CHRONIC PELVIC PAIN:CHRONIC PELVIC PAIN:

OUT OF SIGHT... OUT OF MINDOUT OF SIGHT... OUT OF MIND

Prof . Massimo Prof . Massimo CandianiCandiani

Head Dept Obstetrics and Head Dept Obstetrics and GynecologyGynecology

Univ. Hospital San Univ. Hospital San RaffaeleRaffaele, Milan, Italy, Milan, Italy

SOCIETAL IMPACT OF PAIN

MAY 3-4, 2011

EUROPEAN PARLIAMENT, BRUSSELS

2

The diseaseThe disease

“…people just can’t see anything wrong visibly,

there’s no broken leg or anything.

Nobody says ‘ you poor thing you have a broken

leg’

Nobody can see it, so you’re quite lonely in that

aspect”

A PATIENT

Seear , 2009

The annual

prevalence of CPP in primary care was estimated to be 39/1000

women between 15- 73 years of age

3

WhoWho’’s in charge?s in charge?

4

The diseaseThe disease

1. There is often no consensus on the DEFINITION of

gynecological chronic pelvic pain

Diagnostic delayDiagnostic delay

… pain of at least 3 months duration that

occurs below the umbilicus, not exclusively

cyclical or intercourse related and is severe

enough to cause functional disability or

require treatment.

ANATOMICAL & DURATIONAL

...does not only consist of symptoms

localized to an anatomical region present

for 3 to 6 months, but also constitutes a

distinct, complex, multidimensional disease

entity, comprising psychological, organic

and psychosomatic phenomena, called

chronic pelvic and perineal pain

syndromes

AFFECTIVE & BEHAVIOURAL

Price et al., 2006

Rachel et al, 2004

5

The diseaseThe disease

2. There are different possible etiologies, ofter overlapping

and a poor correlation between symptoms and extent of

underlying disease

Diagnostic delayDiagnostic delay

Laparoscopic gynecological findings during CPP investigation

Howard, 2000

6

Diagnostic delay in relation to the dimension of DIE

Matsuzaki et al, Fertil & Steril, 2006

7

The patientThe patient

1. Normalization of symptoms & Lack of education

Diagnostic delayDiagnostic delay

“…I just assumed I was just one

of the unlucky people that got

bad period pains. …I’d never

heard of endometriosis before”

Age26

Symptoms for 4 years prior to

diagnosis

Ballard et al 2006

“…It was awful just going for

these flipping internals,

backwards and forwards, all the

time being told that there’s

nothing there”

2. Frustration

8

The societyThe society

Diagnostic delayDiagnostic delay

1. Menstruation as a ‘discrediting attribute’; fear of working

discrimination and prejudice

“…..long standing stereotypes of

women as essentially weak,

close to nature, prone to

sickness and in need of special

care and protection”

Seear 2009

9

As a resultAs a result……

Diagnostic delayDiagnostic delay

• 20% see a gynecologist

• 10% other physician

• 1% mental health evaluation

• 70% …..see no one?

10

1. Normalization of symptoms

“…..Stress, you know, any sort of kind

of stress, stress related issues, can

always make things…”

GP

2. Intermittent suppression of symptoms

with hormones

“When I was 14 I got prescribed the

Pill. It was like “This’ll help you. Take

it!”

3. Lack of training

“I’ve never really thought of any

condition as being CPP. So it’s like a

new description. CPP does’t spring to

mind as a diagnosis I’d put on a

computer very often”

GP, interviewed

Mc Gowan 2010

Diagnostic delayDiagnostic delay

The healthcare professionalThe healthcare professional

11Mc Gowan 2010

4. Therapeutic nihilism

Diagnostic delayDiagnostic delay

The healthcare professionalThe healthcare professional

“…..CPP is to me a pain that you’ve

tried in every way to solve, by surgery,

by pain killers, by treating what you

feel is the underlying condition, but

that pain has not gone away”.

GP

ESHRE Guidelines for the pelvic pain suggestive of

endometriosis

Kennedy et al, Hum Reprod, 2005

13

WhatWhat’’s the delay?s the delay?

Author, year Estimated diagnostic delay

(years)

Wood et al, 1992 6

Hardfield et al, 1996 11.7 (US) 7.96 (UK)

Dimowsky et al, 1997 4.6

Husby et al, 2003 6.7

North American Endometriosis Association Survey (1998):

4000 women interviewed

50% of them needed at least 5 consultations before diagnosis

14

• 61% no diagnosis given by physician

• 39% diagnosis given

25% endometriosis

49% a non-cycle related gynecologic disorder (e.g. yeast infection or chronic PID)

10% non-gynecologic disorder

16% other

Uncomfortable diagnosisUncomfortable diagnosis

Swanton, 2006

TO SUM UP …

15

DelayDelay’’s implicationss implications

THAT’S WHAT DIAGNOSTIC DELAY MEANS

16

Old patients, new challengesOld patients, new challenges

BOOSTING

SIGHT & VISIBILITY

INTERNATIONAL

INCENTIVES

COMMUNICATION

TRAINING

GUIDELINES

“Out of sight, out of mind,

You can’t see but you’re not blind”

(Anthrax, State of Euphoria, 1990)

SOCIETIES

CROSSTALK

17

..BARRIERS WE DIDN’T EVEN EXPECT

TO SEE ARE NOW BEING OVERCOME.

Speed up!Speed up!

18

Thank YouThank You