>>> WE'RE BACK WITH THE LATEST
IN OUR ONGOING SERIES FOCUSED ON
WOMEN'S WELLNESS.
ENDOMETRIOSIS IS A DISEASE THAT
AFFECTS ONE IN TEN WOMEN
WORLDWIDE.
ORIGIN IS UNKNOWN.
WOMEN CAN GO YEARS WITHOUT BEING
DIAGNOSED.
>> NOW, WOMEN ARE SPEAKING UP.
CELEBRITIES LIKE LENA DUNHAM,
SUSAN SOARANDON HAVE SHARED THER
EXPERIENCES WITH THE DISEASE.
ALSO, MANY ARE TRYING TO ELEVATE
THE INFORMATION.
ONE WOMAN SPENT YEARS IN PAIN
BEFORE BEING DIAGNOSED HERSELF.
>> WE LOOK LIKE WE'RE
FUNCTIONING AND WELL.
IF YOU ONLY KNEW WHAT IT TOOK TO
HAVE ME STANDING IN YOUR FACE
WITH A SMILE ON, YOU'D THINK
DIFFERENTLY.
>> Reporter: IN 2014, JENNA, A
REGISTERED NURSE, FELT A PAIN
THAT IS ETCHED IN HER MEMORY.
>> I WAS DRIVING TO WORK AND
FEEL THIS EXCRUCIATING PAIN IN
THE RIGHT UPPER SIDE OF MY
STOMACH.
I WAS LISTENING TO MUSIC JAMMING
ONE MINUTE, AND THE NEXT, I
>> Reporter: THE PAIN SUBSIDED
BUT RETURNED EVERY MONTH AROUND
HER PERIOD.
>> FOUR MONTHS OF THAT CYCLICAL
PAIN BEFORE I DECIDED TO GO AND
SEE MY GYNECOLOGIST ABOUT IT.
SHE TOLD ME THAT, BASED ON WHERE
MY PAIN WAS, IT DIDN'T MAKE
SENSE THAT IT HAD ANYTHING TO DO
WITH MY PERIOD.
I SAID, OKAY.
>> Reporter: THE SYMPTOMS GOT
WORSE, AND JENNA SOUGHT ANOTHER
OPINION.
>> SHE STARTED ASKING ME POINTED
QUESTIONS, LIKE, DO YOU HAVE BAD
PAIN DAYS?
DOES YOUR PAIN KEEP YOU FROM
WORKING?
PAIN WITH SEX.
I TOLD HER YES TO ALL OF THAT.
SHE SAID TO ME, HAVE YOU EVER
HEARD OF ENDOMETRIOSIS?
I'M A NURSE AND NEVER HEARD THE
WORD BEFORE.
>> Reporter: THE GYNECOLOGIST
PRESCRIBED BIRTH CONTROL, BUT
THEESCALATE.
>> GOOD DAYS ARE LESS FREQUENT,
AND BAD DAYS ARE WORSE.
MY INSOMNIA IS AWFUL.
>> Reporter: SHE SAW MORE
DOCTORS, TRIED DIFFERENT
MEDICATIONS, HAD SURGERY, BUT
NOTHING SEEMED TO HELP.
>> IT WAS TO THE POINT WHERE
WALKING AROUND MY APARTMENT, I
WAS SHORT OF BREATH.
I'M HAVING CHRONIC CONSTIPATION,
NAUSEA, AND THIS BUILDUP OF
DIFFERENT SYMPTOMS.
>> Reporter: AFTER FOUR YEARS,
JENNA SAYS SHE TOOK CONTROL OF
HER ILLNESS AND FOUND A DOCTOR
WHO RECOMMENDED EXCISION
SURGERY, WHICH CUTS THE DISEASE
OUT.
>> YOU START TO GET TO A POINT
WHERE YOU FEEL LIKE, THIS IS THE
WAY THAT I HAVE TO LIVE FOREVER.
I DON'T WANT TO LIVE THIS WAY.
THIS IS HOW IT HAS TO BE,
>>> WELCOME BACK.
BEFORE THE BREAK, WE SHARED THE
STORY OF JENNA, A NURSE WHO SAYS
IT TOOK HER ALMOST FOUR PAINFUL
YEARS TO GET HER ENDOMETRIOSIS
DIAGNOSIS.
>> JENNA IS JOINING US, ALONG
NOW WITH HER DOCTOR, DIRECTOR OF
THE ADVANCED CENTER, AND AUTHOR
OF "BEATING ENDO," HOW TO
RECLAIM YOUR LIFE FROM
WELCOME TO YOU BOTH.
DOCTOR, YOU WERE SAYING THAT
EVERYTHING YOU HAD LEARNED IN
MEDICAL SCHOOL WAS FALSE.
THAT IS A SCARY COMMENT FOR SO
MANY WOMEN WHO ARE LOOKING FOR
RELIEF AND DIAGNOSIS.
HOW IS THAT POSSIBLE?
>> YOU KNOW, I LEARNED MORE IN
MY FIRST WEEK OF FELLOWSHIP , I
MINIMALLY INVASIVE SURGERY, THAN
FOUR YEARS OF OBGYN RESIDENCY
AND ALL OF MEDICAL SCHOOL.
>> GO AHEAD.
>> JENNA, HOW ARE YOU FEELING
NOW?
ARE YOU IN PAIN AT ALL, OR DID
YOU FINALLY FIND SOMEONE WHO
TOLD YOU EXACTLY WHAT WAS WRONG
AND HELPED TO SOLVE THE PROBLEM?
>> SINCE I HAD MY SURGERY IN
2016, I HAVEN'T HAD ANY
ENDOMETRIOSIS TYPE PAIN AT ALL.
THAT DOESN'T MEAN THAT MY BODY
COMPLETELY WORKS THE WAY THAT IT
WAS DESIGNED TO WORK.
HAVING THE DISEASE UNDIAGNOSED
FOR SO LONG, HAVING MUSCLES THAT
ARE TIGHT AND IN PAIN FOR SO
LONG, THEY KIND OF LEARN HOW TO
WORK PROPERLY.
THERE'S STILL A LOT OF WORK THAT
I HAVE TO DO.
A LOT OF PHYSICAL THERAPY AND
THINGS LIKE THAT TO KEEP MYSELF
FUNCTIONING THE WAY THAT I
SHOULD.
>> I WAS STRUCK IN THE PIECE
WHERE YOU SAID THAT THE DOCTOR
HAD GIVEN YOU HOPE TO LIVE.
THERE'S SO MUCH SHAME KIND OF
AROUND THIS CONVERSATION, AROUND
WOMEN'S PELVIC STORIES.
WHAT CAN WE DO TO ALLEVIATE THAT
AND MAKE IT MORE ACCEPTABLE TO
HAVE THESE CONVERSATIONS?
>> I THINK EDUCATION, HONESTLY.
IF THE SGYNECOLOGISTS UNDERSTAN,
THE PATIENTS ARE VALIDATED, THEY
SHARE STORIES, IT IS THIS
BOOMERANG EFFECT OF EARLY
DIAGNOSIS AND PEOPLE TALKING
ABOUT IT.
>> IT TOOK FOUR YEARS TO FIND A
DOCTOR WHO COULD DIAGNOSE YOU.
>> RIGHT.
>> THEN YOU FIND IT TOOK SOME
WOMEN 10 YEARS, 20 YEARS, LIVING
IN EXTREME, BRUTAL PAIN.
>> YEAH.
>> WHAT IS GOING ON?
HOW COULD DOCTORS NOT KNOW THAT
THIS PROBLEM EXISTS IF IT
AFFECTS ONE IN TEN WOMEN?
>> YEAH.
THAT'S THE QUESTION THAT ALL OF
US IN THE COMMUNITY HAVE.
NOW ARE THEY SO UNAWARE THAT
THIS IS HAPPENING?
I THINK, PERSONALLY, THAT NOT
HAVING A FULL UNDERSTANDING OF
THE SYMPTOM PROFILE OF E
ENDOME
ENDOMETRIOSIS, IT IS NOT JUST A
PAINFUL PERIOD, THAT THERE'S
OTHER THINGS THAT COME ALONG
WITH IT, LIKE NAUSEA AND
CONSTIPATION AND DIARRHEA AND
BACK PAIN AND BRAIN FOGS.
I THINK OUR DOCTORS AREN'T
PUTTING THE PICTURE TOGETHER.
THAT'S KEEPING US FROM GETTING
DIAGNOSED SOONER.
>> YOU WERE SAYING IN THE BREAK
THAT YOU THINK THIS IS ACTUALLY
CRIMINAL, THAT SO MANY WOMEN
HAVE TO GO THROUGH SO MANY HOOPS
TO GET A DIAGNOSIS.
IF WOMEN ARE LISTENING TO THIS
RIGHT NOW AND THEY'RE WHERE YOU
WERE IN YEAR ONE OR YEAR TWO,
WHAT ARE THE SYMPTOMS THAT MAY
LEAD THEM TO THIS PROPER
DIAGNOSIS, IF THEY'RE
EXPERIENCING WHAT?
>> 90% OF WOMEN WITH
ENDOMETRIOSIS PRESENT WITH
INTESTINAL SYMPTOMS.
CONSTIPATION, BLOATING,
DIARRHEA, PAINFUL BOWL MUC
MOVEMENTS.
FROM A GI PERSPECTIVE, WOMEN
HAVE PAINFUL PERIODS, DEEP
PENETRATION PAIN WITH SEX.
THERE IS A HOST OF URILOGICAL
SYMPTOMS.
FEELINGS LIKE THEY HAVE URINARY
TRACT INSPEFECTIONS OF WOMEN WI
INFERTILITY, 40% TO 50% OF WOMEN
DIAGNOSED, THE IDEOLOGY IS E
ENDOME
ENDOMETRIOSIS.
>> WOW.
>> UNDERSTANDING IT IS MORE OF
AN INFLAMMATORY PICTURE, AND HOW
THE ENDOMETRIOSIS AFFECTS ALL
THE ORGAN SYSTEMS.
IN JENNA'S CASE, ALSO HER D
DIAP
DIAPHRAGM.
DIAGNOSIS AND EARLY TREATMENT.
>> JENNA, IT WAS INTERESTING
BECAUSE I ASKED, NOW THAT IT
SEEMS WE'RE TALKING ABOUT IT
MORE, ARE DOCTORS BECOMING MORE
AWARE, OR ARE FEMALE PATIENTS
BECOMING SMARTER AND BEING THEIR
OWN SELF-ADVOCATES?
>> I THINK THE PATIENTS ARE
BECOMING SMARTER.
WE'RE REALIZING IT IS NOT A
DISEASE THAT WE ARE GOING TO BE
ABLE TO JUST SHOW UP TO OUR
DOCTOR AND SAY, HELP ME.
WE NOW KNOW MORE THAN A LOT OF
OUR DOCTORS DO.
A LOT OF THE WORK WE'RE TRYING
TO DO WITH THE ENDOMETRIOSIS
COALITION --
>> AND YOU STARTED THAT TO
ADVOCATE IT, TO CONNECT, TO HELP
ON YOUR OWN.
>> YES.
>> WHAT IS YOUR MISSION?
>> OUR MISSION IS TO RAISE
AWARENESS FOR THE DISEASE.
I MEAN, A DISEASE THAT AFFECTS
ONE IN TEN WOMEN, YET YOU SAY
THE WORD, AND MOST PEOPLE DON'T
EVEN KNOW WHAT YOU'RE TALKING
ABOUT.
I WAS JUST WITH A GROUP OF YOUNG
WOMEN, AND WHEN I SAID WHAT I
HAVE AND WHAT WE DO, NOT A
SINGLE ONE KNEW WHAT I WAS
TALKING ABOUT.
THAT'S PART OF THE PROBLEM.
THE GENERAL PUBLIC DOESN'T KNOW
THIS DISEASE EXISTS, AND OUR
DOCTORS DON'T REALLY UNDERSTAND
IT, AS WELL.
>> WE WANT TO THANK YOU FOR
JOINING US THIS MORNING.
FOR MORE INFORMATION ON
ENDOMETRIOSIS, PLEASE VISIT 3rd
HOUR OF "TODAY".COM.
ALSO, LET US KNOW WHAT WOMEN'S
WELLNESS TOPICS YOU'RE
INTERESTED IN LEARNING MORE
ABOUT IT.
THERE ARE SO MANY, AND THERE'S
SO MUCH INFORMATION THAT WE WANT
TO HELP BRING OUT INTO THE
LIGHT.
SO MANY PEOPLE ARE SUFFERING,
AND THEY DON'T HAVE TIME TO GO
FOR FOUR YEARS, RIGHT, AND TO GO
THROUGH SO MANY DOCTORS TO GET A
DIAGNOSIS.
WE REALLY WANT TO BE PROACTIVE
AND GET THIS INFORMATION