Why endometriosis can take years to diagnose
Clip: 2/9/2025 | 6m 16sVideo has Closed Captions
Endometriosis affects millions, but can take years to diagnose. Here’s what to know
Worldwide, 1 in 10 women of reproductive age suffer from a condition known as endometriosis. It’s an illness where tissue similar to the uterine lining grows in places it’s not supposed to be, and can lead to infertility, debilitating pain and financial hardship. Ali Rogin spoke with gynecologic surgeon Dr. Laura Homewood for our ongoing series, “Unequal Treatment.”
Major corporate funding for the PBS News Hour is provided by BDO, BNSF, Consumer Cellular, American Cruise Lines, and Raymond James. Funding for the PBS NewsHour Weekend is provided by...
Why endometriosis can take years to diagnose
Clip: 2/9/2025 | 6m 16sVideo has Closed Captions
Worldwide, 1 in 10 women of reproductive age suffer from a condition known as endometriosis. It’s an illness where tissue similar to the uterine lining grows in places it’s not supposed to be, and can lead to infertility, debilitating pain and financial hardship. Ali Rogin spoke with gynecologic surgeon Dr. Laura Homewood for our ongoing series, “Unequal Treatment.”
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Learn Moreabout PBS online sponsorshipALI: ONE IN 10 WOMEN OF REPRODUCTIVE AGE AROUND THE.
WORLD SUFFER FROM A CONDITION KNOWN AS ENDOMETRIOSIS.
IT'S AN ILLNESS WHERE TISSUE SIMILAR TO THE UTERINE LINING GROWS OUTSIDE OF THAT ORGAN, IN PLACES IT'S NOT SUPPOSED TO BE.
IT CAN LEAD TO INFERTILITY, DEBILITATING PAIN AND FINANCIAL HARDSHIP.
FOR OUR SERIES, UNEQUAL TREATMENT, I RECENTLY SPOKE WITH DR. LAURA HOMEWOOD A GYNECOLOGIC SURGEON AT UVA HEALTH ABOUT HOW THE MEDICAL COMMUNITY IS WORKING WITH PATIENTS TO LEARN MORE ABOUT THIS DISEASE.
DR., THANK YOU FOR JOINING US.
WE MENTIONED SOMETIMES IT TAKES YEARS TO GET A DIAGNOSIS.
IT IS THE AVERAGE PATIENT'S TIME TO GET A DIAGNOSIS AND WHY DOES IT TAKE SO LONG?
DR. HOMEWOOD: THE STATISTIC AROUND ENDOMETRIOSIS, IT CAN TAKE AN AVERAGE OF SEVEN YEARS AND SEEING SEVEN DIFFERENT DOCTORS BEFORE A WOMAN CAN GET HER DEFINITIVE DIAGNOSIS OF ENDOMETRIOSIS.
DESPITE IT BEING A VERY COMMON DIAGNOSIS IT IS DIFFICULT TO DIAGNOSE BECAUSE YOU ACTUALLY HAVE TO HAVE SURGERY TO GET A TISSUE DIAGNOSIS.
THERE IS NO EASY BLOOD TEST OR SCREENING, IMAGING THAT IS FOUND IN OTHER DISEASES.
ALSO SOME PROVIDERS ARE NOT GOOD AT CATCHING IT.
THEY ARE VERY VAGUE SYMPTOMS THAT CAN MIMIC OTHER DISEASES AND THAT CAN LEAD TO BIG DELAYS FOR WOMEN, UNFORTUNATELY.
ALI: WE SPOKE TO PATIENT ONE ADVOCATE WHO SAID SHE WENT NEARLY A DECADE BEFORE SHE WAS DIAGNOSED AND EXPERIENCED TREMENDOUS UNCERTAINTY, HIGH MEDICAL BILLS LET'S TAKE A IN THE INTERIM.
LET'S TAKE A LISTEN TO WHAT SHE HAD TO SAY.
>> I WAS VERY YOUNG WHEN I FIRST STARTED GOING THROUGH THIS IN MY YOUNG 20S AND I DIDN'T HAVE A LOT OF EXTRA MONEY.
AS TIME WENT ON SOME OF THE SURGERIES WERE NOT COVERED BY MY INSURANCE.
SO I HAD TO PAY OUT OF POCKET TO HAVE SURGERY.
ENDOMETRIOSIS HAS A HUGE FINANCIAL BURDEN AND IMPACT ON THE INDIVIDUAL WHO'S SUFFERING AND THEIR FAMILIES.
ALI: DO YOU SEE A LOT OF PATIENTS WITH STORIES LIKE HERS?
DR. HOMEWOOD: ABSOLUTELY, I HEAR THIS TYPE OF STORY ALMOST DAILY IN MY CLINIC.
ENDOMETRIOSIS HAS A LOT OF IMPACTS ON A PATIENT'S LIFE AND YOU HAVE TO CONSIDER DIFFERENT COSTS.
NOT ONLY THE FINANCIAL COST TO THE PATIENT IN THE CO-PAYS, IN THE MEDICATION COSTS, IN SURGERY AND ALL OF THOSE PERSONAL OUT-OF-POCKET COSTS.
THERE'S ALSO A HUGE COST TO THE HEALTH SYSTEM IN THE INCREASED UTILIZATION BY THESE PATIENTS.
LIKE I MENTIONED, THESE PATIENTS WILL SEE MULTIPLE DOCTORS BEFORE THEY'RE ABLE TO GET THEIR DIAGNOSIS AND THAT REALLY ADDS UP OVER TIME WOULD WE HAVE DATA THAT SUGGESTS A TYPICAL WOMAN WILL SPEND ABOUT $4000 TO FIVE THOUSAND DOLLARS BETWEEN THEIR OUT-OF-POCKET COSTS AND INSURANCE COVERAGE IN A SINGLE YEAR.
HOWEVER, PATIENT WITH ENDOMETRIOSIS, THEY ARE LOOKING AT ABOUT $14,000 PER YEAR.
THERE WAS A LOT OF COST FINANCIALLY.
YOU ALSO HAVE TO THINK ABOUT THE OPPORTUNITY COST OF HAVING THIS DISEASE.
THAT IS THE LOSS OF THE POTENTIAL GAIN WHILE THESE PATIENTS ARE LEFT BEDRIDDEN AND IN PAIN FOR A COUPLE DAYS EACH MONTH DURING THEIR MENSES.
THEY MISS WORK, HAVE TO CALL OUT, MAYBE ARE NOT PROMOTED AT THE SAME SCALE AS OTHER PATIENTS WHO DON'T HAVE TO MISS WORK.
ALI: THERE ARE ALSO ISSUES WITH FERTILITY.
CAN YOU TELL US ABOUT THOSE?
DR. HOMEWOOD: UNFORTUNATELY THERE IS AN ASSOCIATION BETWEEN INFERTILITY AND ENDOMETRIOSIS.
IF YOU ARE NOT ABLE TO GET PREGNANT, NATURALLY, OFTENTIMES THESE WOMEN HAVE TO SEEK THE ASSISTANCE OF INFERTILITY SPECIALISTS AND ASSISTED REPRODUCTIVE TECHNOLOGIES.
FOR EXAMPLE, IN VITRO FERTILIZATION, A GENERAL CYCLE OF THAT CAN COST ANYWHERE FROM $15,000 TO $25,000 OUT OF POCKET IF YOUR INSURANCE ISN'T COVERING IT.
ALI: WHAT NEEDS TO CHANGE IN TERMS OF HOW EXPERTS, HOW DOCTORS, HOW RESEARCHERS THINK ABOUT AND TREAT THIS DISEASE?
DR. HOMEWOOD: LIKE I MENTIONED EARLIER THERE'S NO GREAT WAY TO , EASILY DIAGNOSE THIS DISEASE SO I THINK THERE NEEDS TO BE MORE RESEARCH IN THE FIELD OF ENDOMETRIOSIS TO GET A NONINVASIVE DIAGNOSTIC TESTS.
THE OTHER THING IS PATIENT AWARENESS.
SOME WOMEN DON'T KNOW THAT IT'S NOT NORMAL TO HAVE SUCH PAINFUL PERIODS OR IT'S NOT NORMAL TO MISS SCHOOL AND HAVE TO MISS WORK BECAUSE OF A PAINFUL PERIOD.
ALI: I'M SURE PART OF THIS IS DOCTORS NEEDING TO BE MORE INCLINED TO LISTEN TO THEIR PATIENTS WHEN THEY BRING UP SEVERE PERIOD PAIN.
DR. HOMEWOOD: I HEAR THAT ALL THE TIME, PATIENTS SAY MY DOCTOR SAID, IT IS JUST YOUR PERIOD, TAKE SOME IBUPROFEN, WHEN IT IS SO MUCH MORE COMPLICATED.
IT IS DIFFICULT FOR DOCTORS TO HAVE A VERY INTENSE AND LONG CONVERSATION ABOUT CHRONIC PAIN IN A 10 OR 15 MINUTE VIDEO SLOT WITH THEIR PATIENTS.
YOU NEED TIME AND EFFORT TO GET TO THE BOTTOM OF THE PROBLEM AND I THINK SOME PROVIDERS DON'T HAVE THE TIME OR EXPERTISE.
ALI: I WANT TO BE SURE TO ASK YOU ALSO WHAT SORT OF TREATMENTS ARE AVAILABLE FOR THIS?
DR. HOMEWOOD: THERE ARE A LOT OF DIFFERENT TREATMENTS COME AS SIMPLE AS BIRTH CONTROL PILLS DIFFERENT TYPES OF BIRTH CONTROL , THAT EXIST THAT MANIPULATE THE HORMONES IN YOUR BODY SO THAT YOUR ENDOGENOUS OR THE HORMONES THAT YOUR BODY NATURALLY MAKES AREN'T STIMULATING THE ENDOMETRIOSIS, WE'RE ACTUALLY TRYING TO SUPPRESS IT WITH HORMONES.
THERE ARE A FEW NEW MEDICATIONS THAT ARE ON THE MARKET THAT HELP WITH PAIN ASSOCIATED WITH ENDOMETRIOSIS.
HOWEVER, THEY ARE EXTREMELY EXPENSIVE.
IN ADDITION TO MEDICATIONS AND OR MOANS WE ALSO HAVE SURGERY AS A MANAGEMENT OPTION.
SO NOT ONLY IS SURGERY DIAGNOSTIC, BUT IF YOU HAVE SURGERY WITH A SURGEON TRAINED TO EXCISE THAT ENDOMETRIOSIS, OR TO REMOVE IT AT THE TIME OF SURGERY, THAT IS ALSO THERAPEUTIC.
ALI: DR. LAURA HOMEWOOD, GYNECOLOGIC SURGEON AT UVA HEALTH, THANK YOU SO MUCH FOR YOUR INSIGHTS.
DR. HOMEWOOD: THANK YOU.
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Learn Moreabout PBS online sponsorshipMajor corporate funding for the PBS News Hour is provided by BDO, BNSF, Consumer Cellular, American Cruise Lines, and Raymond James. Funding for the PBS NewsHour Weekend is provided by...