Nurse With Endometriosis Shares Painful Journey To Diagnosis | TODAY


>>>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 CAN’T BREATHE.>>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 ENDOMETRIOSIS. 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. IT IS PARAMOUNT TO PROPER 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

14 thoughts on “Nurse With Endometriosis Shares Painful Journey To Diagnosis | TODAY

  1. I suffered with endometriosis for almost ten years before I was properly diagnosed. It wasn't until I had surgery to remove fibroids that it was discovered. By that time, it was extensive, involving my reproductive organs, bowel, bladder and urinary tract. Adhesions had fused things together so that nothing could work properly. The worst part of it was having doctors who were so dismissive of my pain and symptoms. Laser surgery finally brought me relief, but it couldn't repair my infertility. I was fortunate to go through menopause early, because it slows down or even stops the growth of endo. Menopause has been a new lease on life!

  2. Wow crazy my friend had this is the 1980s here in Portland Or. She was diagnosed and treated with orthosopic surgery way back then. What the heck? That's 35 years ago.

  3. Endo is not a uterine disorder… it is an ectopic condition where tissue SIMILAR to the lining of the uterus is found outside of the uterus. Hope you can spread the correct information.

  4. I was diagnosed with this my doc put IUD IN MY PERIODS STOPPED thank GOD AND THE PAIN WENT AWAY WHEN MY PERIODS DID I ALSO HAVE PCOS BUT THE IUD ONLY LAST 5 YEARS : (

  5. I was diagnosed at 21. I am 27 and I have pain on my right side everyday. On top of this I have a bladder condition called interstitial cystitis.

  6. I think doctors have a bias towards believing women when they say they’re in pain. People in general tend to think women are just emotional and/or wusses. So they usually just think we’re exaggerating when we tell them our symptoms.

  7. It took 10 years for me to get a diagnosis via surgery. 10 years of excruciating, debilitating, non-stop pain. And then my pain continued after excision surgery; so I was bamboozled into doing 6 months of Lupron, which is an FDA cleared poison that should be illegal (fun fact: Lupron was only FDA approved to treat stage 4 terminal prostate cancer in MEN).

    Lupron ruined me, my life, my marriage, my everything. It changed me permanently, and I'll never be the same. It even gave me a prolactinoma, which is a brain tumor on my pituitary gland- confirmed by my neurosurgeons and endocrinologist to be a direct result of Lupron. This disease has taken everything from me- and left only pain and destruction in my life.

    Lupron caused me to have such bad depression that I nearly killed myself. But then I found my hope in the darkness: pelvic floor physical therapy. If you have endometriosis, get into a pelvic therapist right away! It will change your life only for the better, and in a monumental way. Pelvic physical therapy is the ONLY thing that takes the majority of my pain away, and they teach you techniques to do at home to keep it away.

    To all my suffering sisters:

    -Demand action
    -Find an excision specialist (check out EndoFound.com for their list of qualified excision surgeons and other incredible info)
    -Always say NO TO LUPRON!!!!
    -Start seeing a pelvic floor physical therapist
    -Eat a clean, healthy diet (lookup the Endo diet) and exercise as much as you can tolerate

    Never stop seeking and demanding answers and action. It's up to us. Don't suffer in silence. You are not alone. You are loved. And you don't deserve to live in pain. We are worth more.

    Fight back. 🔥❤🔥

  8. My endometriosis symptoms were: cistitis like symptoms very often, like every 2-3 months, bleeding when sexual contact. For 2 years was treated for cistitis until I refused to believe it so I was finally suggested to see the gyno. The gyno only with these 2 symptoms said she thought I had the endometriosis but required a laparoscopia. At my first laparoscopic -2 days after seeing the gyno-test was found around 5 locations of the endometriosis on the uterus and ovaries. No pain until years after the diagnosis, endometriosis must have developed somewhere around the colon. But the pill stopped the pain. The pill works for me.

  9. I had severe endrmendreos massive pain
    Wasn't diagnosed until I had a cyst blow
    15 years after cycles started I did not know what was a normal cycle

  10. I used to vomit and pass out with the pain and after 4 surgeries I still ended up infertile, but now the mother of a beautiful daughter after adopting.
    Endometriosis was never heard of here in Ireland so I got on the web and discovered myself what the problem was.

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