the tightening of the muscles to hold in the urine can results in a kind of spasm that is slow to release upon urination)
  • Reduced urinary stream can be a contributing symptom to low self-esteem and hypochondriasis, especially in younger men
  • When urinary symptoms are part of muscle based chronic pelvic pain syndrome, after rehabilitating the pelvic floor, the flow of urine can improve
  • Some people with muscle based pelvic pain have to wait to initiate a stream of urine

 Perineal pain

  • Perineum pain is a common symptom in those we have treated who have been diagnosed with IC. It is intimate, can hurt continuously, and can be very distressing
  • The perineum is the place where most muscles of the pelvic floor attach and therefore has many sources of referred pain and can be on one side or another
  • Perineum is often the site of bicycle riding pain
  • Perineum pain can be made worse by sitting or standing
  • In a 2009 Stanford study of our work published in the Journal of Urology, it was documented that 79% of subjects complained of pain in the perineum
  • In our 2009 study we documented key abdominal and pelvic muscles that all refer pain to the perineum (rectus abdominus, adductor magnus, and coccygeus)
  • The perineum and the anal sphincter are parts of the body where some patients feel the feeling of “sitting on a golf ball”
  • Chronic perineal pain is intimate pain and can be very distressing

Dyspareunia (pain with sexual activity in women)

  • Sexual activity can be painful either during or afterward
  • Pain is felt on the outside of the vagina, inside or both
  • Pelvic examination in which trigger points are palpated can often recreate symptoms of pain during sex

 Sitting pain

  • Sitting can trigger or exacerbate discomfort/pain/symptoms and can hurt in the front, back, or front and back of the pelvis
  • Sitting is one of the great sufferings and scares in pelvic pain and makes all aspects of normal life difficult
  • Sitting pain makes one acutely aware of how sitting is the center of social and work life
  • Sitting pain usually starts out milder in the morning but after sitting through the day, there is increased discomfort that can last into the night
  • Patients often look for the padded seats in a restaurant because sitting is so uncomfortable
  • Sitting pain can make it miserable to sit with friends or family and socialize
  • Difficult to fly or drive for any distance without pain
  • Sometimes patients have to go on disability because they can’t work because their job is a sitting job
  • Sitting pain is one of the symptoms that raises the fear that you might not be able to work or function
  • Most patients endure sitting pain and deal with the increase of pain during the day

 Genital pain

  • Women can have pain inside the vagina, on one side or another
  • In women, sometimes vulvar pain accompanies pelvic pain
  • We have found that in muscle based pelvic pain, genital pain is usually referred from the anterior levator ani muscle of the pelvic floor

Suprapubic pain (pain above the pubic bone)

  • Suprapubic (above the public bone) pain is a common symptom
  • Suprapubic pain is common with patients who have urinary frequency, urgency, hesitancy and other anterior symptoms
  • Sometimes pressing on this area can refer into the anorectal (anus and rectal) area and sometimes bladder pain is experienced here as well
  • Pain can be on one side or another or in the middle

 Coccyx (tailbone) pain or Coccygodynia/coccydynia

  • Tailbone pain is common
  • It is typically referred pain from the pelvic floor or muscles attached to the tailbone and not from the tailbone itself
  • Many patients we have seen who had their tailbones removed typically felt no relief
  • Coccyx pain is often related to post bowel movement pain

Low back pain (on one side or both)

  • Low back pain is common and often confuses patients and practitioners because the symptoms are referred from the muscles of the pelvic floor, not the low back
  • Discomfort can be on one side or another or migrate from one side to another

Discomfort or relief after a bowel movement

  • Relief after a bowel movement occurs when the tight pelvic muscles relax
  • Discomfort after a bowel movement can be particularly disconcerting when people have post bowel movement pain if the post bowel movement pain triggers symptoms more strongly for the rest of the day
  • Little is written about this symptom when it occurs in the absence of hemorrhoids or anal fissures, but in our experience it is common
  • The mechanism of defecation typically involves the filling up of the rectum with stool, which then sends a signal for the internal anal sphincter and puborectalis muscle to relax and triggers the experience of urgency to have a bowel movement
  • Once the stool passes through the relaxed anal sphincter and out of the body, the internal anal sphincter reflexively closes
  • When someone has pelvic pain and exacerbation of symptoms after a bowel movement, we propose that the internal anal sphincter tends to ‘over close’
  • That is, it tightens up more than it was tight before the bowel movement and sometimes appears to go into a kind of painful spasm
  • Post bowel movement pain appears to occur less frequently when someone is relaxed and not hurried, and whatever contributes to a more relaxed state during a visit to the bathroom may reduce this symptom
  • Resolving post bowel movement pain in our patients tends to occur as their entire chronic pelvic muscle tension releases

Certain foods can flare up symptoms in some patients

  • Moldwin et. al reported in the Journal of Urology that certain foods aggravate symptoms of interstitial cystitis. They report: There is a large cohort of patients with painful bladder syndrome/interstitial cystitis in whom symptoms are exacerbated by the ingestion of specific comestibles. The most frequently reported and most bothersome comestibles were coffee, tea, soda, alcoholic beverages, citrus fruits and juices, artificial sweeteners and hot pepper

We have however had patients who reported aggravation of symptoms with certain foods who had no indication of interstitial cystitis so food sensitivity is not a definitive marker of IC

Heat (hot bath or shower, heating pad) or ice helps temporarily

  • Hot water or heat often helps temporarily
  • Heat sometimes flares up symptoms; patients feel relief using cold packs or ice

Benzodiazepines can temporarily reduce symptoms

  • The family of drugs called benzodiazepines can often relieve symptoms for a few hours and are helpful when used skillfully
  • Benzodiazepines are addictive and when used regularly for pelvic pain, they can lose their effectiveness
  • Benzodiazepines typically make the user tired and should not be used when driving or having to be alert

Reduced libido (reduced interest in sex)

  • Reduced interest in sex is common with pelvic pain
  • In pelvic muscle related pelvic pain, there is typically no pathology of the physical structures involved in sexually activity
  • Our view is that reduced libido is a mix of anxiety, reduced self-esteem and pelvic pain which all mitigate against sexual arousal and sexual interest, and resolution of pain and dysfunction of the pelvic muscles usually resolves reduced libido

Anxiety and catastrophic thinking

  • The most difficult part of pelvic pain tends to be the catastrophic thought that it will never go away
  • Most patients who have chronic pelvic pain are preoccupied with their pain
  • Anxiety and catastrophic thinking distracts patients’ attention away from life and paints an unacceptable picture of the future

Depression

  • When one is in the throes of pelvic pain, the thought that it will never go away triggers depression in many patients
  • Where doctors cannot help and one sees no light at the end of the tunnel, depression and/or anxious depression is the rule rather than the exception
  • Depression involves the feeling of helplessness about being able to do anything about what feels critically wrong in one’s life

Social withdrawal and difficulty in intimate relations

  • Social withdrawal often stems from chronic pain and it can detrimentally affect any enjoyment of the moment
  • There is a major toll that chronic pelvic pain takes on relationships, including the partners of those in pain
  • The difficult issues that arise from partners involve the problems that arise from the patient’s withdrawal from sex, withdrawal from going out and doing things with others, planning trips, parenting, socializing, and doing the normal activities of partnership or marriage
  • Pelvic pain robs patients of the ability to be fully present in relationship with family and friends

Impairment of self-esteem

  • Self-esteem almost always goes down when one has pelvic pain
  • Men and women with chronic pelvic pain almost always worry that no one will want to be with them

Sleep disturbance

  • Sleep disturbance is common
  • Patients either wake up to urinate or because of pain and anxiety
  • We wrote a paper about precipitous rise in cortisol in the morning amongst pelvic pain patients

Stress increases pain

  • ordinary stresses as well as extraordinary stress tend to increase symptoms
  • when stress has triggered pelvic pain, the stress tends to triggers the tension-anxiety-pain-protective guarding cycle that continues after the stress has gone
  • Helplessness and hopelessness is the real suffering with chronic pelvic pain
  • Helplessness comes from a patient’s inability to stop pain/discomfort that is draining and scary
  • Hopelessness in pelvic pain patients arises when they can’t see anything on the horizon that might help them

Co-existing conditions

  • Interstitial cystitis may coexist with other disorders such as irritable bowel syndrome, fibromyalgia, vulvodynia, vulvar vestibulitis, pelvic floor dysfunction, Raynaud’s syndrome, and migraine headache among others. It is not uncommon for some diagnosed with IC to have suffered childhood trauma, anxiety and considerable current emotional distress

Interstitial Cystitis is a controversial diagnosis: some doctors regard it as a waste basket diagnosis and dispute its existence as a clear diagnostic entity

Interstitial cystitis is a diagnosis that is controversial for a number of doctors. In our own practice we have found that in many of our patients who have been diagnosed with IC, their symptoms have significantly improved without dealing with the bladder at all. More than a few of our patients have been diagnosed without any investigation of their bladder and with testing that is controversial (like filling the bladder under anesthesia with enough water to stretch the bladder and make the bladder bleed).

Among the most effective treatments for interstitial cystitis is pelvic floor physical therapy. In the Journal of Urology (Volume 182, Issue 2, August 2009, Pages 570–580, the Mary Pat Fitzgeral and Rodney Anderson state:

There were 23 (49%) men and 24 (51%) women randomized during a 6-month period. Of the patients 24 (51%) were randomized to global therapeutic massage, 23 (49%) to myofascial physical therapy and 44 (94%) completed the study. Therapist adherence to the treatment protocols was excellent. The global response assessment response rate of 57% in the myofascial physical therapy group was significantly higher than the rate of 21% in the global therapeutic massage treatment group (p = 0.03).

Conclusions: We judged the feasibility of conducting a full-scale trial of physical therapy methods and the preliminary findings of a beneficial effect of myofascial physical therapy warrants further study.

Interstitial Cystitis may be confused with pelvic floor dysfunction

Interstitial cystitis may be confused with pelvic floor dysfunction as it is often accompanied with pelvic floor dysfunction in which the muscles of the pelvis are in a chronically tightened and guarded state. We have often found that many patients diagnosed with IC significantly improve using our protocol. While we have not studied patients with the diagnosis of IC specifically, we know that anxiety and emotional arousal is a central feature of patients diagnosed with IC and we believe our protocol that focuses on lowering nervous system arousal may be a of central benefit to these patients.

Hanno discusses the issue of anxiety and mental health comorbidity issues in his article, Painful Bladder Syndrome/Interstitial Cystitis and Related Disorder in elsevierhealth.co.uk 2007;

“There is an associated high incidence of comorbidity including depression, chronic pain and anxiety and overall mental health (Michael et al 2000: Rothrock et al 2002: Hanno, Baranowski, Fall et al 2005)”

Some researchers hypothesize bladder inflammation may occur as the result of neurogenic inflammation in response to ongoing guarding of the pelvis muscles.

LOCATIONS OF PAIN ASSOCIATED WITH INTERSTITIAL CYSTITIS

In a recent survey of 264 women with IC conducted by physicians at the University of Maryland and Johns Hopkins University, it was found that the respondents were quite precise in identifying multiple sites of pain with pain sensations described as ‘throbbing, tender, piercing or aching.’ For genital pain sites, ‘burning, stinging and sharp’ were the pain descriptions. The order ranking of the most frequently reported sites of pain were suprapubic (above the pubic bone), urethral and genital areas, followed by other non-genitourinary sites. Suprapubic and urethral pain were reported as worsening either with bladder filling or just before urination in 50% or more of the women although this symptom can also occur with non-interstitial cystitis patients. Approximately 80% of survey respondents also indicated pain worsening in these areas after consumption of certain food and drinks, as discussed below.

Cystoscopy under anesthesia with hydrodystension of the bladder has been considered the gold standard for diagnosing interstitial cystitis. This method of make a diagnosis was challenged by a significant study done by Waxman et.al. at Texas A&M (Journal of Urology Volume 160, Issue 5, November 1998, Pages 1663–1667) found that when women who underwent tubal ligation underwent cystoscopy under anesthesia with hydro-distension, the bladders of women with no symptoms appeared no different than women diagnosed with interstitial cystitis who reported symptoms. The article stated:

Results: A total of 20 normal women with a mean age plus or minus standard deviation of 29 +/ 6 years consented to participate in this trial during laparoscopic tubal ligation. Photographs of bladder sites before and after distention with 890 +/ 140 ml. were scored as 1.4 +/ 0.3 (before distention) and 3.1 +/ 1.1 (after distention) on the scale of 1 to 5. The increase in scores following distention in normal subjects was seen to the same degree and in the same proportion as in patients with symptoms of interstitial cystitis (8 to 19 symptomatic patients in this series met current diagnostic criteria for interstitial cystitis). Slight but significant differences were seen among sites in the bladder but not between 2 and 6-minute distention durations.

Conclusions: Bladder mucosal lesions characteristically associated with irritative voiding symptoms and pelvic pain in patients diagnosed with interstitial cystitis were observed in asymptomatic women.

TRIGGER POINTS AND INTERSTITIAL CYSTITIS

In our clinical experience, we have found a large number of painful, myofascial trigger points in the internal and external pelvic muscles in those previously diagnosed with IC.  After evaluation and diagnosis by a competent physical therapist, these trigger points can be accessed and manipulated by the patient him/herself. We strongly believe that it is important that IC patients be taught how to identify and work on the trigger points themselves. Our new, FDA approved Internal Trigger Point Wand makes it relatively easy for IC patients to perform trigger point release on themselves, particular because our Wand makes the anterior trigger points (trigger points in the front part of the pelvis where IC patients typically have a majority of their trigger points) relatively easy to access.

WISE-ANDERSON PROTOCOL AND INTERSTITIAL CYSTITIS

A constellation of chronic pelvic pain, pelvic muscle dysfunction, protective guarding against pain, chronic pelvic tension including pain-referring trigger points, and a predisposition toward anxiety and catastrophic thinking that feeds anxiety may all be part of a self-feeding, self-perpetuating cycle of muscle based pain in women and men previously diagnosed with IC. The goal of the Wise-Anderson Protocol is to interrupt this cascade of events. This is done in our treatment clinics by training our patients to do their own internal and external physiotherapy and training our patients in a method called Paradoxical Relacation, which reduces anxiety and the arousal of the nervous system

In training patients in our protocol, we focus on teaching patients how to quiet their anxiety and nervous system arousal themselves. We believe this is especially important because IC patients may have a greater predisposition toward anxiety or have relatively more anxiety as a result of their condition. Quieting anxiety in our protocol is most effectively done by teaching our patients how to help themselves and reduce their pain and related symptoms. The methods for doing this include regular internal and external physiotherapy self-treatment, the regular practice of Paradoxical Relaxation, and the management of negative and anxious thinking that tends to spin off into catastrophic thinking.

We teach our protocol in 6 day, monthly immersion clinics held in Santa Rosa, California, for which we offer more detailed information below.

6-Day Treatment Clinic for Interstitial Cystitis and Related Conditions

About the Wise-Anderson Clinics for interstitial cystitis

The Wise-Anderson Protocol is a pioneering treatment first developed and used in the Department of Urology at Stanford University and later in comprehensive 6 day immersion clinics in which patients are trained in self-treatment in all of the physical, psychological and behavioral parts of the method. Our team originally developed the Wise-Anderson Protocol and has treated pelvic pain patients for over 20 years using the protocol. In the latest published research, it was shown to help a majority of patients who attended the 6-day immersion clinic, and we have helped many patients over the years who prior coming to our clinic only had a diagnosis of interstitial cystitis. Below we will refer to interstitial cystitis as simply pelvic pain.

The Wise-Anderson Protocol is a training of patients who suffer from pelvic pain on how to rehabilitate their chronically contracted and spastic muscles of the pelvic floor and to relax the nervous system that feeds the pelvic tension and perpetuates chronic pelvic pain. The immersion clinics are offered privately to eligible patients in a monthly 6-day immersion formats and are held in Santa Rosa, California.

The clinic is limited to 14 patients who learn the protocol in private and group sessions. The aim of these clinics is to train patients in how to reduce or resolve their pelvic pain and related symptoms without the need for ongoing professional assistance.

In the past there has been no solution.

Chronic pelvic pain syndromes have been a puzzle to the best medical minds for a century. Antibiotics, anti-inflammatories, prostate massage, and surgical procedures, which form the backbone of traditional treatments, have been of little use in dealing with these debilitating afflictions. Most patients with pelvic pain fade into the background, stop going to the doctors and suffer silently. Some undergo heroic procedures and surgeries that only complicate their condition.

New treatment that rehabilitates the pelvic muscles.

In A Headache in the Pelvis, we describe a new treatment protocol developed over a period of 8 years at Stanford University’s Department of Urology that has stepped out of the box of conventional medical treatment. This treatment comprehends the nature of pelvic pain, which is typically a condition of ongoing spasm and contraction in the muscles of the pelvis that can cause havoc with urination, defecation, ejaculation, sitting, and other basic kinds of functions. This involves a treatment that has been successful in substantially reducing or resolving the symptoms of pain and dysfunction in a select group of men and women with chronic pelvic pain syndromes. This protocol is based on a new understanding that chronic pelvic pain syndrome is not caused by prostate, bladder, or other organ pathology but instead by chronically contracted pelvic floor related muscles that can cause a variety of difficult symptoms that few can understand unless they have actually experienced it. The Wise-Anderson Protocol (Stanford Protocol) is an inter-disciplinary treatment. It addresses the physical and behavioral and psychological dimensions of this psycho-physical problem.

The Content of the clinics

  • Individual medical evaluations are done with physicians associated with our clinics prior to the intensive program, at which time the nature of the condition of the participants will be evaluated and the appropriateness of the treatment protocol determined.
  • Participants undergo a specific form of physiotherapy training consisting of pelvic floor related Trigger Point Release developed for chronic pelvic pain syndromes and physiotherapy self-treatment instruction on a daily basis.
  • Participants are trained to use an FDA approved Internal Trigger Point Wand that that allows the patient to safely and effectively loosen the pelvis in a way that has only been available through competent, professional treatment.
  • Training in Paradoxical Relaxation of the pelvis. A year-long plus, 60 lesson (40 hour) audio course in Paradoxical Relaxation is an integral part of the instruction during the clinic and is geared toward training participants to use the recorded lessons of the course at home. Specific cognitive strategies for reducing the impact of frequent negative/catastrophic thinking that accompanies chronic pelvic pain syndromes are part of the curriculum.
  • The main goals of the Wise-Anderson Protocol are to train participants to self-administer the physiotherapy and behavioral components of treatment at home on a regular basis. Patients receive a map of their trigger points and areas of restriction. Pelvic floor physiotherapy is done in conjunction with regular paradoxical relaxation.

Our patients are typically people who have had pain and dysfunction for years, have seen numerous doctors, and have unsuccessfully used the conventional treatments. We have established these monthly 6 day clinics to allow us to treat in a 6 day period patients who live far away. We believe that they are the most effective and comprehensive form of the treatment available, as described in our book, A Headache in the Pelvis. Perhaps the greatest suffering for patients with pelvic pain is the sense of helplessness that they feel in the presence of their chronic pelvic pain and dysfunction. The aim of the Wise-Anderson Protocol is to empower patients to help resolve their own symptoms through their own skillful efforts.

When we are successful in helping people with this problem, our help is in the form of giving patients the tools to reduce or stop their symptoms. When participants comply with the home practice portion of the protocol, many experience windows of symptom reduction or resolution. Stable reduction or resolution of symptoms in patients who do respond to our protocol (we do not help everyone) can take months to a few years and in many individuals who respond to our treatment, improvement tends to continue over time with the use of the protocol. These clinics train participants to do self-treatment at home. They are done in a small group and consist of approximately 20-30 hours of treatment over the period of 6 days.

 

 

 

 

Schedule of Clinics

2015 Clinic Schedule

January 15-20
February 19-24
April 9-14
May 28 – June 2
July 16-21
August 27 – September 1
October 1-6
November 5-10
December 10-15