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Wendy Cohan, RN
Understanding IC and chronic pelvic pain
a holistic perspective from a nurse, patient and advocate
she was dxd in '96, got a decade of conventional care
eventually healed herself with holistic approach and believes it is the only cure
her book: The Better Bladder Book, published in Nov 2010
IC rarely occurs in isolation

pelvic pain
visceral, deep
emotional component
usu multicausal

15 million Americans suffer from chronic urinary sx
15-25% of women, 14% of men have chronic pelvic pain

DIFFERENTIALS

ddx: female
endometriosis
ov ca
vulvodynia/vstibulitis
pelvic congestion
PCOS, ov cysts

ddx: both
chronic uti
IBS
IC/PBS
lumbar/sacral discopathy
adhesions
pelvic floor dysfx: piriformis syndrome
bl ca (more in men)
urethral syndrome

ddx: men
prostatitis is #1, acute, chronic, bact and non-bact
pelvic myoneuropathy
prostadynia

IC DEFINED
inflam of bladder lining, sx vary
nervous system hyperexcitable, anb lining and allergic components, mb AI
4-8 million women in US may have it
often misdxd in men as prostatitis
may occur in children
can get disability for this disorder

SX
like UTI, esp frequency during flares, sleep deprivation
common for sx to be worst 2-4am, she suggests we should test cort at this time
relapsing/remitting
better with voiding
moderate IC = 14-18 voids/day
25/day severe IC
voids ev 10-20 mins during severe flare
irritative voiding
neg for UTI, mb pos for RBCs, WBCs
urinary hesitancy and dysuria: irritating sx, can't start
bladder spasms
pelvic inflam, suprapubic tenderness
urethral pain exclusively = urethral syndrome variant of IC
60-70% have pain with intercourse, more with low est time periods
correlates with vulvodynia
nocturia = 4+ times/night (DX criterion)
increased pain with certain foods
short term memory impairment due to sleep loss, anxiety, tearful, depression, exhaustion, adrenal fatigue
anger, frustration

DX
sx: irritative voiding, nocturia = 4+ times/night
hx, r/o infx, cystoscopy to see bladder wall
not all docs require scoping for dx
Hunner's ulcers in 5-10% of cases, hard to heal
glomerulations = petechiae of bladder wall
*PUF questionaire (pain, urgency, frequency) by UCSD Dr Parson's

RESEARCH FINDINGS ON IC PTS
high histamines
high substance P
bladder epithelium secretes anti-proliferative factor (APF) limiting tissue repair
low early am cortisol levels in humans and cats
IL8 key? low in IC pts, maintains uroepithelial cells, adding it saves the cells
IC pts have low levels of genetic messenger for IL8 manufacture
high CRP, low GF
Hunners ulcer pts have 10000 genes more active than in others, sim to AI, lymphatic dz pts
assoc w: IBD, sjogren's, lupus, celiac, CFS, fibromyalgia, pelvic pain, IBS has strong correlations
EPIC study: events preceding IC, allergy v common, also functional somatic syndromes incl CFS, IBS, FM
chronic prostatitis pts report food allergies, lots of studies support food allergy connxn
gluten sensitivity in 31-41% of pts
ICA survey 2011: celiac with official dx in 12%, gluten intolerance in 19%
Baylor 2010 study: n=56, all had gluten sensit using enterolab stool test, most improved on GF diet
kidney disorders also assoc with gluten intol, fat malabsorb-->incr oxalate absorb-->more stones
Berger's dz, IgA nephropathy, 1/3 of pts with celiac have this
Buffington and Chew studies: cats with IC have small adrenal glands, cortex v small, low cort production
cort imp for maintaining tight junction integrity so low cort-->leaky bladder syndrome
pain-->need for more cort-->worse adrenal fatigue
lowest am cort = worst sx in human pts
pts have less cort and DHEA: must assess adrenals!!!

CONVENTIONAL TX
bladder instillations of "cocktails", anesthetic, sodium carbonate, Elmiron or Hparin, regular applications, mb done at home, also newer: chondroitin sulfate, hyaluronic acid, others
Elmiron is mucopolysaccharide for GAG layer repair, only approved med for IC, helps less than 1/3 of pts, causes rectal bleeding, headaches, hair fall out, takes 3-6 weeks to work, can't afford without health insur
Atarax is hydroxiyzine hydrochloride is antihistamine, too sedating for most pts
may improve sleep and reduce pain
hydroxyzine inhibits pancreatic fx, CI for DM pts, incr blood sugar x4 days
combination of Elmiron, antihist and antidepressant (elivail/amitrytypline, cymbalta, paxil) available
more: neurontin/gabapentin, narcotics, anti-anxiety mets, muscle relaxants, antispasmodics
otc nsaids not strong enough and may provoke sx
biofeedback
TENS
interstim
cystectomy

PROBS WITH ALLO TX
rare to consider food allergies/sensitivities in spite of 95% of pts having them
urine broth culture can pick up occult UTIs, rarely done
longterm abx given for occult infx, leads to gut dysbiosis
consider for occult: staph, eterrococcus, serratia, chlaymydia, mycoplasma
sx ignored
AI and adrenal testing not done
tx for sx only
tx invasive and repetitious
nutrit ignored
hormones and sexual health not considered
basic coping measures not supported

ETIO
so many theories!!! so many factors.
she likes: trauma, stress, AI, orgs, occult infx, neurogenic inflam
sitting too much on hard surface
"perfect storm" of triggers

PELVIC FLOOR DYSFX
UTI sx, pain in pelvis, genitals, perineum, with ejac
decr urine flow
discomfort when sitting
urinary inconteinence assoc w tense pelvic floor
trauma or preg may trigger
chronic constip
tx: balance Ca/Mg, go when urge, stay regular, PT postpartum, relaxation, breathing
sx flare with ic pain flare
affects at least 70% of pts with IC
PT is a good bridge with allo care, may lead to full recovery

SORT THESE
mean age of onset 42, 44% of pts had hysterectomies prior to onset of IC (Scripps study)
flares occur just after ov when est decr
2002 study: AI dz incr in women w/ endometriosis, exact same AI as with celiac
bladder endometriosis causes sx identical to IC in 70%, cystoscopy to distinguish

TRIGGERS
irritants: caff, vinegar, alc, soy, salt, cran, oxalates, choc, sorbates, sulfites, aspartame
common allergens: wheat, gluten, dairy peanuts, citrus, tomato, sugars incl sucrose, yeast, fermented

ASSESSMENT FOR ALL PTS WITH IC
adrenal fx incl during night time wakeful periods
IgG and IgE allergies, food sensit testing
celiac testing
serum hormone panel for sex hormones, dhea, cortisol with 5th sample during am pain peak
vit D in all pts with chronic pain
test for XMRV, virus assoc w FM, test for this in pts with fatigue, mm pain, tender pts
pain level and pattern, journal, anxiety level
nutritional assessment
hx of birth trauma
hx of sexual assault or iatrogenic abuse
assess for suicide risk (4/9 suicide rate in OR last studied)
evaluate pelvic floor dysfx

TX
no DMSO!! permanent scarring
address high hist
poor sleep
pain, freque, urge
nutrition
anx
stress rdx
tx pelvic floor
hormonal balancing
tx adrenal def and fatigue
address food sensitivities: gluten? dairy?
pharm as bridge
stretching, warming, cooling tx
alkalizing tx
demulcents, anti-inflam tea: marshmallow, slippery elm, plantain, linden flower
massage, reiki, etc
avoid: coffee, bikes, sitting on hard, stress
TOP tx ideas:
baking soda in water 1/4 tsp/8oz, sipped
tiger balm patch above pubic bone for sleep
ashwagandha her fave herb, regs detrusor mm activity, helps with hesitancy
linden tea (tilia) for bladder, chamomile also v useful
bathing in warm with no soap
natural fiber clothing esp undergarments
exercise w/o pressure on vulva
sex: avoid spermicidal gels
pads use natural
careful: IUD, diaphragms can agg (bio-identical hormones may help)

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