>> I WANT TO THANK EVERYBODY WHO
JOINED US THIS AFTERNOON AND
HAVE OVER 800 REGISTRANTS AT OUR
LAST COUNT.
WE WANT TO MAKE SURE WE'RE USING
USE OF OUR TIME AND SQUEEZING
EVERY LAST SECOND OF OUR
FANTASTIC SPEAKERS ON THE PANEL
TODAY.
I WANT TO START BY KICKING IT
OVER TO THOSE IMPORTANT WOMEN
GIVING OUR OPENING REMARKS,
DR. JANINE CLAYTON FOLLOWED BY
DR. BIANCHI FROM THE EUNICE
KENNEDY SHRIVER CLINIC OF CHILD
HEALTH AND HUMAN DEVELOPMENT.
>> THANK YOU, DR. TINGEN AND
THANK YOU FOR JOINING US TODAY
FOR THE SECOND EVENT IN THE NIH
WOMEN'S HEALTH ROUNDTABLE
SERIES.
I'M HONORED TO WELCOME YOU TO
CHARTING NEW PATHS.
THIS SERIES IS AN INTEGRAL PART
OF THE WHITE HOUSE WOMEN'S
HEALTH INITIATIVE WHICH AIMS TO
ADDRESS CRITICAL ISSUES IN
WOMEN'S HEALTH.
TODAY WE'LL FOCUS ON THE
IMPORTANT TOPIC OF END
MEETRI
MEETRIOSIS.
IT'S A COMPLEX CONDITION THAT
IMPACTS MILLIONS OF WOMEN
LEADING TO SEVERE PAIN IN CASES
INFERTILITY AND OTHER
COMPLICATION.
DESPITE THE WIDESPREAD EFFECT,
ENDOMETRIOSIS REMAINS COMPLEX.
THE DIVERSE SYMPTOMS AND COMPLEX
UNDERLYING MECHANISMS OF THE
DISEASE UNDER SCORE THE URGENT
NEED FOR COMPREHENSIVE RESEARCH
AND SUPPORT TO ADDRESS OUR GAPS
IN KNOWLEDGE.
FILLING THESE GAPS IS ESSENTIAL
FOR ENHANCING OUR UNDERSTANDING
AND IMPROVING CARE FOR THOSE
AFFECTED BY THIS CONDITION.
AND THIS ROUNDTABLE WAS
DEVELOPED IN RESPONSE TO
PRESIDENTIAL MEMORANDUM ISSUED
BY THE WHITE HOUSE ON NOVEMBER
13, 2023 WHICH LAUNCHED THE
FIRST EVER WHITE HOUSE
INITIATIVE ON WOMEN'S HEALTH
RESEARCH.
THIS INITIATIVE IS SPECIFICALLY
DESIGN TO INTRODUCE
INTERDISCIPLINARY WOMEN'S HEALTH
RESEARCH.
IN ADDITION, PRESIDENT BIDEN
SIGNED EXECUTIVE ORDER 14120 ON
ADVANCING WOMEN'S HEALTH
RESEARCH AND INNOVATION
MANDATING WOMEN'S HEALTH REMAIN
A CENTRAL FOCUS ACROSS THE
FEDERAL RESEARCH AGENDA AND
BUDGET.
AND TODAY'S EVENT EXEMPLIFIES
OUR COMMITMENT TO THAT GOAL.
THE GOAL IS TO BRING
ENDOMETRIOSIS TO THE FOREFRONT
AND DRIVE INNOVATIVE RESEARCH
AND DRIVE PATIENT CARE.
I AM DELIGHTED THIS EVENT IS
CO-HOSTED BY THE NIH OFFICE ON
WOMEN'S HEALTH AND THE EUNICE
KENNEDY SHRIVER INSTITUTE OF
CHILD HEALTH AND HUMAN
DEVELOPMENT.
THIS JOINT EFFORT IS EMBLEMATIC
OF OUR NIH WIDE DEDICATION TO
ADVANCING WOMEN'S HEALTH
RESEARCH.
TOGETHER WE HAVE ASSEMBLED A
DIVERSE GROUP OF KEY INTERESTED
PERSONS INCLUDING RESEARCHERS
AND INTERESTED PERSONS AND
COMMUNITY MEMBERS TO SHARE
INSIGHT AND EXPERIENCES.
AS WE ADDRESS TODAY'S TOPIC WE
LOOK FORWARD TO PARTNERING WITH
OTHER INSTITUTES AND COLLEAGUES
IN TACKLING ADDITIONAL ISSUES IN
THE FUTURE CRUCIAL TO THE HEALTH
OF WOMEN.
I WOULD LIKE TO TAKE A MOMENT TO
ACKNOWLEDGE DR. DIANA BIANCHI
SHE'S BEEN INSTRUMENTAL IN
BRINGING THIS EVENT TO FRUITION.
HER DEDICATION TO IMPROVING THE
LIVES OF WOMEN AND CHILDREN IS
TRULY INSPIRING AND WE'RE
FORTUNATE TO HAVE HER AS A
DRIVING FORCE IN THIS
INITIATIVE.
TODAY WE'RE HERE TO LISTEN,
LEARN AND COLLABORATE.
WE'LL EXPLORE THE LATEST
DEVELOPMENT IN ENDOMETRIOSIS
RESEARCH AND DIAGNOSIS AND
TREATMENT.
THIS ROUNDTABLE WILL FOCUS ON
THE CHALLENGES THAT PATIENTS AND
HEALTH CARE PROVIDERS FACE AND
SEEK STRATEGY TO OVERCOME THESE
HURDLES.
IMPORTANTLY WE'LL ALSO NEED TO
AMPLIFY THE VOICES OF WOMEN
AFFECTED BY ENDOMETRIOSIS AND
CONSIDER THE HEALTH DISPARITIES
THAT AFFECT THEIR CARE.
THE ORWH UNDER STUDIED, UNDER
REPORTED AND UNDER REPRESENTED
U-3 SUPPLEMENT PROGRAM IS ALSO
SUPPORTING SEVERAL INNOVATIVE
PROJECTS AIMED AT ADVANCING OUR
UNDERSTANDING OF ENDOMETRIOSIS
WHICH UNDER SCORES OUR
COMMITMENT AGAIN TO ADDRESSING
THESE COMPLEX ISSUES.
BY ACKNOWLEDGING AND ADDRESSING
THESE DISPARITIES WE CAN WORK
TOWARDS MORE EFFECTIVE SOLUTIONS
AND MAKE SURE THEY REACH
EVERYONE.
WE HOPE TODAY'S DISCUSSIONS WILL
HELP SHAPE THE FUTURE OF
ENDOMETRIOSIS RESEARCH AND CARE,
ENSURING WE MOVE TO A DEEPER
UNDERSTANDING OF THIS CONDITION.
I WANT TO EXTEND A HEARTFELT
THANKS TO OUR ESTEEMED PANELISTS
AND PARTICIPANTS AND THOSE
BEHIND THE SCENES FOR THEIR
CONTRIBUTIONS.
YOUR EXPERTISE AND COMMITMENT
ARE INVALUABLE AS WE WORK
TOGETHER TO IMPROVE THE LIVES OF
THOSE AFFECTED BY ENDOMETRIOSIS.
IN CLOSING I ENCOURAGE EVERYONE
TO ENGAGE FULLY IN TODAY'S
DISCUSSION, SHARE YOUR
KNOWLEDGE, ASK QUESTIONS AND
CHALLENGE ASSUMPTIONS.
LET'S USE THIS OPPORTUNITY TO
PUT SCIENCE TO WORK FOR THE
HEALTH OF WOMEN.
THANK YOU ONCE AGAIN FOR BEING
HERE TODAY AND I LOOK FORWARD TO
A PRODUCTIVE AND INSPIRING
ROUNDTABLE.
BACK TO YOU, DR. TINGEN.
>> THANK YOU FOR HIGHLIGHTING
THE TRANS NIH NATURE OF THE TALK
AS IT'S COLLABORATIVE AND WE'RE
EXCITED TO WORK TOGETHER ON THE
IMPORTANT TOPIC.
DR. BIANCHI, I'LL TURN IT OVER
TO YOU FOR YOUR OPENING REMARKS.
>> THANK YOU, DR. TINGEN.
GOOD AFTERNOON, EVERYONE.
ON BEHALF OF NICHD WE'RE
THRILLED TO BE HERE AND TO BE
CO-HOST
CO-HOSTING THIS PROGRAM.
I'M THE DIRECTOR OF THE EUNICE
KENNEDY SHRIVER NATIONAL
INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT, ALSO KNOWN AS
NICHD AND WE HAVE QUITE A BIG
PORTFOLIO IN WOMEN'S GYNECOLOGIC
HEALTH IN PARTICULAR.
NICHD'S MISSION IS TO LEAD
RESEARCH AND TRAINING TO
UNDERSTAND HUMAN DEVELOPMENT,
IMPROVE REPRODUCTIVE HEALTH,
ENHANCE THE LIVES OF CHILDREN
AND ADOLESCENTS AND OPTIMIZE
ABILITIES FOR ALL.
ENDOMETRIOSIS AFFECTS 10% OF
WOMEN WORLDWIDE AND
ENDOMETRIOSIS ALSO INCREASES THE
RISK OF OVARIAN CANCER,
DEPRESSION, MIGRAINES, LUPUS,
MULTIPLE SCLEROSIS AND PAIN AND
AUTO IMMUNE DISEASES.
FINDING BETTER WAYS TO
DEFINITIVELY DIAGNOSIS AND TREAT
ENDOMETRIOSIS IS CRUCIAL TO
IMPROVING WOMEN LIVES.
THE AVERAGE TIME TO DIAGNOSIS
ENDOMETRIOSIS 10 YEARS AND THE
ONLY CURRENT METHODS ARE
INVASIVE.
WE SUPPORT A PORTION OF
ENDOMETRIOSIS RESEARCH AND ONE
OF THE ASPIRATIONAL GOALS IN OUR
2019 STRATEGIC PLAN WAS TO FIND
NEW WAYS TO DIAGNOSIS AND
PREVENT AND TREAT ENDOMETRIOSIS.
SO WE HAVE BEEN VERY COMMITTED
FOR A LONG TIME WITH REGARD TO
THIS PARTICULAR CONDITION.
AND TO THAT END AND HERE WE HAVE
THE IMPORTANT SLIDE I WANT YOU
TO LOOK AT, LAST WEEK NICHD
ALONG WITH THE NATIONAL
INSTITUTE OF BIO MEDICAL IMAGING
AND BIO ENGINEERING OTHERWISE
KNOWN AS NIBIB LAUNCHED THE
RAPID ACCELERATION OF DIAGNOSTIC
TECHNOLOGIES FOR RADX TECH
ADVANCING CURES AND THERAPIES
AND ENDING ENDOMETRIOSIS
DIAGNOSTIC DELAYS KNOWN AS THE
ACT ENDO CHALLENGE.
IT WILL AWARD $3 MILLION IN
PRIZES TO ACCELERATE THE
DEVELOPMENT OF INNOVATIVE
TECHNOLOGIES FOR THE DIAGNOSIS
OF ENDOMETRIOSIS.
WE ARE SEEKING TEAMS AND
HOPEFULLY SOME OF YOU ARE
LISTENING OUT THERE, WITH IDEAS
TO SHORTEN THE TIME TO
DIAGNOSIS, ELIMINATE THE
INVASIVENESS OF CURRENT
TECHNIQUES IMPROVE
ACCESSIBILITY, SAFETY,
CONVENIENCE AND REDUCING THE
COST OF DIAGNOSIS.
INNOVATIVE APPROACHES MAY
INCLUDE IMAGING TECHNOLOGIES, IN
VITRO DIAGNOSTIC DEVICES,
CLINICAL LABORATORY TESTS,
WEARABLE DEVICES, SMARTPHONE
ENABLED DIAGNOSTIC TOOLS,
INTEGRATED SENSING TECHNOLOGIES
AND DIGITAL HEALTH PLATFORMS.
THIS TWO-YEAR CHALLENGE WILL
CONSISTENT OF THREE PHASES.
SUBMISSIONS TO PHASE 1 ARE GOING
TO BE DUE OCTOBER 11, 2024 AND
THE FINAL WINNERS ARE EXPECTED
TO BE ANNOUNCED IN MARCH OF
2026.
THE GOAL OF THIS CHALLENGE IS TO
MAKE A MEANINGFUL IMPACT ON THE
MILLIONS OF REPRODUCTIVE AGED
WOMEN AND GIRLS AFFECTED BY
ENDOMETRIOSIS.
I'D LIKE IT THANK ALL THE PEOPLE
WHO HAVE BEEN INVOLVED IN
ORGANIZING THIS PARTICULAR
PROGRAM AS WELL AS OUR SPEAKERS,
PEOPLE LISTENING, PEOPLE ENGAGED
AND WILL BE ASKING QUESTIONS,
THE PEOPLE BEHIND THE SCENES WHO
ARE PUTTING TOGETHER THE
AUDIO/VISUAL ASPECTS OF THE
PROGRAM AND OF COURSE STAFFS OF
BOTH THE ORWH AND NICHD AND ANY
OTHER INSTITUTES OR CENTERS
INVOLVED IN THE PROGRAM.
SO WITH THAT, I'D LIKE TO TURN
THE ROUNDTABLE OVER TO
DR. CANDACE TINGEN THE CHIEF OF
NICHD'S GYNECOLOGIC HEALTH AND
DISEASE BRANCH.
CANDACE.
>> THANK YOU VERY MUCH,
DR. BIANCHI.
TO THE AUDIENCE I WANT TO SAY
THE SET OF ROUNDTABLES AS
DR. CLAYTON MENTIONED IS THE WAY
NIH GETS BACK IN TOUCH WITH OUR
COMMUNITY AND LET'S YOU KNOW THE
RESEARCH AND SCIENCE AND
CLINICAL WORK THAT WE ARE DOING
ON BEHALF OF THE AMERICAN
PUBLIC.
AND SO IN HOPES OF BRINGING
THESE PANEL OF AMAZING
CLINICIANS AND PATIENT ADVOCATES
AND SCIENTISTS CLOSER TO YOU,
I'VE ASKED THEM TO INTRODUCE
THEMSELVES IN A SLIGHTLY MORE
IMPERSONAL MANNER SO WE CAN FEEL
WE'RE ALL TOGETHER IN THE ROOM.
I'LL ASK MY SPEAKERS JUST TO
COME ON CAMERA AND VERY BRIEFLY
EXPLAIN YOUR CONNECTION TO
ENDOMETRIOSIS AND WHY YOU'RE
HERE TODAY AND THEN GIVE YOU THE
TIME FOR TALKS TO HEAR FROM EACH
OF YOU.
I'LL START WITH DIANA.
>> HELLO.
THANK YOU FOR HAVING ME.
IT'S GREAT TO BE HERE.
I'M DIANA FALZONE ABLE
AMBASSADOR FOR THE ENDOMETRIOSIS
FOUNDATION OF AMERICA, HOST AND
PRODUCER OF ENDO TV AND
JOURNALIST AND LIVE WITH
ENDOMETRIOSIS.
>> THANK YOU.
STACY.
>> I'M A PROFESSOR AT UNIVERSITY
OF MICHIGAN AND REPRODUCTIVE
EPIDEMIOLOGIST STUDYING
ENDOMETRIOSIS ALMOST 30 YEARS
NOW FOCUSSING ON LONGITUDINAL
DISCOVERIES AND THE AFFECTS OF
ENDOMETRIOSIS ACROSS A WOMAN'S
LIFE COURSE.
>> I'M SUSIE ASSINE AND CARING
FOR PATIENTS WITH CHRONIC PELVIC
PAIN AND ENDOMETRIOSIS AND
SHIFTED INTO CLINICAL RESEARCH
EARLY IN THE COURSE TO TRY TO
HELP US BETTER UNDERSTAND WHY IS
IT THAT WOMEN WITH ENDOMETRIOSIS
SUFFER FROM PAIN AND BETTER
STRATEGIES TO TRY TO HELP THEM
GET A BETTER QUALITY OF LIFE.
>> FANTASTIC.
THANK YOU.
AND RIDHI.
>> I'M CO-FOUNDER AND CEO OF
NEXT GEN JANE.
WE'RE A START-UP BUILDING
NON-INVASIVE MENSTRUAL
DIAGNOSTICS.
ONE OF THE FIRST CONDITIONS
WE'RE LOOKING AT IS
ENDOMETRIOSIS AND HAVE BEEN
WORKING ON IT CLOSE TO A DECADE.
PLEASURE TO BE HERE.
>> I HOPE EVERYONE IN THE
AUDIENCE IS EXCITED TO HEAR WHAT
THESE FANTASTIC WOMEN HAVE TO
SAY ABOUT ENDOMETRIOSIS.
WE'LL GIVE THEM EACH 10 MINUTES
TO PRESENT AND A SHORT TWO TO
THREE MINUTES FOR POIGNANT
QUESTIONS AFTER THE
PRESENTATIONS AND AFTER ALL THE
SPEAKERS HAVE GONE WE'LL HAVE A
ROUNDTABLE DISCUSSION.
WE WILL VERY MUCH HOPE TO BE
SEEING ALL THE QUESTIONS FROM
OUR AUDIENCE AND BE ABLE TO
BRING YOUR QUESTIONS FORWARD TO
THESE AMAZING SPEAKERS.
SO THAT WILL BE MY GOAL LATER ON
SO PLEASE AS YOU ARE LISTENING
TO TALKS FEEL FREE TO PUT YOUR
QUESTIONS IN THE CHAT IN THE
Q&A.
I WILL START WITH OUR FIRST
SPEAKER, MANY OF YOU IN OUR
AUDIENCE AND COMMUNITY ARE
PATIENTS WITH ENDOMETRIOSIS AND
HAVE A LIVED EXPERIENCE WITH
THIS CONDITION.
WE WANTED TOE MAKE SURE THAT WE
KICK OFF THE DISCUSSION WITH AN
UNDERSTANDING THAT'S WHAT
UNDERSTANDS ALL OF US.
THAT'S WHAT BRINGS EVERY
CLINICIAN AND SCIENTIST AND
EVERYONE AT NIH TOGETHER ON THE
TOPIC IS THE UNDERSTANDING OF
THIS LIVED EXPERIENCE AND HOW WE
WANT TO IMPROVE THAT FOR THE
AMERICAN PUBLIC.
SO STARTING OFF WE WILL HEAR
FROM DIANA FALZONE AS YOU HEARD
IS A JOURNALIST IN REAL LIFE AND
JOINS US AS THE ENDOMETRIOSIS
FOUNDATION OF AMERICA
AMBASSADOR.
>> THANK YOU.
GOOD AFTERNOON.
THANK YOU TO THE NIH, THE WHITE
HOUSE WOMEN'S HEALTH RESEARCH
INITIATIVE AND ESTEEMED PANEL
FOR INVITING ME TO BE PART OF
THE CONVERSATION OF
ENDOMETRIOSIS.
FOR THOSE JUST JOINING I'M DIANA
FALZ
FALZONE HOST OF ENDO-TV AND
JOURNALIST AND HERE TO WORK WITH
YOU AND EXPLORE WITH THE
COMMUNITY CAN SUPPORT AND
ADVANCE THE NIH'S INITIATIVE.
I'LL SHARE A BIT ABOUT MY
JOURNEY AS A WAY TO ILLUSTRATE
WHAT IT CAN BE LIKE LIVING WITH
THE DISEASE AND HURDLES THAT CAN
BE POTENTIALLY ENCOUNTERED.
MY STORY I HOPE IS REFLECTIVE OF
MANY OTHERS WHO HAVE
ENDOMETRIOSIS.
I WAS DIAGNOSED IN 2016 AT 32
YEARS OLD WITH ENDOMETRIOSIS AND
INFERTILITY AFTER SUFFERING FROM
HORRIBLE MENSTRUAL CYCLES SINCE
I WAS 11.
DOCTORS TOLD ME IT WAS PART OF
BEING A WOMAN AND SOME HAD IT
WORSE THAN OTHERS.
IT WAS NEVER DEEMED A MEDICAL
CONDITION OR ILLNESS.
I WAS TOLD AT ONE POINT IT WAS
JUST BAD LUCK.
DEBILITATING PAIN, VOMITING,
HEAVY BLEEDING FOR SOMETIMES 14
DAYS, OVARIAN CYSTS THAT WOULD
RUPTURE, LOW-GRADE FEVERS.
ALL THESE ABNORMAL SYMPTOMS WERE
NOT A CONCERN IT WAS JUST A
WOMAN'S BAD LUCK.
FINALLY AT 32 A DOCTOR ACTIVELY
LISTENED AND TOOK ME SERIOUSLY
AND THE SUSPICION THAT I COULD
HAVE ENDOMETRIOSIS LET TO MY
ENDO AND INFERTILITY DIAGNOSIS.
ENDOMETRIOSIS IS A LEADING CAUSE
OF INFERTILITY.
FOR ALL THOSE YEARS I WAS NOT
UNLUCKY, I WAS SICK.
I WAS NOT ALONE.
I WOULD GO ON TO HAVE MULTIPLE
EXITION -- EXCISION SURGERIES
AND I WAS FORTUNATE TO HAVE A
CHILD.
DURING A C SESSION I MHEMORRHAGD
TABLE.
ADDS I BROUGHT MY NEWBORN INTO
THE WORLD I WASN'T SURE IF MY
LIFE WAS SLIPPING AWAY.
IT WAS TERRIFYING.
I RECEIVED BLOOD TRANSFUSIONS
AND MADE A FULL RECOVERY,
THANKFULLY.
I LATER LEARNED A UTERINE
PROCEDURE CAN BE BETTER FOR
SOMEONE WITH ENDOMETRIOSIS.
SEVEN MONTHS AFTER GIVING BIRTH
TO MY SON I ALMOST WENT INTO
KIDNEY FAILURE DUE TO LESIONS
AND FIBROSIS STRANGLING MY
URETERS A MEMBER OF THE SURGICAL
TEAM SAID GOOD THING YOU CAME IN
WHEN YOU DID.
IF YOU WAITED A COUPLE MORE
WEEKS YOU WOULD HAVE BEEN ON
DIALYSIS.
WEEKS PRIOR I HAD LOWER BACK
PAIN IN THE FLANK AREA.
I CHOCKED IT UP TO A MUSCLE PULL
BUT IT BEGAN TO THROB MORE EVERY
DAY AND EXPERIENCED A LOW GRADE
FEVER AND CHILLS AND A DOCTOR
TESTED ME FOR A UTI.
THE TESTS WERE NEGATIVE.
WE CHOCKED IT UP TO PROBABLY
BEING A TIRED NEW MOM WHO
PERHAPS PULLED A MUSCLE IN MY
BACK UNKNOWINGLY.
I ALSO HELD ON TO THE MYTH
ENDOMETRIOSIS WOULD NOT RETURN
TO QUICKLY AFTER HAVING A BABY.
THE SYMPTOMS KEPT PERSISTING.
I WAS NERVOUS.
I SPOKE TO A FRIEND WHO HAD
ADVANCED ENDOMETRIOSIS AND SHE
ENCOURAGED ME TO SPEAK TO MY
ENDO SURGEON ABOUT MY SYMPTOMS.
AT THIS POINT I WAS ALARMINGLY
SICK AND MY SURGEON TOLD ME TO
GO TO THE E.R.
HIS URGING AND BEING ABLE TO
RECOGNIZE THAT MY SYMPTOMS COULD
BE ENDORELATED IS WHAT SAVED MY
KIDNEYS.
I WAS IN SURGERY WITHIN A COUPLE
HOURS AFTER A PELVIC MRI WITH
CONTRAST.
I WAS FORTUNATE TO HAVE
PROXIMITY TO BE TO DOCTORS AND
HEALTH INSURANCE THAT COVERED
MOST THE MEDICAL CARE I NEEDED.
SOMETIMES I THINK ABOUT THE WHAT
IFs.
WHAT COULD HAVE HAPPENED TO ME
OR MY SON IF I WERE NOT HEALTHY
ENOUGH TO TAKE CARE OF HIM AND
THAT STAYS WITH ME.
I LIVE IN FEAR OF MY
ENDOMETRIOSIS ALMOST EVERY DAY.
A DOCTOR ONCE TOLD ME IF YOU
HAVE ENDOMETRIOSIS, YOU ARE A
TICKING TIME BOMB.
YOU'LL NEVER KNOW WHEN YOU'RE
GOING TO GET SICK NEXT.
IN THE UNITED STATES THE AVERAGE
DELAY IN DIAGNOSIS FOR EPIDEMIC
IS 7 TO 12 YEARS.
IT'SE ESTIMATED 1 IN 10
INDIVIDUALS BORN WITH A UTERUS
HAVE EPIDEMIC AND UP TO
TWO-THIRDS ADOLESCENTS WHO
REPORT SEVERE OR PELVIC PAIN
HAVE ENDOMETRIOSIS STARTING
YOUNG.
IT CAN AID IN EARLIER DETECTION
OF THE DISEASE.
I WISH A DOCTOR OR EDUCATOR OR
SOMEONE HAD MENTIONED
ENDOMETRIOSIS AS A YOUNG GIRL.
PERHAPS YEARS OF PAIN AND COSTLY
SURGERIES AND IVF COULD HAVE
BEEN AVOIDED.
AGAIN, I WAS FORTUNATE TO HAVE
ACCESS TO CARE.
THAT IS NOT THE CASE FOR MANY
OTHERS.
I SHARE MY ENDOMETRIOSIS STORY
BECAUSE AS PART OF THIS
COMMUNITY I FEEL A DEEP
RESPONSIBILITY TO HELP AMPLIFY
THE VOICES OF OTHERS LIVING WITH
THIS ILLNESS.
I DISCOVERED ENDOFOUND AND
ACTIVELY ENGAGED IN 2017.
AND GRATEFUL TO THE CO-FOUNDERS
FOR THE LANDMARK WORK THEY'VE
DONE AND CONTINUED TO DO.
I MADE A PROMISE WHEN I WAS
DIAGNOSED WITH ENDO I WOULD HELP
TO ADVOCATE FOR BETTER TREATMENT
OPTIONS AND HOPEFULLY A CURE FOR
THIS INSIDIOUS DISEASE.
WHILE ENDOMETRIOSIS IS GETTING
MORE RECOGNITION, IT'S STILL
CONSIDERED A BENIGN ILLNESS.
PERHAPS IT'S SIMPLY SEMANTICS
BUT A DISEASE THAT HURTS OUR
QUALITY OF LIFE, RELATIONSHIPS,
EDUCATION, MENTAL HEALTH AND
ROBS US POTENTIAL OF OUR BODILY
ORGANS IS NOT A SMALL BURDEN.
THE DISEASE CAN HAVE AN IMPACT
ON MENTAL HEALTH.
UP TO 87% OF THOSE WITH
ENDOMETRIOSIS EXPERIENCE
SYMPTOMS OF ANXIETY AND
DEPRESSION.
IT CERTAINLY DOES NOT FEEL
BENIGN.
ENDOMETRIOSIS CAN BE A CHRONIC
LIFE LONG ILLNESS.
THOSE WITH ENDOMETRIOSIS NEED
THE MEDICAL COMMUNITY AT LARGE
TO NOT MINIMIZE THE LITERAL AND
FIGURATIVE COST.
HIGHLIGHTS SHOW THE BURDEN
ANNUAL COST IN THE UNITED STATES
ESTIMATED IN THE BILLIONS OF
DOLLARS.
PEOPLE WITH ENDOMETRIOSIS CAN
FACE UP TO THREE TIMES HIGHER
HEALTH CARE COST AND LOST
PRODUCTIVITY COMPARED TO THOSE
WITHOUT THE DISEASE.
ENDOMETRIOSIS SYSTEMS BEGIN
DURING ADOLESCENTS SO EDUCATING
USE IS CRUCIAL IN THE TREATMENT
AND PAIN OF ENDOMETRIOSIS THAT
RESULTS IN YEARS OF UNNECESSARY
PAIN AND SUFFERING.
FINDING PROPER TREATMENT,
ADVOCATING FOR THEIR NEEDS AND
MAKING WELL INFORMED HEALTH
CHOICES CAN ENHANCE THEIR DAILY
LIVE.
I'VE SPOKEN TO DOZENS OF
INDIVIDUALS WHO SUFFERED FROM
PELVIC ENDOMETRIOSIS AND SOME
HAVE LOST KIDNEY FUNCTION OR
HAVE HAD REPRODUCTIVE ORGANS
REMOVED BEFORE REALIZING THEIR
PARENTHOOD.
IT CAN LEAVE YOU FEELING
HOPELESS, YET THERE'S HOPE
BECAUSE WE ARE HERE TODAY HAVING
THIS PIVOTAL CONVERSATION WITH
PEOPLE WHO CAN MAKE A
DIFFERENCE.
KNOWLEDGE IS POWER ESPECIALLY
WHEN IT COMES TO UNDERSTANDING
ENDOMETRIOSIS AS A PATIENT.
EMPOWERS INDIVIDUALS TO
RECOGNIZE THE SIGNS AND SYMPTOMS
OF THE ILLNESS EARLY POTENTIALLY
PREVENTING FURTHER PROGRESSION.
WITH KNOWLEDGE PATIENTS CAN
ADVOCATE FOR THEMSELVES AND SEEK
APPROPRIATE TREATMENT AND MAKE
INFORMED DECISIONS ABOUT THEIR
HEALTH ULTIMATELY IMPROVING
THEIR QUALITY OF LIFE.
I'M ONLY ONE VOICE.
I'M ONLY ONE ENDOMETRIOSIS STORY
AMONG THOUSANDS BUT TOGETHER
WE'RE STRONGER.
TOGETHER WE CAN MAKE A
DIFFERENCE.
I'M GRATEFUL TO THOSE IN THE
ENDOMETRIOSIS COMMUNITY WHO LEND
THEIR VOICES, RESOURCES AND
SUPPORT TIME AND TIME AGAIN.
I'M GRATEFUL TO EACH OF YOU
PRESENT TODAY.
WE SHARE A COMMON GOAL TO STRIVE
FOR ERADICATING THE DELAY IN
DIAGNOSIS IMPROVING TREATMENTS
OPTIONS AND CONDUCTING MORE
RESEARCH TO LEAD TO, I HOPE,
ERADICATING THIS ILLNESS.
TOGETHER WE CAN TRANSFORM THE
LIVE OF MILLIONS AFFECTED BY
ENDOMETRIOSIS BY UNITING OUR
EFFORTS AND INVESTING IN
RESEARCH WE CAN MAKE STRIDES FOR
THOSE SUFFERING FROM THIS
DEBILITATING DISEASE.
THANK YOU FOR YOUR TIME.
>> I HOPE YOU CAN SEE THE
RESPONSE FROM THE AUDIENCE
INCREDIBLY POSITIVE.
YOU'RE SAYING WORDS MANY OF THE
PEOPLE IN THE ROOM HAVE SAID
THEMSELVES, FELT THEMSELVES.
SO JUST FROM THE AUDIENCE, I
THINK YOU'RE INSPIRING TO THINK
ABOUT THE ENDOMETRIOSIS
COMMUNITY AND HOW BENEFICIAL
THAT IS AND HOW THEY MIGHT START
THAT OUT.
I ALSO WANT TO CONGRATULATE YOU
FOR BEING INCLUSIVE OF THE TRANS
AND NON-BINARY FOLKS IN OUR
COMMUNITY.
AS WE KNOW ANYONE WITH A UTERUS
CAN SUFFER FROM ENDOMETRIOSIS.
I WANTED TO SPIN OFF ON MAYBE
ONE QUESTION BEFORE WE TURN TO
OUR NEXT SPEAKER.
WHAT WOULD YOU SAY TO THESE
PEOPLE IN RURAL COMMUNITIES WHO
WANT TO JUST GET STARTED FINDING
OTHERS LIKE THEM OR STARTING
SUPPORT GROUP.
DO YOU HAVE ADVICE THERE.
>> SOCIAL MEDIA IS LIKE AN EVIL
MISTRESS AND GOOD AND BAD.
FOR ME THE REASON I FOUND
ENDOFOUND IS BECAUSE OF
INSTAGRAM.
I SAW A STORY AND IT CONNECTED
ME TO THE WEBSITE.
I WAS ABLE TO CONNECT WITH
OTHERS THAT HAD ENDOMETRIOSIS.
THAT'S WHERE I LEARNED AND
LEARNED ABOUT THINGS NOT
NECESSARILY TALKED ABOUT SO
MUCH.
AND IF YOU'RE NOT IN A MAJOR
CITY WHERE YOU MAY BE ABLE TO
REACH OUT OR HAVE
ENDOSPECIALISTS THAT CAN SPEAK
TO YOU.
I THINK IT'S IMPORTANT TO HAVE
THAT SUPPORT SYSTEM.
I HAVE FRIENDS ALL OVER THE
UNITED STATES AND WE COLLABORATE
FROM MENTAL HEALTH TO OUR
DISEASE SYMPTOMS.
>> FANTASTIC.
THANK YOU SO MUCH FOR SHARING
THAT.
SO WE WILL HAVE YOU BACK AT THE
END OF THE SESSION TO TALK WITH
OUR ENTIRE PANEL.
ALL THOSE IN THE AUDIENCE WITH
LINGERING QUESTIONS PUT THOSE IN
THE Q&A AND WE'LL BRING HER BACK
TO DISCUSS THOSE LATER.
THANK YOU, DIANA.
NOW WE'LL TURN TO DR. STACEY
MISSMER WITH HER TALK
ENDOMETRIOSIS WHOLE HEALTH
ACROSS WHOLE LIVES.
>> THANK YOU.
IT'S ALWAYS A PLEASURE TO FOLLOW
DIANA AND THE AMAZING WORK SHE
AND THE ADVOCATES ARE DOING.
I'M GOING TO TALK ABOUT WHERE WE
ARE IN TERMS OF RESEARCH
DISCOVERY AT A 10,000 FOOT LEVEL
IN TERMS OF SEVERAL DIFFERENT
ASPECTS OF ENDOMETRIOSIS.
SO AS WE KNOW IT'S DEFINED BY
ENDOMETRIAL TISSUE OUTSIDE THE
CAST AND CAN AFFECT THE LUNG,
HEART AND BRAIN AND HAVE
MULTI-SYSTEM IMPACT.
IT'S ESTROGEN DEPENDENT AND
PROGESTERONE RESISTANT AND AN
INFLAMMATORY CONDITION.
WE KNOW THE STANDARD ESTIMATE IS
1 IN 10 WOMEN.
I'LL COME BACK TO THAT IN A
MOMENT AVERAGING MORE THAN 200
MILLION WORLDWIDE AFFECTED WE
KNOW IT'S A LONG PATHWAY FOR
MOST PATIENTS TO DIAGNOSIS AND
THERE'S CURRENTLY NO CURE AND A
THIRD OF WOMEN FEEL THE CURRENT
TREATMENT IS NOT EFFECTIVE.
WHEN WE THINK WITH THE
PREVALENCE OF THE 69 STUDIES TO
DATE THE RANGE LOOKS AT CLINIC
POPULATIONS TO NATIONAL
REGISTRIES RANGES WIDELY FROM 1%
TO 72%.
SO WE'RE NOT CLEAR ON THE
ABSOLUTE NUMBER OF GIRLS AND
WOMEN WHO HAVE ENDOMETRIOSIS.
WE KNOW THERE ARE SEVERAL
PATHWAYS AGAIN AS DIANA
DESCRIBED SO IMPACTFUL THERE ARE
PATHWAYS WHERE THE SYMPTOMS OF
ENDOMETRIOSIS ARE NORMALIZED AND
DISMISSED WHEN PATIENTS PRESENT
TO DISCUSS THE SYMPTOMS.
WE KNOW MANY DON'T HAVE ACCESS
TO CARE TO ADDRESS THESE
SYMPTOMS.
WE KNOW SOME DON'T RESPOND TO
STANDARDS OF TREATMENT AND ARE
LEFT WITH NO FURTHER AAVENUES TO
PURSUE AND SOME HAVE SUCCESSFUL
AND PURE TREATMENT AND THEREFORE
NOT GO ON TO A FURTHER ACCURATE
DIAGNOSIS OF ENDOMETRIOSIS.
WHAT WE FOCUSSED ON FOR
ENDOMETRIOSIS ACROSS A WOMAN'S
LIFE COURSE IS PRIMARILY WE'VE
LOOKED AT THE PERIOD OF
ADULTHOOD.
MOSTLY WOMEN IN THEIR 30s AND
40s.
HOWEVER WE KNOW THE SYMPTOMS
MOST COMMONLY BEGIN IN
ADOLESCENCE AND CONTINUE PAST
MENOPAUSE.
WE KNOW RISK FACTORS AS WE'RE
TRYING TO DETERMINE WHAT ARE THE
CAUSAL PATHWAYS THAT CAN BE
INTERVENED UPON, POSSIBLY
PREVENTED AND CERTAINLY
CAPITALIZED FOR SUCCESSFUL
TREATMENT VARY BY WINDOW OF
EXPOSURE.
CONSISTENTLY I'LL GO THROUGH
THESE SUPERFICIALLY.
THOSE WITH A LOWER BIRTH WEIGHT
HAVE HIGHER DIAGNOSIS AND LOWER
AGE OF MENARCHE AND UNDER
STUDIED IS PHYSICAL ACTIVITY AND
SMOKING EXPOSURE RELATED TO
ENDOMETRIOSIS.
THE MOST STUDIED IS IN ADULT
EXPOSURES.
CONFIRMED RIGOROUS FINDINGS
AROUND SHORTER MENSTRUAL CYCLE
LENGTHS, MORE FREQUENT PERIODS,
LOWER BODY MASS INDEX AND THEN
WE HAVE A LOT OF INCONSISTENT
STUDY AND UNDER STUDIED
EVALUATIONS.
SO THIS IS WHERE MOST THE
DIETARY RELATIONSHIPS BETWEEN
ENDOMETRIOSIS AND SYMPTOMS FALL.
WE KNOW AND THIS HAS BEEN
IMPORTANT EMERGING INFORMATION
FOCUSSED ON THE LAST FEW YEARS.
WOMEN WITH ENDOMETRIOSIS HAVE A
DIVERSE PRESENTATION AND
EXPERIENCE.
IF WE LOOK AT SYMPTOMS, THE
MAJORITY ARE EXPERIENCING
CHRONIC PAIN OFTEN,
DYSMENORRHEA, PAIN DURING
MENSTRUATION AND OTHER TIMES OF
THE MENSTRUAL CYCLE, PAINFUL
DEFECATION AND HIGH PREVALENCE
OF FATIGUE.
WE ALSO KNOW THAT THE
PRESENTATION OF ENDOMETRIOSIS
ITSELF AND WHAT WE SEE IN THE
LESIONS IS DIFFERENT FROM ONE
PATIENT TO TO ANOTHER.
THERE'S PERITINEAL AND THE CYSTS
RELATED TO ENDOMETRIOSIS.
WHILE WE LOOK AT THE LESION
TYPES IT GIVES US AN IMPORTANT
TUND TO ADVANCE DISCOVERY THAT
IMPROVES DIAGNOSIS AND
TREATMENT.
TO THE DATA COMES FROM
REVOLUTIONARY DISCOVERY IN THE
SUBPHENOTYPES.
IN THE GENETICS REALM WE KNOW WE
FOUND 42 GENES ASSOCIATED
HOWEVER, WHEN WE LOOK MORE
CLOSELY IT'S GENES ASSOCIATED
WITH OVARIAN CYSTS.
NEW DISCOVERIES ARE LOOKING TO
FIND GENES THAT MAY BE SPECIFIC
TO SUPERFICIAL AND DEEP LESIONS
TO HELP UNDERSTAND DIAGNOSTICS
AND ALSO THE CAUSAL PANEL WAYS
TO BE INTERVENED UPON.
WE HAVE EMERGING INFORMATION
AROUND PROTEIN PROFILES.
RECENTLY THERE'S BEEN
DISCOVERIES THE PROTEIN PATHWAYS
ASSOCIATED WITH ENDOMETRIOSIS
DIFFER BY THE TYPE OF PAIN
SYMPTOMS PATIENTS ARE
EXPERIENCING.
THEY ALSO DIFFER BY RESPOND TO
CURRENT TREATMENTS.
THIS IS A REVOLUTIONARY AREA WE
EXPECT LEAPS AND BOUNDS FORWARD
IN THE NEXT FIVE YEARS OR SO.
AND WE KNOW THOSE WITH
ENDOMETRIOSIS EXPERIENCE HIGH
RISK OF HAVING OTHER CONDITIONS.
SO WE KNOW THERE'S HIGHER RISK
OF ADENO MYOSIS AND HIGHER RISK
OF CO-OCCURRENCE WITH UTERINE
FIBROIDS AND THOSE WITH
ENDOMETRIOSIS HAVE A HIGHER RISK
OF EXPERIENCING INFERTILITY.
ALSO WE HAVE QUITE A BIT OF
EMERGING INFORMATION AROUND THE
OTHER SYMPTOMS AND IMPACT OF
ENDOMETRIOSIS BEYOND
REPRODUCTIVE AND GYNECOLOGIC
SYMPTOMS.
WE'RE 15 YEARS IN NOW TO TALKING
ABOUT ENDOMETRIOSIS AS A
MULTI-SYSTEMIC IMPACTFUL
CONDITION.
AND THERE'S A LOT OF BIOLOGIC
AND CLINICAL UNDER PINNINGS TO
WHY THERE WOULD BE LARGE SCALE
LIFE LONG IMPACTS OF
ENDOMETRIOSIS.
SO CHANGES IN THE INFLAMMATORY
MILIEU, CHRONIC INFLAMMATION,
OXIDATIVE STRESS, STEM CELL
ACTIVITY CHANGE AND COAGULATION
AND MALIGNANT TRANSFORMATIONS
AND SHARED GENETICS AND SHARED
PATHWAYS IN PHYSIOLOGY BETWEEN
ENDOMETRIOSIS AND OTHER
CONDITIONS AND SHARED RISK
FACTORS AND OF PARTICULAR
INTEREST ARE WHAT WE UNDERSTAND
ABOUT THE BIOLOGY OF THOSE RISK
FACTORS SO THAT AGAIN WE CAN
INTERVENE UPON THEM AND PREVENT
THEM AND ALSO SO WE CAN
UNDERSTAND BETTER THE BIOLOGY OF
ENDOMETRIOSIS AND PERHAPS
DEVELOP NEW TARGETED
PERSONALIZED TREATMENTS.
SO TO DATE THERE ARE CONDITIONS
IN MOST SYSTEMS OF THE HUMAN
BODY RELATED TO ENDOMETRIOSIS.
MANY CHRONIC OVERLAPPING PAIN
CONDITIONS, BLADDER PAIN,
IRRITABLE BOWEL SYNDROME AND
IMPACTS ON THE CARDIOVASCULAR
AND CEREBRAL VASCULAR SYMPTOMS.
INCREASED RISK OF EARLIER
MENOPAUSE.
SEVERAL TYPE OF CANCERS
PARTICULARLY THYROID AND SMALL
INCREASED RISK OF BREAST CANCER,
OVARIAN CANCER IS THE MOST WELL
KNOWN ASSOCIATION.
ALSO ASTHMA, ECZEMA AND EMERGING
INFORMATION ABOUT LONG COVID AND
THE IMPACT OF COVID INFECTION ON
THE LONGER TERM HEALTH OF THOSE
WITH ENDOMETRIOSIS.
THE KEY ISSUES WE WANT IT FOCUS
IN TERMS OF CHRONIC CONDITIONS
MANY EVEN MOST STILL REMAIN RARE
AND INFREQUENT AND WOMEN WITH
ENDOMETRIOSIS HAVE A HIGHER
RISK.
WE NEED TO UNDERSTAND BETTER WHO
IS AT HIGHER RISK.
WE NEED TO UNDERSTAND THE
BIOLOGY AND ENVIRONMENTAL AND
POTENTIALLY MODIFIABLE FACTORS
INFLUENCING THE HEALTH AND
WELLNESS OF THOSE WITH
ENDOMETRIOSIS TO BETTER PREDICT
WHO IS AT RISK FOR OTHER
CONDITIONS AND HELPFULLY
PREVENTION AND AVERAGEMENT OF
NOVEL TREATMENTS.
WE ALSO REALLY HAVE TO SOLIDIFY
THAT ENDOMETRIOSIS IS IMPORTANT
BEYOND THE GYNECOLOGIST'S CARE
AND BEYOND GYNECOLOGY FOCUSSING
ON FUNDING AGENCIES AND RESEARCH
DISCOVERY AND REALLY FOR THE
WHOLE HEALTH OF THOSE WITH
ENDOMETRIOSIS ACROSS THEIR WHOLE
LIVES.
AGAIN THE CRITICAL WINDOW IS
ACROSS THE LIFE COURSE.
THERE ARE SO MANY NEW AND
EXCITING ADVANCEMENTS I KNOW
DR. ASSINNIE WILL TALK ABOUT AND
I WANT TO REMIND THOSE HERE THAT
THE NEXT MEETING HAS AN OPENING
FOR ABSTRACT SUBMISSIONS NOW.
WE'LL OCCUR IN MAY.
THIS IS AN INTERNATIONAL MEETING
EVERY TWO YEARS INCLUDING
CLINICIANS, SCIENTISTS AND
PATIENTS AND PATIENT ADVOCATES
TO CONTINUE CUTTING-ONLY
DISCOVERY FOR THOSE EXISTING
WITH AND SURVIVING AND THRIVING
WITH ENDOMETRIOSIS.
THANK YOU.
>> THANK YOU, STACEY.
CAN I ASK YOU BRING UP YOUR
DISCLOSURE SLIDE WHILE WE
DISCUSS.
I WANT IT SEE ALL THE GOOD WORK
YOU DO.
>> LET ME GO BACK.
YOU DO A FANTASTIC JOB OF
BRINGING ACROSS ENDOMETRIOSIS IS
A WHOLE BODY CONDITION.
NOT JUST GYNECOLOGIC.
IT SEEMS LIKE THERE'S SOMEWHAT
OF A MISUNDERSTANDING IN SOME
CONTEXT THERE.
>> SO, I THINK IT'S A BATTLE
THAT NEEDS TO BE FOUGHT IN THAT.
IF IT WERE STRICTLY A
GYNECOLOGIC CONDITION AND WASN'T
IMPACTING PEOPLE'S LIVES THE WAY
IT IS DOESN'T CHANGE HOW
IMPORTANT AND IMPACTFUL AND HOW
MUCH WE NEED TO FIGHT FOR
ATTENTION AND DISCOVERY AND
INFECTION ON THE CONDITION.
THE REALITY THAT IS BROADER ON
THAT THIS, WE'RE HOPING THE
INFORMATION IT BRINGS MORE
INTEREST AND GREAT MINDS AND
DISCIPLINES TO THE TABLE BUT
ALSO GIVES PEOPLE WITH
ENDOMETRIOSIS A GREATER POINT OF
CONNECTION WITH THE HEALTH CARE
SYSTEM AND POTENTIALLY AGAIN
MAXIMIZING THEIR FULL WELLNESS
ACROSS THEIR WHOLE LIVES.
THAT IS CRITICAL.
AND I THINK THIS ALSO HIGHLIGHTS
THE LACK OF CURIOSITY WE HAVE
ACCEPTED FOR FEMALE-SPECIFIC
CONDITIONS AND THAT THEY HAVE,
UNFORTUNATELY, RECEIVED LESS
ATTENTION AND LESS INTEREST FROM
THE BROADER FIELD AND
DISCIPLINES AND THAT'S
ABSOLUTELY ESSENTIAL.
THE FACT IT IS RELATED TO MANY
MANY HEALTH SYSTEMS, MANY
BIOLOGICAL PATHWAYS HELPS
INCREASE THE CURIOSITY INTEREST
AND FOCUS ON PEOPLE WITH
ENDOMETRIOSIS IT'S A WIN FOR
EVERYONE.
>> FANTASTIC.
THANK YOU SO MUCH.
THERE'S REALLY GOOD QUESTIONS IN
THE CHAT I WANT TO GET TO BUT I
WANT TO GIVE IT TO OUR PANEL
OVER ALL.
I'LL BRING YOU BACK AT THE END
TO TALK THROUGH SOME OF THE
QUESTIONS.
>> THANK YOU.
>> THANK YOU, STACEY.
SO WE'LL MOVE NEXT TO DR. SUSIE
ASSANIE TALKING ABOUT AND A HALF
FW
-- NAVIGATING ENDOMETRIOSIS
COMPLEXITIES IN NAVIGATING LIFE.
>> IT'S AN HONOR TO BE HERE AND
TO BE INCLUDED IN THE PANEL.
I'M GOING TO FOCUS SPECIFICALLY
ON EVALUATION AND MANAGEMENT OF
PAIN AND THE MORE MODERN OF PAIN
MECHANISMS IN PATIENTS WITH
ENDOMETRIOSIS.
I WANT TO ECHO WHAT CANDACE SAID
AND WHILE I MAY USE THE WORD
WOMEN OUT OF EASE AND FLOW FOR
THE TALK, ENDOMETRIOSIS IS A
CONDITION THAT CAN AFFECT ANY
PERSON BORN WITH A UTERUS AND
CAN AN ACTIVE DISEASE EVEN WHEN
TAKING TESTOSTERONE AND OTHER
HORMONE MANAGEMENT IN THE BINARY
POPULATION.
SO THESE ARE MY DISCLOSURES.
DIANA GAVE A NICE AND
BEAUTIFULLY ARTICULATED SUMMARY
OF THE IMPACT THAT ENDOMETRIOSIS
CAN HAVE ON PATIENTS WHO SUFFER
FROM THE CONDITION.
I'M GOING TO NOT REVIEW THAT BUT
JUST DIVE STRAIGHT INTO THE
OBJECTIVES PER MY TALK.
I'LL FIRST DISCUSS THE
VARIABILITY IN THE CLINICAL
PRESENTATION OF PATIENTS WITH
ENDOMETRIOSIS.
THEN REVIEW THE MECHANISMS THAT
CAN LEAD TO CHRONIC PAIN WITH A
PARTICULAR EMPHASIS CALLED ON
NOCIPLASTIC PAIN DISORDERS AND
UNDERSTANDING AND IDENTIFYING
PAIN MECHANISMS IN THE TREATMENT
OF PATIENTS WITH ENDOMETRIOSIS
WITH THE GOAL OF ENHANCING
PATIENT CARE.
THE CARDINAL SYMPTOM OF
ENDOMETRIOSIS AS OTHERS HAVE
ALLUDED TO IS IT'S PELVIC PAIN.
APPROXIMATELY 70% OF PATIENTS
WITH ENDOMETRIOSIS EXPERIENCE
PELVIC PAIN AND DYSMENORRHEA
PAIN WIN PERIODS AND PAIN WITH
VAGINAL PENETRATION.
AND YOU CAN HAVE CONSTIPATION
AND BLOATING AND A THIRD CAN
HAVE INFERTILITY AND A THIRD CAN
HAVE PAIN WITH BOWEL MOVEMENT.
ABOUT 20% OF PATIENTS WITH
ENDOMETRIOSIS PRESENT WITH THE
FIRST SYMPTOM OF BEING AN
OVARIAN MASS AND PAIN WITH
URINATION.
AND IMPORTANT TO UNDERSTAND AS
RAY CLINIC A CLINICIAN IS A CON.
THOSE THAT HAVE ALL THREE,
PELVIC PAIN, DYSMENORRHEA AND
DYSPAREUNIA AND EVERY
COMBINATION EXISTS.
AND WHEN YOU LOOK AT THE PAIN
THREES A WIDE VARIATION IN THE
EXTENT OF DISEASE WE SEE.
IN THE PICTURE ON THE LEFT IS A
PICTURE OF STAGE 1 OR
SUPERFICIAL ENDOMETRIOSIS THAT
AFFECTS THE LIGAMENTS BEHIND THE
UTE
UTERUS.
THE MIDDLE IS STAGE 2 AND 3 AND
THE STRUCTURES ARE THE OVARIES
AND FALLOPIAN TUBES COME CLOSE
AND YOU SEE SCARRING IN THE
AREA.
THIS IS AN EXAMPLE OF A PATIENT
WITH STAGE 4 ENDOMETRIOSIS.
YOU CAN'T SEE ALL THE ANATOMY
WITHOUT LOOKING AT A VIDEO.
AND YOU CAN SEE THE BACK AND YOU
SEE THE ANATOMIC DISEASE TO MORE
SEVERE DISEASE THE SYSTEM
PROFILE SHOULD OFTEN MATCH THAT
AND SO LOGIC WOULD HAVE IT THE
PATIENT WOULD HAVE THE LEAST
AMOUNT AND THE LOWEST FREQUENCY
OF PAIN WHEREAS THE PATIENT WITH
THE MOST SEVERE SCAR TISSUE THE
BIGGEST ANATOMIC BURDEN OF
ENDOMETRIOSIS WOULD HAVE THE
MOST SEVERE PAIN.
BUT AS ANY PATIENT AS WELL AS
ANY CLINICIAN THAT SEES PATIENTS
WITH ENDOMETRIOSIS KNOWS ANY
COMBINATION IS POSSIBLE AND NOT
UNCOMMON FOR PATIENTS WITH
MINIMAL BURDEN OF DISEASE TO
HAVE SEVERE LIFE-IMPACTING PAIN
AND WE HAVE SEEN AS CLINICIANS
PATIENTS WHO HAVE QUITE SEVERE
ENDOMETRIOSIS BUT HAVE LITTLE TO
NO PAIN AT ALL.
TO ADD TO THE COMPLEXITY
HORMONAL TREATMENT WHICH ARE THE
GOLD STANDARD TREATMENT
THERAPIES TEND TO BE EFFECTIVE
IN THE MAJORITY OF PATIENTS BUT
NOT ALL.
70% OF PATIENTS TREATED WITH
HORMONE THERAPY FIND IMPROVEMENT
IN THEIR SYSTEMS AND 70% WHO
HAVE SURGICAL EXCISION HAVE
IMPROVEMENT.
THIS SEEMS TO BE CONSISTENT
IRRECTI IIVE -- IRRESPECTIVE O
THE DISEASE.
WHY IS THE CARE CHALLENGING AND
I ARGUE INSUFFICIENT.
WE NEED TO BETTER UNDERSTAND WHY
PATIENTS EXPERIENCE PAIN AND HOW
IS IT ENDOMETRIOSIS CAN
CONTRIBUTE TO PAIN?
SO THE MOST PROMINENT SYMPTOM IS
THAT OF PELVIC PAIN.
THE TRADITIONAL AND MOST WILDLY
HELD VIEW IS ENDOMETRIOSIS IS A
NOCICEPTIVE PAIN CONDITION THAT
OCCURS DUE TO THE ACTIVATION OF
LESIONS OF PERIPHERAL NERVES
THROUGH MECHANISMS OF
INFLAMMATION AND INCREASED NERVE
FIBERS THROUGH THE SPINAL CORD
UP TO THE BRAIN AND YOU
EXPERIENCE PAIN.
AND THE OVERWHELMING RESEARCH TO
DATE HAS FOCUSSED ON MECHANISMS
BY WHICH WE CAN SUPPRESS THE
LESIONS AND PAIN IMPROVEMENTS IN
THE VAST MAJORITY OF PATIENT
MZS.
WE KNOW IT'S NOT SUFFICIENT TO
EXPLAIN ALL PATIENTS WITH THE
CONDITION.
SO MODERN UNDERSTANDING OF PAIN
MECHANISMS HELPS US TO
UNDERSTAND THAT THE PAIN IS
ACTUALLY AN OUTPUT OF THE BRAIN.
SO THE BRAIN HAS A POWERFUL
ABILITY TO EITHER AMPLIFY THE
SIGNAL THAT IS COMING FROM THE
PERIPHERY AS WELL AS DAMPEN
SIGNAL COMING FROM THE
PERIPHERY.
THE PAIN ANY GIVEN PERSON
EXPERIENCES ISN'T JUST ABOUT
WHAT'S COMING IN FROM THE
OUTSIDE OF THE BODY TO THE BRAIN
BUT ACTUALLY AN OUTPUT OF THE
BRAIN.
AND PAIN IS THE BALANCE BETWEEN
WHAT'S COMING IN AND WHAT THE
BRAIN DOES TO TURN UP THE SIGNAL
OR TURN DOWN THE SIGNAL.
AND WHAT WE KNOW NOW IS THAT
THERE'S MANY CONDITIONS IN WHICH
THE CENTRAL NERVOUS SYSTEM PLAYS
A VERY IMPORTANT ROLE IN
AUGMENTING AND MAINTAINING THE
PAIN EXPERIENCE.
MORE MODERN TERMINOLOGY IS THE
CONDITIONS ARE REFERRED TO AS
NOCIPLASTIC PAIN CONDITIONS
WHERE THE PAIN IS AMPLIFIED
BEYOND WHAT IS TYPICALLY
EXPECTED FROM THE SIGNAL.
AND THERE'S MANY PAIN SIGNALS.
FIBROMYALGIA IS A CLASSIC
EXAMPLE OF A NOCIPLASTIC
SYMPTOM.
THESE CONDITIONS ARE OFTEN
CHARACTERIZED BY WIDESPREAD
PAIN.
THE PAIN OFTEN PERSISTS EVEN
WHEN THE ORIGINAL SIGNAL FROM
THE BODY HEALS.
THE PAIN SEVERITY IS OUT OF
PROPORTION TO THE PATHOLOGY AND
IN THE PATIENTS WITH NOCIPLASTIC
PAIN CONDITIONS TEND TO HAVE A
HIGHER LIFE TIME OF HISTORY OF
PAIN THROUGHOUT THE BODY AND
MORE COMMON IN FEMALES COMPARED
TO MALES AND THE PAIN IS
EXACERBATED BY STRESSORS.
IT'S CRITICAL TO UNDERSTAND
THESE ARE NOT JUST PAIN
DISORDERS BUT THE CARDINAL
SYMPTOMS OF NOCIPLASTIC PAIN
INCLUDE SYMPTOMS LIKE INCREASED
GENERAL SENSITIVITY TO INTERNAL
SENSATIONS AND STIMULI AND
NOCIPLASTIC PAIN CONDITIONS ARE
ASSOCIATED WITH HIGH LEVELS OF
FATIGUE AND POOR SLEEP AND
CONCENTRATION AND SHORT TERM
MEMORY DIFFICULTIES AND HIGHER
PREPONDERANCE FOR MOOD DISORDERS
SUCH AS ANXIETY AND DEPRESSION.
WHAT DO WE KNOW ABOUT
ENDOMETRIOSIS PELVIC PAIN AS
WELL AS THE BRAIN?
AND WHY SHOULD IT MATTER TO
PATIENTS AS WELL AS PHYSICIANS
LIKE ME?
WE KNOW PATIENTS WITH
ENDOMETRIOSIS AND CHRONIC PELVIC
PAIN DEMONSTRATE MANY
EXPERIMENTAL PAIN AND
NEUROIMAGING FINDINGS WE SEE IN
OTHER NOCIPLASTIC PAIN
CONDITIONS.
INCREASED SENSITIVITY OF PAIN
AND SENSORY STIMULI AND CHANGES
IN BRAIN STRUCTURE AND BRAIN
FUNCTION AND THE CHANGES WE SEE
ARE INDEPENDENT OF THE SEVERITY
OF ENDOMETRIOSIS AND SEE THIS IN
PATIENTS WITH CHRONIC PAIN WITH
AND WITHOUT ENDOMETRIOSIS
IRRESPECTIVE OF THE SEVERITY OF
ENDO.
WE DON'T SEE IT IN THOSE WITH
PAIN FREE ENDOMETRIOSIS.
WHEN YOU LOOK AT THE LESS COMMON
SUB CATEGORY OF PATIENTS WITH
PAIN-FREE ENDOMETRIOSIS WE HAVE
A DIFFERENT FINDING WHERE WE SEE
INCREASED GRAY MATTER VOLUME OF
THE PERIAQUEDUCTAL GRAY INVOLVED
IN DESCENDING THE PAIN OR THE
BRAIN'S ABILITY TO TURN DOWN THE
PAIN SIGNAL FROM THE PERIPHERY.
IT'S POSSIBLE THE ADAPTIVE
CHANGES IN THE BRAIN PLAY BE ONE
OF THE MECHANISMS BY WHICH THESE
PATIENTS OFFSET PERIPHERAL
NOCICEPTIVE INPUT?
WHY DOES THIS MATTER?
HAVE NOCIPLASTIC PAIN IS A RISK
FACTOR FOR DEVELOPING PERSISTENT
PAIN AFTER SURGERY.
WE FOLLOWED PATIENTS UNDERGOING
HYSTERECTOMY FOR CHRONIC PELVIC
PAIN AND WE FOUND PRIOR TO
SURGERY IF A PATIENT HAD HIGHER
MARKERS OF NOCIPLASTIC PAIN THEY
WERE MORE LIKELY TO REPORT
PERSISTENT PAIN 6 MONTHS AFTER
SURGERY AND OTHER GROUP
INCLUDING PAUL YOUNG SHOWED
SIMILAR FINDINGS FOR THOSE
UNDERGOING SURGERY FOR
ENDOMETRIOSIS.
HOW CAN WE FIT THE PIECES
TOGETHER TO ENHANCE PATIENT CARE
AND QUALITY OF LIFE?
FIRST, AS OTHERS MENTIONED, THE
IMPACT OF ENDOMETRIOSIS ON
PATIENTS IN A LIFE, EDUCATION,
FAMILY, CAREER IS QUITE
SIGNIFICANT.
AND IN PATIENTS THAT HAVE
INADEQUATELY TREATED
ENDOMETRIOSIS THEIR LIFE COURSE
POTENTIAL CAN BE SUBSTANTIALLY
ALTERED BY SUFFERING FROM
CHRONIC PAIN AS WELL AS
INFERTILITY AND TO DIAGNOSIS
EARLY THE HOPE IS PATIENTS CAN
HAVE SIMILAR LIFE COURSE
ACHIEVEMENT TO THOSE WHO HAVE
NEVER EXPERIENCED ENDOMETRIOSIS.
I WOULD ALSO VENTURE TO GUESS IF
WE DIAGNOSIS AND TREAT EARLY WE
MIGHT ALSO BE ABLE TO INTERVENE
AT A TIME WHEN WE CAN PREVENT
TRANSITION TO CHRONIC PER SSISTT
AND NOCIPLASTIC PAIN.
THIS ABSTRACT WAS PRESENTED BY A
GROUP THAT LOOKED AT DURATION OF
PAIN SYSTEMS AND THOSE WHO HAD
LONGER DURATION OF PAIN HAD
GREATER FINDINGS CONNECTED WITH
NOCIPLASTIC PAIN.
FROM A CLINICAL PERSPECTIVE ONE
PAIN APPROACH IS TO ALWAYS TREAT
THE WHOLE PERSON, TO IDENTIFY
ALL THE POTENTIAL REASONS AN
INDIVIDUAL CAN BE EXPERIENCING
PAIN INCLUDING ENDOMETRIOSIS AND
THE OVERLAPPING PAIN CONDITIONS
AND WE NEED TO BEGIN WITH GOLD
STANDARD THERAPIES FOR ALL THE
CONTRIBUTES FACTORS AND IN
CONDITIONS LIKE ENDOMETRIOSIS,
HORMONAL SUPPRESSION AND
SURGICAL EXCISION ARE THE GOLD
STANDARDS AND LOOK AT THE
FACTORS AND TREAT THOSE AS WELL.
WE NEED TO REMEMBER ONE SIZE
DOES NOT FIT ALL.
CHRONIC PAIN INCLUDING
ENDOMETRIOSIS PAIN CAN ARISE
FROM ANY COMBINATION OF THESE
DIFFERENT MECHANISMS.
CHRONIC PAIN IS ASSOCIATED WITH
CHANGES IN PAIN SENSITIVITY THAT
CAN BE MEDIATED BY THE BRAIN AND
PATIENTS WITH NOCIPLASTIC PAIN
CAN BENEFIT FROM THE TREATMENT
OF ENDOMETRIOSIS LESIONS BUT THE
REASON MAY NOT BE THE SAME AS
THOSE WITHOUT THE CHANGES.
I WANT TO EMPHASIZE IT CAN TAKE
TIME TO FIND THE BEST
COMBINATION OF TREATMENTS AND
THIS MAY CHANGE OVER THE LIFE
COURSE DEPENDING ON THE
PATIENT'S GOALS AND PREFERENCES.
SO WHERE DO WE GO FROM HERE?
WE ABSOLUTELY NEED BETTER
DIAGNOSTICS AS WELL AS IMPROVE
THE KNOWLEDGE AND ACCESS TO
EXPERT CARE.
BUT MORE IMPORTANTLY, ONCE WE
HAVE THE DIAGNOSIS THAT'S NOT
ENOUGH OUR CURRENT TREATMENT
STRATEGIES ARE INSUFFICIENT AND
NOT PATIENT CENTERED NOR
PERSONALIZED TO THE UNDERLYING
MECHANISM.
WE NEED TO INVEST TIME AND MONEY
IN DEVELOPING INNOVATIVE
THERAPIES TO TREAT PAIN AND
REOCCURRENCE AND IDENTIFY THE
RIGHT TREATMENT FOR EACH PATIENT
BASED ON THE INDIVIDUAL'S
UNDERLYING PAIN MECHANISM SO
THEY'RE NOT GOING THROUGH 10,
15, 20 PLUS YEARS TRYING YOU
WILL MULTIPLE THINGS IN WILL
THEY FIND THE COMBINATION THAT
WORKS FOR THEM.
I HOPE I DIDN'T TAKE TOO MUCH
TIME AND WANT TO THANK NICHD FOR
THE FUNDING OPPORTUNITIES
THEY'VE GIVEN OUR TEAM AND HOPE
WE'LL CONTINUE TO GO DOWN THE
COURSE OF DISCOVERY.
>> THANK YOU, SO MUCH, SUSIE.
THERE ARE SO QUESTIONS WE'LL
ANSWER IN THE PANEL.
HYSTERECTOMY CAME UP A FEW TIMES
AND YOU COMMENTED AS WELL.
TALK ABOUT DIAGNOSING ENDO AFTER
HYSTERECTOMY AND HOW CURATIVE OR
NOT IT IS.
>> HYSTERECTOMY AS A TAKE HOME
MESSAGE I GIVE TO PATIENTS IS
IT'S NOT A CURE FOR
ENDOMETRIOSIS.
TYPICALLY WE KNOW THERE'S QUITE
A BIT OF MORBIDITY ASSOCIATED
WITH REMOVING THE OVARIES
ESPECIALLY IN PRE-MENOPAUSAL
OVARIES.
UNLESS THEY'RE SEVERELY INJURED
WITH LESIONS THE STANDARD OF
CARE IS TO AT LEAST LEAVE ONE
OVARY BEHIND.
IT'S EFFECTIVE IN ABOUT 75% OF
PATIENTS REPORT LONG TERM
IMPROVEMENT IN THEIR SYSTEMS
WITH A HYSTERECTOMY THAT DOES
NOT INCLUDE THE OVARIES.
BUT WHERE THEY'RE REMOVED THE
EFFICACY INCREASES CLOSER TO 90%
HOWEVER IT'S IMPORTANT TO KNOW
UP TO 10% OF PATIENTS EVEN WITH
HYSTERECTOMY AND OVARY REMOVAL
HAVE SOME DEGREE OF PERSISTENT
PAIN.
IT'S NOT SYNONYMOUS WITH
RECURRENT ENDOMETRIOSIS.
SOME HAVE NO EVIDENCE OF
RECURRENT ENDOMETRIOSIS DESPITE
HAVING PERSISTENT PAIN AND
THAT'S WHERE WE LOOK FOR OTHER
CAUSES OF UNDERLYING PAIN.
CURRENTLY OUR MOST LIKELY WAY WE
LOOK FOR RECURRENT ENDOMETRIOSIS
IS WITH SOME TYPE OF ADVANCED
IMAGING LIKE MRI WITH A CAVEAT
UNDERSTANDING THAT THIS DOESN'T
IDENTIFY SUPERFICIAL DISEASE AND
THIS IS DEFINITELY AN AREA THAT
NEEDS ACTIVE ENGAGEMENT.
>> THANK YOU SO MUCH.
THE CENTRAL POINT IN YOUR TALK
THAT ENDOMETRIOSIS CHANGES THE
BRAIN, THE PAIN ITSELF, THAT
PAIN CHANGES YOUR BRAIN I THINK
IS SOMETHING THAT HAS SO MANY
REPERCUSSIONS FOR HOW WE'RE
TREATED AND HOW WE'RE ASKED TO
BE TREATED.
>> ABSOLUTELY.
SO FOR OUR LAST SPEAKER WE
WANTED TO TRY TO SHOWCASE THE
COOL RESEARCH NIH DOES SUPPORT
ON BEHALF OF THE AMERICAN
PUBLIC.
SOME OF THE WAYS WE ARE TRYING
TO DRIVE THE SCIENCE FORWARD AND
TAKE ADVANCES FROM OTHER FIELDS
AND BRING THEM TO GYNECOLOGY AND
WOMEN'S HEALTH.
ONE GREAT EXAMPLE IS NEXT GEN
JANE LED BY RIDHI TARIYAL GOING
TO TALK TO US ABOUT HER COMPANY
AND WHAT THEY'RE DOING TO DECODE
THE LANGUAGE OF UTERINE HEALTH.
>> THANK YOU, CANDACE.
I DON'T THINK I'M SHARING MY
SLIDES.
AMY IS.
PERFECT.
NEXT SLIDE MOVING FORWARD.
IT'S A PLEASURE TO FOLLOW ON THE
HEELS OF THIS POWERFUL GROUP AND
THESE EXPERTS HAVE GIVEN A
FOUNDATION OF THE LIVED JOURNEY
AND EPIDEMIOLOGY AND TREATMENT
AND WE SPENT YEARS BUILDING A
MENSTRUAL DATA PLATFORM.
I'LL START BY THANKING NICHD FOR
THEIR GENEROUS SUPPORT OF THEIR
WORK.
THERE WAS AND IS A DEARTH 6 OF
INFORMATION ON THE DATA AND
EFFORTS AND FUNDING TO CLOSE THE
GAP BY GENOMICALLY PROFILING
SHED EPITHELIUM HOPE TO IMPACT
HOW DISEASES SHOW UP IN OUR
MENSTRUAL CYCLES.
THERE ARE TWO OPPORTUNITIES
LOOKING AT MENSTRUAL BLOOD.
YOU CAN LOOK FOR THE ABSENCE OR
PRESENCE OF A SIGNAL THAT'S
PATHOGENIC AND LOOKING FOR A
LOCAL INFECTION CAUSED BY A
VIRUS OR BACTERIA.
SOMETHING PROFOUND AND WHAT WE
FOCUSSED ON IS ESTABLISHING A
CHANGE IN THE UTERINE RESPONSE
TO A STIMULUS.
I SAY THAT SPECIFICALLY BECAUSE
IT'S A TERM I'LL REFERENCE.
UTERINE RESPONSE AND AT A HIGH
LEVEL WE KNOW THE UTERINE LINING
IS A SENSITIVE ORGAN AND KNOWS
WHEN TO SHED AND GROW AND WHEN
TO BECOME PLACENTA AND A
COORDINATED CASCADE.
WHEN THERE'S A SHIFT IN THAT
HORMONAL CASCADE WHETHER DUE TO
A PATHOGENIC CONDITION OR
NATURAL AGING IT WILL SHOW UP IN
THE UTERINE LINING.
THE CHALLENGE AND WORK NEEDED IS
TO ESTABLISH WHAT THE TYPICAL
BASELINE LOOKS LIKE AND NEED
MOLECULAR SIGNATURES OF
DIFFERENT DISEASES THAT SHOW UP
IN THE ENDOMETRIUM.
THIS IS WHERE MENSTRUAL BLOOD
COMES INTO PLAY.
EVERY MONTH YOUR BODY GIVES US
EASY ACCESS TO THIS IMPORTANT
TISSUE TYPE UTERINE LINING IN
THE FORM OF NATURAL BIOPSY.
THIS IS YOUR PERIOD.
WE CREATE A PLATFORM TO
ESTABLISH MOLECULAR PROFILES OF
SHED ENDOMETRIUM AT SCALE.
HOW DO WE DO IT?
A SAMPLIZED SET TO PROCESS THE
SAMPLE TIME AND THEN BIO
INFORMATIC TIME LINE.
A BENEFIT OF THE WINDOW INTO THE
UNIQUE SIGNATURE CRITICAL TO
UNDERSTANDING FEMALE BORN BODIES
AND ENABLES ACCESSING DIAGNOSIS
AND CAN LIVE IN A RURAL AREA IF
YOU CAN'T TAKE TIME OFF WORK FOR
IN-CLINIC PROCEDURE OR A
TEENAGER AND NOT READY FOR
SURGERY AND HOPE TO EXPAND
ACCESS BROADLY AND IT'S AN
INTERESTING WAY TO UNDERSTAND
THE DISEASE.
THIS IS A VISUAL REPRESENTATION
OF PATTERNS WE'RE EXPLORING AND
GOOD EXAMPLE OF WHAT WE CALL
UTERINE RESPONSE.
WE SEQUENCED TAMPONS FROM PEOPLE
WHO HAVE NO KNOWN PATHOLOGY AND
THEN SEEK TAMPONS WITH
INDIVIDUALS FROM ENDOMETRIOSIS
SO DETERMINE HOW THE SIGNATURE
SHIFTS AND WHETHER IT SHIFTS IN
A PREDICTABLE OR REPRODUCIBLE
MANNER.
YOU MIGHT WONDER IF THIS CHANGES
BASED ON AGE OR ETHNICITY OR
BIRTH CONTROL OR CONFOUNDED BY
OTHER ACUTE CONDITIONS YOU MAY
BE EXPERIENCE.
THESE ARE ALL GREAT QUESTIONS.
WE ARE BEGINNING TO UNDERSTAND
CERTAIN TYPE OF BIRTH CONTROL
FOR EXAMPLE DO MAKE A DIFFERENCE
IN THE MENSTRUAL SIGNATURE.
WE HAVE A CHANGE IN THE
SIGNATURE ACROSS AGE COHORTS.
WE'LL CONTINUE TO UNPACK AND
INVESTIGATE THE IMPACT OF THE
VARIABLES.
OUR GOAL IS TO CREATE A LARGE
ENOUGH OF UTTERINE PROFILES TO
UNDERSTAND A SET OF FEATURES.
A MORE NEAR TERM GOAL IS A
PREDICTIVELY ALTERED RESPONSE TO
ENDOMETRIOSIS.
WE ARE NOT LOOKING FOR ECTOPIC
TISSUE THAT MADE ITS WAY OUT BUT
LOOKING FOR WHAT IS SPECIFIC TO
THE ESTROGEN DOMINANCE THAT ARE
HALLMARK FEATURES OF
ENDOMETRIOSIS.
WE COLLECTED THOUSANDS OF
TAMPONS FROM HUNDREDS OF WOMEN
TO ESTABLISH, TEST AND VALIDATE
OUR ANALYSIS THAT A TAMPON WITH
SOMEONE FROM ENDOMETRIOSIS WILL
LOOK DIFFERENT ON A MOLECULAR
LEVEL TO SOMEONE WITHOUT
ENDOMETRIOSIS.
WE'RE CURRENTLY WORKING TO
ESTABLISH HOW WELL OUR TEST
WORKS IN PATIENTS WITH
INFERTILITY OR CHRONIC PELVIC
PAIN FUNDED IN PART BY NIH.
WE'RE ABLE TO PICK UP THE
DIFFERENCES BETWEEN THE SUBTYPES
OF SUPERFICIAL LESIONS.
WHAT WE'RE GOING AFTER WE
UNDERSTAND ENDOMETRIOSIS IS
EXTREMELY COMPLEX AND
HETEROGENEOUS.
WE'RE ANCHORED ON CAPTURING AND
BEING ABLE TO CHARACTERIZE A
UNIQUE SIGNATURE TO MULTIPLE
ESTROGEN-DOMINATED INFLAMMATORY
CONDITIONS.
I WALKED YOU THROUGH A SINGLE
EXAMPLE OF A NON-INVASIVE
DIAGNOSTIC WE THINK COULD BE
BENEFICIAL IN DIAGNOSTIC
ODYSSEYS WHETHER IT'S
FIBROMEIOSIS OR PCOS AND OTHERS
ARE NOT TREATED IN A TIMELY
MANNER BECAUSE DIAGNOSIS IS NOT
EASY.
THERE'S OTHER WAYS IN WHICH THE
DATA IN THE PLATFORM CAN CHANGE
HOW WE ACCESS CARE.
AN EASY TO USE DIAGNOSTIC CAN
ALSO BE LEVERAGED TO DETERMINE
WHETHER THERAPY IS EFFECTIVE.
YOU CAN IMAGINE WHETHER YOU'RE
HAVING SURGERY OR GOING ON
PROGESTERONE OR ANALOG AND COME
OFF IT ON HOLIDAY IT WOULD BE
HELPFUL TO UNDERSTAND WHETHER
THERE'S BEEN A MOLECULAR CHANGE
THAT IS INDICATIVE OF THE
THERAPY BEING EFFECTIVE.
WE HOPE THIS COULD BE BUILT IN
ONCE YOU HAVE EFFECTIVE
DIAGNOSIS SIMPLE ENOUGH TO
ADMINISTER.
THIS SLIDE IS SHOWING YOU SOME
REAL DATA.
WE'RE LOOKING AT
EXPRESSION-EXCHANGES OF TWO
GENES OF INTEREST.
I'M JUST GOING TO WALK YOU
THROUGH THE LEFT-HAND SIDE IN
HOW TO READ THE GRAPH.
THE FIRST BAR IN BRIGHT GREEN IS
EXPRESSION LEVELS OF THE GENE IN
A COMPLETELY HEALTHY COHORT AND
THE NEXT BAR IS PRE-SURGERY
TAMPONS FROM PEOPLE WE KNOW HAVE
ENDOMETRIOSIS.
THE THIRD BAR WHICH IS THE
LIGHTER GREEN IS POST-SURGERY
TAMPONS FROM PATIENTS WHERE AS
FAR AS WE KNOW THE SURGERY WAS
SUCCESSFUL.
AND FINALLY THE PALE YELLOW BAR
THE LAST BAR IS EXPRESSION
LEVELS FROM PATRONS WITH A
SURGERY THAT COULD NOT REMOVE
ALL THE ECTOPIC TISSUE.
YOU CAN SEE WE CAN TRACK HOW THE
EXPRESSION LEVELS OF KEY TARGETS
ARE CHANGING BASED ON WHETHER OR
NOT YOU HAVE ENDOMETRIOSIS AND
THIS IS WHAT CAN BE HELPFUL IN
TRACKING YOUR BODY'S RESPONSE ON
A MORE GRANULAR LEVEL.
AND SIX MONTHS POST SURGERY AND
12 MONTHS POST SURGERY AND WE
HAVE STEADY PARTICIPANTS WHO
HAVE BEEN IN OUR STUDY FOR YEARS
AND HAD A RECURRENCE AND
PROVIDED SAMPLING TO PROVIDE
INSIGHT TO THE PROGRESS OF THE
DISEASE.
THE LONGITUDINAL SAMPLING IS
ONLY POSSIBLE IF THE MEANS OF
COLLECTION IS SIMPLE ENOUGH.
I KEEP HAMMERING IN ON MENSTRUAL
AFFLUENCE BECAUSE IT'S EASY TO
COLLECT.
AND TEST NOVEL DRUG CANDIDATES
IN MODELS WITH EXPLORED HOW
CONCENTRATIONS FROM NOVEL DRUGS
IMPACT UTERINE PROFILES OVER
TIME.
WE'RE EXCITED BY THIS WORK
BECAUSE PRE-CLINICAL MODELS
BASED ON PATIENT-DERIVED CELLS
ARE AS CLOSE TO ANY HUMAN BEFORE
GETTING RESULTS.
THIS COULD IMPACT COST AND TIME
TO MARKET FOR NEW DRUG FOR
ENDOMETRIOSIS SUBSTANTIALLY.
AS MENTIONED ALL THIS RESEARCH
IS REALLY PATIENT DRIVEN AND
MOTIVATED BY THE PEOPLE WANTING
TO UNDERSTAND AND DERIVE WHAT IS
MENSTRUATION AND THE GENOMICS OF
THE UTERINE PROFILES AND USE IT
AS A DIAGNOSTIC LEVER.
WE COLLECTED 2,000 SAMPLES OF
CANDIDATES SOME WE SEQUENTIALLY
FOLLOWED FOR A YEAR OR YEAR
PLUS.
I CAN'T RESIST ENDING THE TALK
WITHOUT MY FINAL SLIDE WHICH IS
IF YOU ARE INTERESTED, YOU CAN
ABSOLUTELY SCAN THE QR CODE AND
LEARN MORE ABOUT THE RESEARCH
WE'RE DOING AND SHARE IT.
AS I MENTIONED THE TOTAL VISION
OF UNDERSTANDING HOW
ENDOMETRIOSIS IS DIFFER BASED
WHETHER YOU HAVE OTHER
COMORBIDITIES OR AUTOIMMUNE
CONDITIONS TO PARS THROUGH THAT.
WE'LL HAVE A CALL TO ACTION TO
SAY IF YOU CAN PARTICIPATE OR
KNOW SOMEONE WHO CAN IS A
FUNDAMENTAL AND PROFOUND WAY TO
MOVE THE RESEARCH FORWARD.
THANK YOU.
>> THANK YOU FOR ENDING ON THAT
SLIDE BECAUSE THERE'S TONS OF
QUESTIONS AND IT'S NICE WOMEN
CAN COLLECT SAMPLE IN THEIR OWN
HOME AND MAKE IT WOMAN-CENTRIC
OR PATIENT-CENTRIC WAY OF
COLLECTION.
THANK YOU FOR THAT.
THERE'S LOTS OF QUESTIONS IN THE
CHAT IF YOU WANT TO TRY TO
ANSWER SOME OF THOSE.
CERTAINLY SOME OF YOUR POTENTIAL
FUTURE COLLABORATORS WOULD LIKE
TO KNOW ABOUT COLLABORATING WITH
YOUR DATA SET AS WELL.
I'LL LET YOU ANSWER THOSE.
I KNOW YOU COLLABORATE VERY WELL
BECAUSE I KNOW MANY PARTNERSHIPS
YOU'RE PART OF.
I'LL LET YOU ANSWER THOSE
QUESTIONS AND ASK THE REST OF
OUR PANEL, THANK YOU, RIDHI, BUT
I'LL ASK EVERYONE TO JOIN YOU ON
CAMERA SO WE CAN START ASKING
AND I APOLOGIZE TO THE AUDIENCE
NOW BUT I WE WON'T GET THROUGH
ALL 45 OR SO QUESTIONS TODAY BUT
TRY TO GO THROUGH AS MANY AS WE
CAN AND TRY TO HAVE FOLLOW-UP
FROM OUR PANELISTS LATER ON AND
TRY TO SUM UP SOME QUESTIONS.
I WANT TO START WITH A QUESTION
FOR ALL OF YOU, MAYBE STARTING
WITH YOU, DIANA, WE TALKED ABOUT
BEING YOUR OWN BEST ADVOCATE AND
KNOWLEDGE IS POWER THAT'S
SOMETHING YOU SAID AND MULTIPLE
PEOPLE SAID.
HOW DO WE OPERATIONALIZE THAT
AND WHAT'S THEIR FIRST STEP
MAKING SURE THEY'RE THEIR OWN
BEST ADVOCATE HERE?
>> I HAVE A LOVE-HATE OR
LOVE-LOATHE WITH THAT EXPRESSION
TO BE YOUR BEST ADVOCATE BECAUSE
ONCE AGAIN WE'RE PUTTING THE
BURDEN ON THE PATIENT TO HAVE
THE ONUS AND RESPONSIBILITY IN
THE MEDICAL KNOWLEDGE WHEN THEY
ALREADY ARE AT A HEIGHTENED
STATE OF PAIN AND CONFUSION AND
HARD PLACE TO BE IN SO I WANT TO
GIVE THAT EMPATHY RIGHT THERE.
WHEN YOU GET TO A DOCTOR'S
OFFICE, TRY TO COME AS PREPARED
AS POSSIBLE.
IF YOU'RE NOT SOMEONE WHO CAN
EASILY ADVOCATE FOR YOURSELF OR
GET INTIMIDATED BY BEING IN A
DOCTOR'S OFFICE, GO THERE WITH
SOME QUESTIONS PREPARED.
GO WITH A TRACK OF YOUR
SYMPTOMS.
MAKE SURE THE DOCTOR HEARS YOU
AND LISTENS TO YOU.
SAY THESE ARE MY TOP THREE
CONCERNS.
THESE ARE MY TOP SYMPTOMS.
THIS IS WHAT I'M NOTICING.
AS GREAT AS DOCTORS I'VE COME
ACROSS I'VE HAD TO DO THE HOME
WORK FOR THEM BECAUSE THEY DON'T
KNOW ME OR MY PAST.
I GO THROUGH LOADED WITH MY OWN
KNOWLEDGE AND HISTORY.
AND WHEN I KNOW I'M GETTING LOST
IN THEIR HISTORY I TRY TO
REFOCUS.
GO ARMED WITH YOUR OWN PERSONAL
MEDICAL HISTORY AND SAYING THIS
IS NOT NORMAL FOR ME.
I KNOW MY BODY.
ULTIMATELY YOU'VE LIVED IN YOUR
BODY, YOU KNOW YOUR BODY BEST.
IT SOUNDS SIMPLIFIED BUT IT'S A
GOOD STARTING POINT.
>> SUSIE, FROM A CLINICIAN'S
POINT OF CARE, CLINICIANS PEOPLE
ENCOUNTER FIRST WON'T BE
GYNECOLOGISTS OR SPECIALISTS IN
ENDOMETRIOSIS.
OBVIOUSLY WE'RE ALL WORKING
TOGETHER TO MAKE THE MEDICAL
SCHOOL EDUCATION BETTER ACROSS
THE SPECIALTIES BUT DO YOU HAVE
ADVICE FOR PEOPLE IN THE
AUDIENCE WHO MAY BE SEEING A
CLINICIAN FOR THE FIRST TIME OR
BRINGING THIS UP AFTER A TALK
AND SAYING I THINK IT IS ENDO
AND WHAT THEY CAN DO TO GET THE
MESSAGE ACROSS?
>> IT'S A GREAT QUESTION.
PATIENTS SHOULD BE ABLE TO
ADVOCATE FOR THEMSELVES AND IT'S
ALSO OUR DUTY AS CLINICIANS TO
LISTEN TO PATIENTS AND TO
RECOGNIZE THAT WHEN SOMETHING
DOESN'T FEEL RIGHT IT'S WITHIN
THEIR SCOPE AND TRAINING TO TAKE
CARE OF THAT AND IF NOT THEY
HELP THEM FIND THE RIGHT DOCTOR
TO DO THAT.
THE VAST MAJORITY OF PATIENTS AS
DIANA SAID WITH ENDOMETRIOSIS
PRESENT WITH SYMPTOMS SINCE
ADOLESCENCE BUT DON'T GET
DIAGNOSED UNTIL THEIR OLDER.
BEING VERY PROACTIVE ABOUT
MANAGING THOSE SYSTEMS TO YOUR
NUTRITION AND PRIMARY
GYNECOLOGISTS AND BRINGING UP
THE POSSIBILITY DO YOU THINK
THIS IS ENDOMETRIOSIS AND
DEPENDING ON THE PHYSICIAN'S
RESPONSE YOU MAY BE ABLE TO
GAUGE IS THIS THE RIGHT DOCTOR
FOR YOU AND IF NOT, TRY TO ASK
THEM TO GET ADVICE WHO WOULD BE
THE EXPERTS IN THE COMMUNITY
THAT COULD HELP THEM.
THERE ARE A LOT OF RESOURCES
ONLINE THAT CAN HELP PATIENTS AS
WELL AND WE CAN DEFINITELY PUT
SOME OF THAT INFORMATION OUT
THERE.
>> THANK YOU.
>> STACEY, YOUR TALK BROUGHT UP
THE RISK FACTOR FOR OTHER
CONDITIONS THAT MAY OVERLAP WITH
ENDOMETRIOSIS.
IT SEEMS ENDOMETRIAL AND OVARIAN
CANCER ARE BEING QUESTIONED
WITHIN THE CHAT.
I KNOW YOU HAVE WORK ON THIS.
IF YOU CAN TALK ABOUT HOW
THEY'RE RELATED AND MAYBE HOW IN
TERMS OF SEQUENCE OF EVENTS
OVARIAN VERSUS ENDOMETRIOSIS AND
WHETHER THEY HAPPEN AT THE SAME
TIME.
>> ABSOLUTELY.
YOU JUST DESCRIBED WHAT MAKES
THIS DISCOVERY AND THE CLINICAL
CARE DIFFICULT.
WHICH IS THE SEQUENCE OF EVENTS.
FOR ENDOMETRIAL CANCER IT SHOWS
A GREATER RISK OF CANCER OF
THOSE WITH ENDOMETRIOSIS BUT
WHEN WE LOOK AT ENDOMETRIAL
CANCER DIAGNOSED AT THE SAME
TIME AS ENDOMETRIOSIS, THE
ENDOMETRIOSIS IS DISCOVERED
BECAUSE OF THE EVALUATION FOR
ENDOMETRIAL CANCER AND THINKING
OF CAUSE AND EFFECT AND THINKING
OF ENDOMETRIOSIS AS THE PEOPLE
WITH HIGHER RISK AND SUBSEQUENT
RISK WE SEE NO PRIOR ASSOCIATION
BETWEEN ENDOMETRIOSIS AND
ENDOMETRIAL CANCER.
OVARIAN CANCER IS A DIFFERENT
STORY.
WE ABSOLUTELY SEE A CONSISTENT
INCREASED RISK OF OVARIAN CANCER
WITH ENDOMETRIOSIS AND THE KEY
QUESTIONS FOR US NOW ARE THE
PEOPLE WITH ENDOMETRIOSIS HAVE
HIGHER RISK?
IS IT ONLY THOSE WITH EN
ENDOMITRIOMAS OR THOSE WITH
LESIONS AND HOW LARGE THE RISK
IS.
OVARIAN CANCER IS VERY RARE.
THERE'S A 1% CHANCE ACROSS A
WOMAN'S LIFE TIME OF DEVELOPING
OVARIAN CANCER AND BY CURRENT
DATA ABOUT A DOUBLE RISK.
SO 2% RISK WHICH IS MUCH SMALLER
THAN MANY MANY OTHER HEALTH
CONDITIONS.
FIGURING OUT WHO IS AT RISK AND
ALSO FIGURING OUT WHEN AGAIN THE
ENDOMETRIOSIS IS FOUND AND THE
PEOPLE WITH OVARIAN CANCER
DIDN'T HAVE THEIR CHANCE TO HAVE
THE ENDOMETRIOSIS DIAGNOSED.
THIS IS ANOTHER AREA WHERE A
NON-INVASIVE DIAGNOSTIC WHICH
WOULD GIVE A SENSE OF ASPECT OF
RISK OF HEART ATTACKS AND
SYMPTOMS AND DIAGNOSTICS AND ALL
THE ASPECTS OF CLINICAL CARE
ONCE WE CAN REMOVE THE BARRIERS
AROUND THAT WE'LL HAVE A MUCH
BETTER UNDERSTANDING.
BUT THAT IS THE KEY ISSUE OF NOT
FRIGHTENING WOMEN AND MAKING
IMPORTANT SENSIBLE DECISIONS
BASED ON THE DATA WE HAVE NOW.
>> THANK YOU.
I'LL OPEN THIS UP TO THE WHOLE
PANEL BECAUSE I DON'T KNOW WHO
HAS SOMETHING TO SAY BUT THERE'S
A LOT OF QUESTIONS ABOUT
ENVIRONMENTAL TOXIN AND THE
CHEMICALS WE COME IN CONTACT
WITH DAY AFTER DAY.
I DON'T KNOW IF YOU HAVE STUDIED
THIS OR TALK ABOUT WHAT WE KNOW
ABOUT RISK FACTORS.
OBVIOUSLY THERE'S ESTROGENS OR
HORMONAL INFLUENCING CHEMICALS.
THERE'S SOME RISK FACTORS THERE.
I WILL OPEN IT UP TO ANYONE WHO
WANTS TO TALK ABOUT THIS.
>> I THINK THIS IS A STACEY
QUESTION BUT I'LL ADD ONE THING
WE TRY TO DO IS WE KNOW WE ARE
GENERA
GENERATING TERABYTES AND WE HAVE
INTENSE SURVEY INSTRUMENTS --
>> I'VE TAKEN THAT SURVEY.
IT IS INTENSE.
>> THANK YOU.
YOU'RE A SOLDIER FOR DOING IT
YOU CAN DO IT AT SURVEY AT NEXT
GEN JANE DOT COM AND TRY TO
DEVELOP THE MAPS.
WE HAVEN'T DONE EXPERIMENTS YET
DIRECTLY LINKING EXPOSURE TO
WHAT WE'RE SEEING IN THE
MENSTRUAL SIGNAL WHICH WE'RE
INTERESTED IN DOING BUT LAYING
THE GROUND WORK AND START
COLLECTING THE FEATURES THAT
COULD BE HELPFUL AND
UNDERSTANDING THE DATA WE'RE
SEEING DOWN STREAM EVEN IF WE'RE
NOT DOING IT CURRENTLY.
>> THANK YOU.
>> AND STACEY, YOU CAN TALK MORE
ABOUT THE RISK FACTORS.
>> I'LL CALL OUT WITH RESPECT TO
THE IMPORTANT MAPS FIGURING OUT
WHEN PEOPLE WERE EXPOSED, THE
DOSAGE OF THAT EXPOSURE AND THE
TIMING IN THEIR LIVES IS QUITE
COMPLEX.
BUT AS TECHNOLOGY IS IMPROVING
AND WE HAVE THESE GEOCODING MAPS
AND MANY HAVE BEEN DOING WORK IN
THIS SPACE.
WHAT WE KNOW IS THAT WHEN WE
LOOK RIGHT NOW IN WOMEN IN THEIR
SAY 30s AND 40s AND LOOK AT
LEVELS OF PHYTO ESTROGENS AND
OWNER EXPOSURE WE DON'T SEE
CORRELATIONS BUT THAT'S LIKELY
BECAUSE THE IMPACTFUL WINDOW WAS
AT BIRTH, CHILDHOOD OR EARLY
ADOLESCENCE.
AGAIN, MAPPING THOSE AND HAVING
THOSE STUDIES IS CRITICAL AND
IMPORTANT.
>> THANK YOU.
THAT'S A PERFECT SEGUE TO THE
NEXT QUESTION WHICH HAS COME UP
MANY TIMES ABOUT THE EXPERIENCE
OF ENDOMETRIOSIS IN YOUNG GIRLS
AND, DIANA DOES IT START WITH
YOUR FIRST PERIOD.
HOW DID IT START IN YOUR
ADOLESCENCE?
>> I'M NOT A SCIENTIST OR DOCTOR
BUT FROM MY PATIENT PERSPECTIVE
I WOULD SAY IT WAS WITHIN THE
FIRST FEW CYCLES THAT I WAS
HAVING MENSTRUAL PAIN -- I'M
GOING TO GET GRAPHIC BUT VERY
HEAVY FLOW AND IT WOULD BE FOR
OVER SOMETIMES BETWEEN 10 TO 14
HAD DAYS OF A CYCLE WHICH WAS
NOT NORMAL.
THAT WOULD COME WITH OTHER
SYMPTOMS.
AS I GOT OLDER AND PROGRESSED TO
HIGH SCHOOL I STARTED DEVELOPING
OVARIAN CYSTS AND HAD MY FIRST
RUPTURE AROUND 14 YEARS OLD.
AT THAT POINT LIKE I SAID IT WAS
21 YEARS TO DIAGNOSIS.
I WAS PUT ON BIRTH CONTROL PILLS
AND SUPPRESSION ON AND OVER AND
NOT ONCE DID I HEAR IT WAS
ENDOMETRIOSIS OR A DISEASE.
BY THE TIME I WAS DIAGNOSED I
HAD ADVANCED DISEASE AND
INFERTILITY AT 32.
AND THE SYMPTOMS KEPT GETTING
MORE ACUTE AND OBVIOUSLY ALSO
EXTRA PELVIC.
>> SUSIE AND STACEY DO YOU WANT
TO TALK MORE ABOUT HOW COMMON IT
IS TO HAVE THESE SYMPTOMS OF
ENDOMETRIOSIS IN ADOLESCENCE OR
WHEN YOU FIRST START YOUR
PERIOD?
>> STACEY, YOU GO FIRST.
>> I WAS GOING TO SAY I'LL LET
SUSIE TALK ABOUT FROM THE
CLINICAL LENS THAT THERE ARE THE
ADC STUDY FRANK 2 THERE'S AN
INCREASING ATTENTION ON
PREDICTORS OF BIOMARKERS, PANEL
WAYS, PREDICTORS OF DYSMENORRHEA
BEFORE OR SOON AFTER ONSET AND
DISCOVERING INDICATIONS IN LATE
CHILDHOOD AND EARLY ADOLESCENCE
THAT SEEM TO BE INDICATIVE OF
THE LIKELIHOOD OF EXPERIENCING
NOT JUST DYSMENORRHEA BUT LIFE
IMPACTING THEMES AND THE NEXT
QUESTION IS, IS THAT THEN
PREDICTIVE OF DEVELOPMENT OF
CHRONIC PELVIC PAIN.
AND THE WINDOWS OF CRITICAL
EXPOSURE AND IT'S EXCITING
RESEARCH SHOWING INDICATIONS
THAT HOPEFULLY AGAIN WE CAN
UNDERSTAND MORE ABOUT THE
BIOLOGY WHICH MEANS THEN WE CAN
UNDERSTAND BETTER HOW TO TARGET
AND INTERVENE UPON IT.
SUSIE, DO YOU WANT TO SPEAK TO
PREVALENCES AND THE CLINICAL
PATHWAY?
>> WHAT YOU ARE BOTH SAYING IS
INCREDIBLY IMPORTANT AS WELL
INSIGHTFUL.
THE ONLY THING I WOULD ADD AS A
CLINICIAN THOUGH IS THAT WHILE
THIS IS TAKING OFF OUR
EPIDEMIOLOGY HAT AND PUTTING ON
OUR CLINICIAN HAT IS WHILE MANY
OF THESE THINGS ARE INCREASED
RISK FACTORS, IT DOES NOT
NECESSARY PREDICT WHAT WE SEE IN
A GIVEN INDIVIDUAL PATIENT.
YES, ABSOLUTELY THE BEST WHEN
YOU ASK PATIENTS RETROSPECTIVELY
WHEN DID YOUR SYMPTOMS BEGIN,
THE VAST MAJORITY OF PATIENTS
THAT HAVE ENDOMETRIOSIS RECALL
THEIR SYMPTOMS BEGAN IN
ADOLESCENCE.
BUT IT'S NOT THE SAME IN
ADOLESCENCE WHAT PROPORTION OF
THOSE WHO HAVE PAINFUL LIFE
IMPACTING DYSMENORRHEA OR PAIN
WITH THEIR PERIODS HAVE
ENDOMETRIOSIS THAT NUMBER WE
DON'T ENTIRELY KNOW.
AS EVERYONE ON THE PANEL KNOWS
WE DON'T HAVE A NON-INVASIVE WAY
AND OUR IMAGING DOES A GOOD JOB
WITH ADVANCED DISEASE WHICH IS
RARE IN ADOLESCENCE AND UNLESS
THEY HAVE A LAPAROSCOPY WHAT
PROPORTION HAVE IT WE DON'T KNOW
AND ON THE FLIP SIDE I WANT TO
POINT OUT IF I SEE AN ADULT
WOMEN WITH NEW ONSET
DYSMENORRHEA OR RELATIVELY NEW
DYSMENORRHEA THAT STARTED LATER
IN LIFE, DOES THAT MEAN SHE'S
LESS LIKELY TO HAVE ENDO?
ABSOLUTELY NOT.
WE SHOULD BE EVALUATING THOSE
PATIENTS WITH EQUAL LEVEL OF
SENSITIVITY AND CARE THAT THAT
IS A POSSIBILITY TOO AND FOR
MANY PATIENTS THEIR
ENDOMETRIOSIS JOURNEY STARTS
AFTER MANY YEARS OF NOT HAVING
PAINFUL PERIODS.
SO WE NEED TO CONSIDER IT IN ALL
OF THESE OPTIONS.
>> THIS QUESTION FROM THE
AUDIENCE BASED ON PSYCHOLOGICAL
TRAUMA AS A RISK FACTOR FOR
ENDOMETRIOSIS AND ALSO AS AN
OUTCOME OF ENDOMETRIOSIS.
HOW DOES ENDOMETRIOSIS OVERLAP
WITH DEPRESSION, ANXIETY AND
QUESTIONS LIKE THAT?
I MIGHT START WITH SUSIE?
>> I THINK THAT'S GREAT.
I THINK STACEY'S ONE OF THE FEW
PEOPLE I KNOW THAT'S PUBLISHED
IN A PROSPECTIVE WAY, CORRECT ME
IF I'M WRONG, STACEY ABOUT
DIAGNOSIS WITH ENDO AND LET HER
RESPOND BUT WHAT I THINK IS
IMPORTANT TO POINT OUT BROADLY
TO PATIENTS IS THAT I THINK ONE
OF THE MOST CHALLENGING THINGS
TO EXPLAIN IS I NEVER EVER WANT
A PATIENT TO GO AWAY FROM A
CLINICAL VISIT WITH THE
IMPRESSION THAT I THINK THE PAIN
IS ALL IN HER HEAD OR IF THEY
HAVE DEPRESSION OR ANXIETY, THAT
IT IS WHAT IS CAUSING THEM TO BE
IN PAIN.
WE KNOW WITH AN OVERWHELMING
AMOUNT OF PROSPECTIVE DATA THAT
FOR THE MAJORITY OF PATIENTS WHO
SUFFER FROM CHRONIC PAIN THE
MOOD DISORDERS COME AS A
CONSEQUENCE OF UNTREATED PAIN
AND THE PROPORTION THAT START
WITH MOOD DISORDERS AND GO ON TO
CHRONIC PAIN IS A SMALLER
PROPORTION.
BEING CLEAR TO DISTINGUISH THAT
IS INCREDIBLY IMPORTANT HOWEVER
WE DO KNOW THAT UNTREATED MOOD
DISORDERS MAKES IT VERY
DIFFICULT TO MANAGE AND IMPROVE
PAIN AND SO WE NEED TO TREAT
THOSE SIMULTANEOUSLY TO IMPROVE
PATIENTS QUALITY OF LIFE BUT NOT
BECAUSE WE THINK WE'RE
SPECIFICALLY TREATING THE
ENDOMETRIOSIS OR UNDERLYING
CONDITION BUT I'LL LET STACEY
TALK ABOUT THAT ONE PAPER OR
WHATEVER, SORRY.
>> THANK YOU, SUSIE.
I'LL JUST ADD THAT AGAIN WITH A
PATIENT-CENTER AND
PATIENT-FACING LENS THAT THERE
IS AN INCREASED RISK OF BEING
DIAGNOSED WITH THOSE WHO HAVE A
HISTORY OF PHYSICAL AND
EMOTIONAL ABUSE DURING
ADOLESCENCE THAT DOES NOT BY ANY
MEANS EXPLAIN AWAY THEIR
EXPERIENCE.
IT CERTAINLY DOES NOT MEAN THIS
IS AN ALL IN THEIR HEAD
CONNECTION.
IT ALSO DOES NOT MEAN THAT THOSE
WITH ENDOMETRIOSIS HAVE THAT
HISTORY.
WHAT IT DOES MEAN IS AGAIN
COMING BACK TO WE NEED TO CARE
ABOUT THESE EXPERIENCES.
WE NEED TO BE CURIOUS ABOUT
THEIR BIOLOGIC IMPACT.
WE KNOW ENDOMETRIOSIS IS ONE OF
A LONG LIST OF CONDITIONS
INCLUDING HIGH BLOOD PRESSURE
AND UTERINE FIBROIDS AND A LONG
LIST ASSOCIATED WITH EARLY LIFE
TRAUMA.
THE LENS THEN IS PREVENTING AND
CARING ABOUT EARLY LIFE TRAUMA
AND UNDERSTANDING WHAT IT IS
CATALYZING SO WE CAN MINIMIZE
THOSE LONG-TERM HEALTH IMPACTS.
>> THERE'S LOTS OF QUESTIONS
ABOUT YOUR TECHNOLOGY AS IT'S
BEING DEVELOPED.
DO YOU WANT TO TALK A LITTLE BIT
ABOUT HOW IT RELATES TO SOME OF
THE OTHER TESTS OR GIVE A
LANDSCAPE REVIEW OF WHAT'S OUT
THERE RIGHT NOW MAYBE I CAN TALK
ABOUT RADX AND THE FUTURE.
>> THE TWO I SAW POPPED ONE WAS
THE IVF SETTING IS AN
ENDOMET
ENDOMETRIAL BIOPSY AND A
BIOMARKER AND LEAVE IT UP TO THE
CLINICIANS TO TALK ABOUT HOW
THEY USE IT AND IT'S A MARKER OF
INFLAMMATION AND USED
INTERCHANGEABLY AS AN INDICATION
OF ENDOMETRIOSIS.
IT IS NOT A NEXT-GEN SEQUENCING
TEST LIKE OURS OR MENSTRUAL
BASED SO IT'S DIFFERENT .
THE OTHER IS THE SALIVA TEST
BEING DEVELOPED IN EUROPE.
I KNOW IT'S NOT IN THE U.S.
I THINK THEY'RE STILL COMPLETING
THEIR BIG TRIAL FOR THAT
PARTICULAR TEST AND SEE THE
RESULT OF THOSE TRIALS SOON.
AND ONE OTHER QUESTION THAT CAME
UP WHICH MULTIPLE PEOPLE TALKED
ABOUT OUR MRI SIGNATURES BY DAY
AND WE HAVE.
IT'S ONE OF THE BIGGEST THINGS
WE HAVE TO CONTROL FOR.
IT'S ALSO ONE OF THE REASONS WE
LIKE MENSTRUAL-BASED ASSAYS.
YOU'RE PASSIVELY ALIGNING WITH
THOSE IN THE CYCLE AND THERE'S A
WINDOW AND THE PERIOD LASTS 3 TO
7 DAYS OR WHAT HAVE YOU AND
THERE'S A WINDOW OF
INVARIABILITY AND THERE'S
PIPELINES WE HAVE TO BUILD TO
ACCOUNT FOR THAT VARIABILITY.
BUT I WOULD SAY WE SEE
VARIABILITY.
WE COLLECTED TAMPONS FROM PEOPLE
30 DAYS EVERY DAY OF THE MONTH
EVEN WHEN THEY'RE NOT BLEEDING.
I THING ONE OF THE BIGGEST
CHALLENGES FOR ANY TEST NOT
BASED ON MENSTRUATION IS STILL
WORTH PURSUING AND WE'RE FANS OF
SOME OF THESE ENDEAVORS BUT YOU
HAVE TO BE CAREFUL FOR WHERE
SOMEONE IS IN THEIR CYCLE.
IF YOU SEND SOMEONE FOR A BLOOD
OR SALIVA TEST OR BIOPSY YOU
HAVE INTRODUCED THIS HUGE
VARIABLE WHICH CAN MAKE YOUR
DATA MORE NOISY.
I THINK THOSE ARE THE ONLY TOOLS
I SAW COME UP.
WERE THERE TWO OTHERS?
>> THAT'S PERFECT.
THE FACT YOU BROUGHT US AROUND
TO THE FACT WOMEN WERE LEFT OUT
BECAUSE OF THIS COMPLEXITY OF
THE MENSTRUAL CYCLE AND NOW THE
SCIENCE IS TRYING TO FOCUS ON
THE COMPLEXITY AS A WAY TO LOOK
AT HEALTH IN A DIFFERENT WAY
SPECIFIC TO THAT POPULATION.
I THINK THAT'S A FANTASTIC WAY
TO END BY REALLY BRINGING US
AROUND TO THE INNOVATION IN THIS
SPACE BEING PATIENT CENTER AND
TRYING TO GET BACK TO THE IDEA
THAT NO ONE EXPERIENCES
ENDOMETRIOSIS IN THE SAME WAY
AND THE LESIONS AREN'T THE SAME
WAY AND NEED TO UNDERSTAND EACH
PATIENT.
I WANT TO THANK YOU ALL FOR THIS
PHENOMENAL PANEL.
YOU'VE BROUGHT DIFFERENT
PERSPECTIVES OF ENDOMETRIOSIS TO
THE REST OF US WHO DON'T ALWAYS
GET TO HEAR THAT.
THAT WAS FANTASTIC.
TO OUR LARGE AND PARTICIPATORY
AUDIENCE, THANK YOU.
I WILL DO MY BEST TO MAKE SURE
ANSWERS TO THESE QUESTIONS ARE
SENT OUT AFTER THE MEETING AND
THE RECORDING WILL BE SEND OUT
TO ALL REGISTRANTS AS WELL.
THANK YOU FOR BEING PART OF
THIS.
THANK YOU FOR BEING PART OF THE
CONVERSATION ON ENDOMETRIOSIS
AND FURTHERING THAT FOR ALL OF
US.
ON BEHALF OF NIH, THANK YOU AND
WE ARE COMPLETE.
I APPRECIATE EVERYONE'S HELP
BEING HERE TODAY.
S