Secret Suffering: Teens With Endometriosis And Years Of Baffling Pain

Emily Hatch and her mother, Mary Alice Hatch

Emily Hatch and her mother, Mary Alice Hatch

For Emily Hatch, the pain started during a Taylor Swift concert in the spring of 2010.

During the very first song — “You Belong To Me” — and without any warning, Emily, then 13 years old, felt a stabbing pain below her belly-button unlike anything she had ever experienced. She clutched her stomach and doubled over, but that didn’t help. Before the song ended, she was rushed by wheelchair to an infirmary at the Boston stadium and her father was summoned to drive her home. “The pain was so bad I couldn’t stand up,” Emily recalled. “It was so sad because I’d been looking forward to the concert all year.”

That was the start of a medical odyssey in which the teenager from Wellesley saw seven specialists, underwent numerous invasive tests including a colonoscopy and endoscopy, and endured countless needles and scans of her body. Despite all that, her mother says, her underlying diagnosis eluded top experts at three major hospitals. At least one doctor told Emily she’d just have to live with the terrible pain. And while she was shuttling between doctors and missing school, Emily tried to keep her condition a secret, not telling friends because, well, she’s a typical teenager. “I just didn’t want to feel different,” she said.

Finally, after 18 months without a firm diagnosis, Emily and her mother, Mary Alice Hatch, found a doctor in Boston who was able to treat her.

In October, at age 14, Emily underwent surgery at Children’s Hospital Boston and only then learned she had Stage II endometriosis. Emily’s surgeon found significant red and white lesions in her pelvic cavity; her left ovary had effectively become fused to her pelvis. Today, she is still not entirely pain-free, but at least she knows what the problem is.

A Painful Secret

Endometriosis is often perceived to be a disease of adulthood. Years ago it was cast pejoratively as “a career woman’s” condition that mostly hit older women who had delayed child-bearing. But in fact, endometriosis frequently begins in adolescence. It can be passed genetically from mothers to their daughters; there is no cure.

Endometriosis occurs when cells that normally grow in the lining of the uterus (endometrial cells) start growing in other parts of the body: the abdominal cavity, ovaries, fallopian tubes, bowel, bladder or the area between the vagina and rectum, for instance. In rare cases these cells have been found growing in the brain or lungs.

This misplaced tissue, unlike normal uterine lining cells, has no pathway out of the body during menstruation. The resulting lesions can become intensely painful and cause scarring, inflammation, bowel and other problems. Advanced endometriosis can result in infertility.

Endometriosis occurs when cells that normally grow in the lining of the uterus start growing in other parts of the body. (Illustration courtesy of Children’s Hospital Boston)

The causes of endometriosis remain a mystery, and the growths generally can be detected only through surgery. Experts don’t know if women are born with these cells in the wrong location, whether the cells actually migrate or if the condition is caused by some disorder of the immune system. “One theory,” notes an NIH website, “is that the endometrial cells shed when you get your period travel backwards through the fallopian tubes into the pelvis, where they implant and grow.”

More than 6 million women in the U.S. suffer from endometriosis, according to rough estimates. And though most women with the disease say their symptoms started before the age of 20, endometriosis, while common, is greatly under-diagnosed, particularly in teenagers. No one knows exactly how many teens suffer from the condition but according to the medical website UpToDate, the “disease has been reported in 25 to 38 percent of adolescents with chronic pelvic pain.”

And because it falls under the rubric of “women’s troubles” — even worse, teenage-girl troubles — it can take patients and their families years to get the right doctor to pay attention.

In that regard, Emily’s case is not atypical. “Unfortunately, people don’t realize that this can affect young girls,” said Emily’s doctor, Marc Laufer, Chief of Gynecology at Children’s Hospital Boston and the Center for Infertility and Reproductive Surgery at Brigham and Women’s Hospital.”

Consider these numbers from one 2004 study:

  • “Forty-seven percent of the women reported having to see a doctor five times or more before being diagnosed or referred. Those with the earliest onset of symptoms had to see the most doctors to reach diagnosis…”
  • “Overall the delay between onset of symptoms and actual diagnosis of the disease was 9.28 years. Part of the delay was that the girl/woman took 4.67 years, on average, to report her symptoms to a doctor. Subsequently, the doctor, on average, took 4.61 years to diagnose the disease.”

In financial terms, one analysis estimated that endometriosis cost the U.S. $22 billion in 2002, including hospitalizations, loss of work, surgery, and medications.

Falling Through The Cracks

Adolescent endometriosis tends to fall through the cracks for several reasons, said Dr. Laufer. First, he says, many gynecologists aren’t comfortable performing surgery on 12-, 13- and 14-year-olds and there simply aren’t that many pediatric gynecologists in the country. Laufer, an internationally known expert on adolescent endometriosis, performs five or six such operations weekly.

Also, he says, the population that suffers from the condition is not prone to trumpet their intimate problems to the world. “It’s a disease that affects young women, specifically, adolescents who don’t know what the norm is. They don’t want to complain; it’s an age where you don’t want to feel different or stand out. If you’re having pain and can’t participate in gym or school, you don’t want to complain, you just deal with it.”

That’s what Emily intended to do, but her pain became unbearable.

After the Taylor Swift emergency, Emily’s mom made an appointment with the pediatrician. The doctor couldn’t pinpoint the source of the pain, but suggested it might be a gastrointestinal problem.

A Mom Goes Online

Unsatisfied with such a murky non-diagnosis, Mrs. Hatch did what many mothers do when their child is suffering inexplicably: she went online. There she found a top GI doctor at Children’s Hospital Boston. He examined Emily, ordered an upper endoscopy and said she was suffering from Irritable Bowel Syndrome and suggested some dietary changes, Mrs. Hatch said.

Undeterred, Mrs. Hatch took Emily to see another top GI doctor, this one at Massachusetts General Hospital. After a battery of tests — X-Rays, an MRI and a colonoscopy — the MGH physician put Emily on two medications and sent her home, but, Mrs. Hatch said, her daughter’s pain just kept getting worse.

In July, 2011 she decided to fly with her daughter to the Mayo Clinic, in Rochester, Minn. to seek yet another expert opinion. “My family has given big grants to Mayo Clinic,” Mrs. Hatch said. “So we have that connection.” (Mrs. Hatch comes from a prominent family: She is the granddaughter of J.W. Marriott, the hotel-chain founder, and the daughter-in-law of U.S. Sen. Orrin Hatch.)

Their planned 4-day trip turned into a two-week nightmare after a Mayo Clinic GI specialist told Emily she had a “pelvic floor disorder” and prescribed pelvic muscle exercises three times a day, Mrs. Hatch said. This, says Emily, caused horrible constipation, and little relief.

Mary Alice Hatch took her daughter to seven specialists before getting a definitive diagnosis.

By this point, no one had suggested that Emily see a gynecologist; Mrs. Hatch said it crossed her mind since the pain had started right after Emily’s first period. So she asked to see a gynecologist while at the Mayo Clinic. At the appointment, Mrs. Hatch raised the possibility of endometriosis because a friend had mentioned it in passing. But, she said, the Minnesota gynecologist was non-committal. “She said, ‘You could try birth control pills and see if the symptoms subside.’ But she wasn’t definitive.”

A $16,000 Bill But No Answers

All told, the travel and medical bills for the Mayo Clinic trip were $16,000, which Mrs. Hatch paid out of pocket. But, she said, “I had a sinking feeling about the whole thing.”

Meanwhile Emily, who by now had finished 8th grade and was about to start high school, continued to endure excruciating pain.

“It was really frustrating,” said Emily, a sweet, sandy-haired young woman, who told me her story at the dining room table of her home in the Boston suburbs, offering up her favorite gluten-free popcorn and downplaying her ordeal in typical teenage fashion. Of her initial pain at the Taylor Swift concert she said: “It was quite terrible — not going to lie. But I get to see her music videos on YouTube, so all is well.”

Over the course of one year, Emily missed three months of school and had to go home early every day. She was forced to quit soccer and curtail her other favorite sports.

“I was constantly in pain, all day, everyday, there wasn’t a full day where I just felt great,” Emily said. Still, she kept her condition a secret. “A lot of my friends didn’t know I had this,” she said. “I just didn’t want to feel different. High school is really judgmental. You tell one person something and it just spreads.”

(After speaking with me, Emily had second thoughts about going public with her condition, but ultimately decided that she wanted other kids to know more about it, so they might avoid enduring what she did.)

For Mrs. Hatch, the lack of a definitive diagnosis and a clear treatment plan was particularly troubling. “It was so isolating,” she said. “You wonder, ‘Am I doing the right thing?’ I mean, this is affecting her socially, mentally, physically, and as a parent you feel helpless: you’re doing everything, you’re going to the best doctors, and you still can’t get an answer.”

Before Mrs. Hatch put her teenager on birth control pills, she took Emily to yet another specialist at Children’s Hospital. Again, the response was demoralizing. Mrs. Hatch said that doctor told Emily she was experiencing “functional pain,” a sort of phantom phenomenon in which earlier pain has actually subsided, but the nervous system still fires off pain signals. Mrs. Hatch said the doctor told her daughter she’d just have to “learn to live with her pain.”

A Clear Diagnosis

Given the medical impasse, Mrs. Hatch decided to find a pain therapist. Almost immediately after she got one on the phone, the doctor said: “I think your daughter has adolescent endometriosis. You need to go to a gynecologist.”

Emily and her mom describe their initial interactions with Dr. Laufer, the Children’s Hospital gynecologist, as filled with an almost magical good karma. Laufer was the first name to come up in Mrs. Hatch’s Google search; then, after their first meeting he had a cancellation at the last minute that got them on the surgery schedule. Finally, on the drive to town: “We hit all the green lights going in to Boston — that never happens,” Emily said.

Laufer performed the surgery laparoscopically, making two incisions, one in Emily’s belly-button, the other just above the pubic region. The goal of the surgery is to remove all of the lesions, even the subtle ones. Shortly after he was done, in less than an hour, Laufer announced the diagnosis: Stage II endometriosis. “We can’t cure this disease,” he said. “But our goal is that a woman be completely functional, and can compete in all activities — equal to men — so they don’t feel disadvantaged.”

Now, Emily takes hormone pills that prevent her from getting her period until she wants to have a baby. To control her pain flare-ups, Emily continues to do physical therapy, and visits the Children’s Hospital pain clinic three times a week. Her regimen also includes Reiki, a technique for stress reduction, Cognitive Behavioral Therapy and acupressure. “I think all of this does help, because it relaxes her body, and allows her to better deal with the pain,” her mother says. “But it’s a brutal disease.”

After the surgery, Mrs. Hatch approached Laufer, who also oversees an annual conference on endometriosis for teenagers and their families to share stories and new data, and asked what more she could do to help hasten research that might ultimately lead to a cure for the condition. “I asked him what his dream would be,” Mrs. Hatch said.

She said she then approached her father and uncle, who run the J. Willard and Alice S. Marriott Foundation, which gives money to a variety of causes, including in the medical arena, to see how the organization might support future endometriosis-related research. Stay tuned for more on that soon.

Emily will probably continue to struggle with some level of pain for years. Still, she says, understanding her condition and continuing treatment have been critically important. “I had never heard of endometriosis before…and a lot of people don’t know about it,” she said. “There have to be some people who are open about this so they can influence others to go see a doctor. If I can help girls out there like me, I might as well.”

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  • Kierstin

    I got my first period at 12. It was fine, no pain nothing. That quickly changed. The next time was worse and the one after that even worse. There would be days I took 5 Advil at a time and went about my day because i had to. 4 hours later i would pop 5 more Advil. My pain just kept getting worse. My periods would last 6-10 days with pain from 2 days before to 2 days after. My mom had had endo and suspected I had it, so we talked to my doctor who agreed that it was a very likely issue. Not long after that my mom packed us up and we spent a weekend in Atlanta. We visited the Center for Endometriosis Care (CEC). The CEC is the center that did one of my mom’s surgeries, the last one where they finally got all the Endo out, so she was very comfortable with Dr. Albee and Dr. Sinervo. Dr. Albee suspected I had Endo too. That December I had a excision laporospic surgery. My colon was adhered to my side along with other lesions. Dr. Albee also removed my appendix which was deformed. If you even suspect you might have Endo please contact the CEC, even if it is only for a case review. Here is the Link: http://centerforendo.com/index.htm I am 18 months pain free!

  • Sara Morrison

    My name is Sara and I have been living with endometriosis for almost 9 years of my life. I had issues with my menstrual cycles ever since I first had them when I turned 11. When, I first got my first “period” I ended up doubled over in pain.I couldn’t stand up it hurt so bad. I refused to eat, drink, or sleep for the next 5 days. After this happened, my mom and I didn’t think much of it since it was the first time I started and it was the first time it happened. So, 4 years pass and within those 4 years I had been on 5 different birth controls and I had to of missed at least an equivalent of 6 months of school due to staying out for a week at a time when my “period” had come. I couldn’t get out of bed, all I did was sleep. Nothing helped the pain but to sleep. My mom called around and got me into an OBGYN and there we found out that I had endometriosis. At age, 17 I was afraid. I didn’t know what this was. I didn’t know what they were going to be doing to me. I didn’t know anything. All they told me was to look it up. That didn’t help. Well, I had my laparascopy in 2011, and thought things would get better. Well, they were for a while. I soon started getting the depo shot ( I believe that’s what it was called) and it made me feel alright….the only thing was…it made me put on 65lbs within a year! I stopped the depo and got an implanon placed into my left arm to see if that would help. I’ve lost the weight and now it just isn’t working. I don’t know what steps are going to be taken next but, as long as I can find the path to feeling better and later on in life having the chance at having a family with my future husband, then that is ok with me. I feel alone a lot of times because, as far as I know, I was the youngest one to have been treated with endometriosis and to have it for such a long time and not know about it. Now, I am here to find others like me that want to find someone to talk to that shares the same condition (if you will) and won’t be afraid to share their experiences.

    • Kierstin

      I understand how you felt. I had surgery for Endo at 13 and didn’t know what to expect. I am now 18 months mostly pain free. I am no longer taking 3-5 Advil every 5 hours.

  • Brianna Cabral

    Thank you for trying to help with the research by possibly donating money as I can not afford that. I started having pain before after and during my cycle right after it started at age 13-14ish. I had such heavy bleeding I would change a heavy overnight pad every 30 minutes and the cycle would las a week be off maybe a few days then start again. The pain I has was above the belly bottom stabbing and mostly at night but I had cramps all the time above the belly button. Everyone said my cycle hadn’t evened out yet but after a few months my mom knew it wasn’t normal. I have up swimming because I was bleeding so much but roughed it out in school, embarrassed to use the bathroom and worried I’d leak through my pants. After a trip to thenER for hemorrhage and a trip to my moms gyno, I was referred to Dr. laufer. My moms gyno also had an exploratory surgery done to see if she could see anything and then out two and two together. I was born with one kidney with tends to lead to reproductive problems as both those are formed at the same time in the womb. Dr. Laufer found the lesions I had and scheduled surgery. Since then I have been on birth control hormone treatment. I am now 22 and am very thankful for Dr. Laufer’s help, fast diagnosis, and for the diligence of my mom and doctors.i hope other girls will seek help and learn from our struggles.

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  • Lauren

    I am 15 and my pain started about 8months ago now, I have been in and out of the hospital and back and fourth to the doctors constantly. I have missed loads of school and have had to cope with loads of questions from my classmates asking why I’m always off school. I have spent so long in fear of what the problem is, my already ill mother has been worried sick about me. After 3 scans that show nothing and the constant back and fourth of doctors saying it’s just period pain or IBS or even polycystic ovary syndrome, I have been told it’s most likely endometriosis. It’s the first time I’ve heard of this problem from anyone, which is bizarre because all the symptoms match up. I am very shortly going to have a laparoscopy to check to see if this is the case and to take action. If I was older, this idea would of been brought up sooner, if my parents weren’t as persistent I would still be in agony with nothing being done about it. Thank you to the gynaecologist who actually decided to help me.

    • Maddy Butts

      My story is somewhat similar. Stay strong!

  • Carol Drury

    Emily will be speaking about her experience with endo in Boston at the Boston Public Library (Copley Square) on Wednesday October 16th from 6:00-9:00 PM. The event is free, but reservations are required. RSVP to Mary Ann at maryann@EndometriosisAssn.org or 414-355-2200. Scientists will discuss genetic, lifestyle, and environmental aspects of endo. The panel will be moderated by Mary Lou Ballweg, Founder and President of the Endometriosis Association, who will be available to sign her books.

  • Sara Jones

    I first got my period when I was 11, I’m now 17 and I had the most horrible pain. My mum said it’s bad at the beginning but eases out, this is the case for most normal people but nor for me or my mum. My mum thinks she has endometriosis because she’s always had so many of the symptoms and so much pain, although she’s nearly at the menopause. My pain did not subdue and now I have a lot of the symptoms too. I don’t want to go to a doctor because of so many miscalculations and procedures, I’m going to accept the fact that it is a very very probable factor and ignore the surgery. Doctors are very judgemental and horrible about this subject and I do not have the emotional strength to go through with these procedures. I am very convinced I have it though because it is a common disorder and I have so many symptoms. When I was 15 I went on the Pill and it did help massively, the pain isn’t as a bad as it was although sometimes it is so bad it still makes me want to throw up but it now only lasts for 4 days instead of 12 so that’s good for me. As for the lower back and pelvic pain-nothing’s changed, it might have actually got progressively worse.

    • Sara Morrison

      I started mine at the same age as you and have had to deal with this for almost 9 years of my life. I am 19 years old now (going on 20) and I still have the pains, I still get the back pains, the headaches, and double over. You’re a strong woman. You’ve been through a lot and if you trust the dr.s enough they can help you. I am learning now, (I too, was afraid the drs couldnt help me) that they can help you as long as you’re willing to do as what they need to help yourself. If you ever need anyone to talk to, I am here for you. :)
      ~ Another Sara

    • Kierstin

      The doctors at the center for endometriosis are amazing! I went there a
      year and a half ago at 13 and had a laparoscopy. I am now pain free and
      never once felt judged. My mom had endo and the doctor who did my
      surgery also did hers. He has specialized in endo care for upwards of
      ten years.

  • jen

    I have the same problem it all started when I was 9 the first time I got my period and I need to look into endometriosis because i’m 16 now and I have had so many procedures some doctors tell me i’m crazy and to live with the pain and all the same tests I had a endoscopy colonoscopy twice, hida scan, many sonograms which they found an ovarian cyst so big it was stretching out my ovary and so many needles that I have scars from them. I honestly cried when I read this article because it is what my life is like and I just want to be a “normal” teenager.

    • Kierstin

      I got my first period at 12. It was fine, no pain nothing. That quickly changed.
      The next time was worse and the one after that even worse. There would
      be days I took 5 Advil at a time and went about my day because i had to.
      4 hours later i would pop 5 more Advil. My pain just kept getting
      worse. My periods would last 6-10 days with pain from 2 days before to 2
      days after. My mom had had endo and suspected I had it, so we talked to
      my doctor who agreed that it was a very likely issue. Not long after
      that my mom packed us up and we spent a weekend in Atlanta. We visited
      the Center for Endometriosis Care (CEC). The CEC is the center that did
      one of my mom’s surgeries, the last one where they finally got all the
      Endo out, so she was very comfortable with Dr. Albee and Dr. Sinervo.
      Dr. Albee suspected I had Endo too. That December I had a excision
      laporospic surgery. My colon was adhered to my side along with other
      lesions. Dr. Albee also removed my appendix which was deformed. If you
      even suspect you might have Endo please contact the CEC, even if it is
      only for a case review. Here is the Link: http://centerforendo.com/index.htm I am 18 months pain free!

  • Pippy

    I was twelve years old when I finally found a doctor willing to listen to me. I started menstruating at 10, and experienced excruciating pain from the beginning. I had to drop out of school, be home-schooled for a year, and went through the same endoscopy’s as Emily. I was even told by one doctor that “all twelve year old’s are wimps”. It took two years to finally find someone that would do something. At 12, I was diagnosed with endometriosis with lesions the size of a quarter on my uterus. At 14, I was diagnosed with adenomyosis. Just because it isn’t “common” doesn’t mean it can’t happen. I’ve been through over a dozen different oral contraceptives, Depo-Lupron, and finally Librel. I’ve had two laparoscopic surgeries among multiple exploratory. I’m not 21 years old and have been told that it is very unlikely I will be able to conceive. This isn’t something to ignore. It is an issue, and I, for one, am grateful that Emily’s story is out there. I only wish it had come much sooner, not just for me, but for other’s like me.

  • Cathy

    Hello I have a 15 year old daughter who just this week started suffering with pelvic pain. This was her first month on oral birth control to help regulate her cycles and lessen the days. Well now she has been out of school for this entire week with pelvic pain. We have great pediatricians and they have sent her for an ultrasound which showed a lesion on her bladder and a cyst on her left ovary. We are now waiting to see a pediatric urologist in Atlanta today but no later than Monday. Someone mentioned this condition to me and I freaked. I had no idea a young girl could have this disease. I am scared to death and can’t wait to get some definitive answers. Reading your story has given me great information to take to any appointments. I am wondering if the birth control was a good idea or not, if I helped her only to open up a whole new can of worms. The guilt is eating me alive but I have to stay strong for my baby. I have never been more afraid of this possible diagnosis even when she was born premature at 31 weeks, weighing only 2 lbs and 6.6 oz. She was a fighter then and I am hoping she can and will continue being a fighter. She loves babies and I couldn’t bear it if she was not able to carry one for herself. How do you think the hormones will affect your daughter going forward. I have been told that they have been linked to breast cancer. Thanks for your blog.

  • Mom121863

    My 14 yo daughter has Stage 2 Endometriosis She had surgery in June 2012 performed by Dr Laufer! She has been on BCP since April. She has had her periods since she was 10. Since the age of 9 we have been in and out of ER’s for possible ovarian torsions etc. At age 13 she started having severe pain from mid cycle through her periods. I suffered from Stage 4 Endometriosis and suffered severe infertility so I knew this was probably endometriosis.I was not diagnosed until I was 31. So i made the appointment on my own and then told the pediatrician we were going whether he referred or not. Thankfully I have a wonderful pediatrician. She had been pain free for 6 months and now the disease has reared its ugly head again! Back to the ER and back to Dr Laufer. More med changes and more school missed! This is a chronic illness and must be thought of as such! School has been great working with us to make up work. It is frustrating for the teen and the parent but you really need to be the best advocate for your child you can be. We know this will be a life long issue to deal with and will try everything we can to help our daughter be able to live a somewhat normal teen age life! If you are able I would recommend Dr Laufer and Boston Childrens Hospital.

  • http://www.facebook.com/angaleena.lindsey Angaleena de Lindsey

    i have endometriosis and i have had it for a while. since i was 11 yrs old. it is painful n if i ever have a daughter she has a high risk of getting it. birth control pills did not work for me and i still suffer with pain daily. i hope getting mirena IUD will help me. (i have 2 boys already)

  • saireygamp62

    With good excision, hormone pills are rarely needed, unless you are controling cycles due to ovarian cysts or adenomyosis of the uterus. Still, they tried to remove all of the lesions and that is definitely the right thing to do. Medical therapy does not treat endometriosis,. Too many patients and doctors have been misled to believe it does

  • GMc

    I came across this article while searching for an endmetriosis specialist. While reading, this read like a script from my life during the past six years. My identical twin daughters have suffered from severe pain, nausea, month long periods, frequent hospitalizations, missed alot of high school and endured more scopes, CT Scans, and ultrasounds than I can count. We have spent tens of thousands of dollars in medical and hospital bill co-payments and our insurer has paid hundreds of thousands in billings. We were given numerous diagnosis from cyclical vommitting to stress due to their school and activity schedules and even been told by the childrens hospital and GI doctor that one daughters pain was psychological. Afterwhich, she would not let us know how bad the pain was until it was out of control and she began having progressively worst syncope spells. During their senior year of high school we were referred to a wonderful OBGYN who performed a laprasopy and laparotomy on one daughter to discover and remove as much as possible “abundant endometriosis”. My twins are now freshmen in college, experiencing menopause effects from Lupron. They also took aygestin but the side effects including depression and memory loss were intefering with their studies. As a parent I feel guility for not being more vociferous about an accurate diagnosis when they were younger. While I did convey the correlation between they cylce and the vomitting and pain episodes, it seemed to fall on deaf ears for years. Their OBGYN and a brilliant hospitalist have been instrumental in securing diagnosis and treatment for them. They did take BC pills and other treatments to stop their cycle but all were inneffective. We are now struggling to determine how to manage the ongoing pain and vomitting, and recently spent christmas day in ER being rehydrated and treated for pain while on Holiday. The toll this has taken on my daughters is painful for me as a parent. Kids their age should not be wondering about whether they will suffer from infertility or have regrets about not being able to attend the first college of their choice because of frequent medical issues. It is comforting to know however, that we are not alone.

  • Jessia Meyer

    Is their a way i can contact you privately. Im a 14 year old freshman. And i have a few questions.

  • Collene

    My daughter just went to Urgent Care on Monday (it is now Wednesday) they mentioned Endometriosis and then we were sent to the ER directly after. The hospital did a vaginal ultrasound and it was normal. It is now Wednesday, we visited our gynecologist and she also concluded the ultrasound looked normal. Also believes it could possibly be endometriosis. She is sending her medical records to UNC Hospitals Pelvic Pain Clinic for review to see if she is a candidate for the surgery. She has only had the pain for a week. It got worse this past Monday. While waiting she is alternating Tylenol and Advil, which helps. She is 18 and has been on b/c since she was fifteen. She has never had abnormally painful periods. So hoping it is not Endometriosis. But if it is it has not taken long to diagnose. We are very fortunate to have great doctors. So saddened it has taken some people years or even decades to be diagnosed.

  • Krystal Elliott

    This is exactly what I am going through right now. The doctors are telling me that the pain is all in my head and i know that its not. Ive been through tons of test!! I go to the Emergency room every week because of my pain. I can’t get pain medicine to work so im constantly stuck in bed crying and screaming in excrutiating pain. I am now 19 and Ive been dealing with this since I was 12 when I got my first period. Ive been tested for pretty much everything and they cant seem to find a answer. in the mean time my problems and pain just get worst and worst.I just can’t keep up with it. I am trying to convince the doctors to do the surgery for endometriosis but they wont do it and they tell me its too invasive for my age. This pain or this disease didnt take in consideration of my age so niether should this surgery. ive been to 100′s of doctors appointments ive seen like 5 doctors. Gyn doctors, urologyst, GI doctors and no answer. they believe its endometriosis and they said just take pain meds and birth control however they dont work for me! I miss work, school, i had to drop my college classes because i cant get out of bed most days. Its exhausting. People need to be educated about the disease. if i didnt know about the disease i probably would have gave up on figuring out whats wrong with me and just believe that it all is just in my head;. So right now im trying to find a doctor in maryland who is able and willing to do the surgery on me so i can live my life again. I was so shocked to read Emily’s story because it made me realize that im not crazy and that im not alone in this. Thank you for sharing your story. I hope I have luck with getting the surgury done like you did.

  • Kathy

    My Name is Kathy. I am 44 years old and was diagnosed with endometreosis when I was only 16 years old. I suffered terribly for many years. I had a full
    hystorectomy at age 35. I was fortunate to have 2 beautiful daughters but not befor having a number of miscarages. It is possible so don’t ever cut yourself short of the chance of having children! Befor I was diagnosed, the doctors just kept telling my mother that it was the flu or I was constipated. When all the test for the bowel come back normal, GET CHECKED FOR ENDOMETREOSIS!!!!!!!

  • Wendi

    I’m glad to here you got a diagnosis for Emily & her pain is being managed. This article has been very helpful. My daughter is 12 yrs old & has been in the hospital every month since February with terrible pain. They did surgery in June & she was diagnosed with severe endometriosis. She is still having several bouts of sever pain. Shes currently on birth control & an aromatase inhibitor but they are now considering starting her on Lupron shots. Im concerned about a 12 year old on this & the side effects. Anyone have any experience with Lupron?

  • Rosemary

    Thank you Emily for sharing your story. My endo started too when I was a teenager, at around 14, but it took over 16 years for me to get diagnosed. By the time I finally found a doctor who would listen to me and cortectly diagnose me, the endo had already damaged my uterus, both ovaries, both tubes, and various other areas in the pelvis and basically left me without the ability to get pregnant naturally. I’m so glad you were diagnosed early so hopefully they can prevent further damage and pain for you. Continue spreading the word and let’s hope we can find a cure soon.

  • Kjyates16

    I absolutely loved this article! I have endometriosis and I was lucky that my mum auntie and nan all have the same condition, so my mum knew exactly what she was looking for and took me to see a specialist straight away! Xx

  • Lori

     I also have a 17 yr old daughter who has had chronic pelvic and back pain for over 6 mnths.  She is scheduled to have laparoscopic surgery this month.  I can sympathize with the all that Mrs. Hatch and Emily have had to go through to finally get a diagnosis.  We were told by one gynecologist that my daughter couldn’t have endometriosis because the pain would only happen during her period and she experiences pain everyday.  This disease is so debilitating and there needs to be more consistent  evaluations for this disorder.  I also find that there seems to be a chauvinistic attitude towards females with any kind of pelvic pain.  It seems to be the norm for most doctors to expect that chronic pelvic pain is the norm for females.  This archaic attitude need to change.
    I would like to see a follow-up to this story.

  • Alyssa

    Is there a way that I can contact Emily? Does she maybe have a facebook of something? I am too a patient of Dr. Laufer’s. I was diagnosed when I was 15, I am now 19.

  • Jailynne

    I have been battling this disease for 16 years now, and finally got my diagnosis 12 years ago. My parents drained their savings to find me the right doctor and treatment with no luck. 4 surgeries and countless treatments later, I moved 1/2 way across the country to MA in hopes of being able to see Dr. Laufer (heard such positive things for years)…but it turns out that office will not accept Medicare or MA Medicaid (was told it was on the phone when 
    I called, that’s why I moved) and every other office I have been to gives me the run-around. How are people like me who are disabled due to this disease and horrid effects of certain treatments supposed to get proper care to regain their lives?

  • endometriosis patient

    There are a handful of specialists that *ONLY DO* endometriosis surgery, therefore they spend hours trying to remove *ALL* lesions.  Being on continuous birth control pills is only a temporary solution and does not alleviate disease if a complete surgery was not done to remove all disease.  To learn more, please see:  
    http://www.huffingtonpost.com/deborah-stambler/endometriosis_b_1373555.html   There is a very vibrant, closed online community with participation from the top endo docs that one can join at:  
    https://www.facebook.com/groups/278254388902031/

    • JayneCW

      Everything is only a temporary solution, there is no cure for endometriosis. The tissue can grow back and often does so even doing a complete surgery does not eliminate the disease itself. This is true also because the disease is counted in stages and one can can progress or take a step backwards in stages depending on the amount of growth and the scarring. It’s dangerous to be off continuous birth control because the suppression of estrogen is one of the ways to curb the growth of endometrial tissue. Without out there can be extensive scarring together of organs and also infertility. I’m not sure what you are advocating. Surgery is temporary too.

  • Joy

    I had endometriosis when I was 18 and then again in my late 20′s.  I had 2 laparoscopies by a well known endometrial specialist at the time.  It came back 10 years later, so had a 2nd surgery around 27, and in spite of 2 surgeries, it came back again in my late 30′s.  I was on the pill during this whole time ( well over 20 yrs) to suppress my periods, following the doctor’s protocol to keep it at bay.  The pain was excruciating when the endo was present, and the surgeries gave temporary relief in conjunction with the pill, having periods only once every 3 months.  I decided I did not want to have surgery a 3rd time.  And I no longer wanted to remain on the pill which gave me such unnatural menstrual cycles, surely that couldn’t be healthy either! 
    A boyfriend at the time mentioned he read that soy and gluten can exasperate endometrial symptoms.  I didn’t believe it, and ignored that info for well over a year.  I ended up changing my diet for other reasons though and began eating raw foods, which naturally eliminated the soy, and gluten ironically.
    Within 3 months of changing my diet, and having recently gotten off the pill, I had for the first time completely pain free periods.  I had never had that happen with the exception of the first initial months after surgery (which didn’t last).  I couldn’t even feel my period coming on, nor any pain AT ALL during it.  This was pretty miraculous for me!  
    Im now 41 and haven’t had children ( that’s suppose to be another cure).  I stopped eating 100% raw 3 years ago, but am high raw and still gluten and soy free.  My periods now come with very occasional, and slight discomfort.  When I eat a higher raw diet ( more greens/fruits)  my body seems to acclimate fairly quickly and my cramps (if any) are much milder or non existent, and when I eat less of these foods, the cramps reappear, but are still mild.  I have found a balance for myself that seems to have healed the endometriosis in an astonishing way.  Im not saying this is the cure for everyone, but it’s my own personal success story and has so empowering to have this kind of awareness around the impact that my diet has on my health.  It’s been one of the most amazing experiences to see/feel my body heal itself without having to resort to surgery or be on medication ( the pill) any longer.  It truly taught me that I hold the reigns to my heath and I no longer feel helpless around this condition.  

  • Tara – BePreparedPeriod.com

    What a wonderfully written post. We appreciate you sharing the painful process of getting diagnosed with endometriosis. It is truly sad to hear how long girls/women suffer before getting a true diagnosis.

  • christine

    I suffer from endometriosis as well. I was taking 2-3 sick days from work every month until I got a diagnosis (at age 33) and the magical cure: birth control pills. a/k/a “hormone pills that prevent me from getting my period.” Rick Santorum can try to pry them from my cold dead hands, but I don’t think I’d let them go.

  • http://www.fibrowitch.net Jan Dumas

    I went through the same thing and at the age of 20 I ended up being taken to the hospital for emergency surgery.  I was never brave enough to tell more than a very few people about my illness.  Emily I admire your bravery to do so. I’m 52 and I don’t have that kind of bravery now. 

  • Stephanie Mitchell

    I am 53 and I went through three surgeries before having my first childat age 30.  The first was removal of my left ovary, 2nd was the removal of 1/2 of my right ovay, and the third a four hour adhesion surgery.  I’m very lucky to have my two daughters. 

    I’m thankful Mrs. Hatch has made endomitriosis a mission of hers.  Women with this condition need advocates and her personal family story is one that will resonate with many women.  Thank you to Emily for her courage and taking her health journey public.

  • Leah

    Acupuncture is really successful at dealing with the pain from endometriosis.  I have many patients who swear by it.  pointandbalance.com
    -Leah

    • Coasinder

      Please don’t use a discussion on reproductive health as a jumping point for selling your business. That’s extremely disrespectful.

      • Sue

         I have suffered from endometriosis and will soon receive a laparotomy to remove the disease (a laparoscopy a few months ago was unable to remove it due to it being too extensive and severe).  I’ll be travelling to receive care from Dr. Hilgers, at the Pope Paul VI institute.  Dr. Hilgers provides complete cutting edge care and I very strongly and urgently urge anyone suffering from endometriosis or other reproductive diseases to contact his office.  He has developed techniques that greatly minimize the risk of scar adhesions forming due to surgery and continues to extensively research the area of women’s health.

        • Mary

          Thank you for sharing Sue. We just received blood hormone test results from the national lab so now my 21 y.o. dghtr is awaiting the date to head for the institute. She is presently suffering with constipation so now we ae exploring the world of enemas.

  • KR0722

    I know a great endometriosis pain management doctor in NY. she has been treating my wife for several years. http://www.kesselmaninstituteforpain.com Dr. Donna Kesselman. My wife had 3 excision surgeries and is finally able to function again with the help of her pain management doctor and surgeons.

  • Carriemegan

    I had the same odyssey with my teenage daughter also from Wellesley, she too went through the battery of tests, specialists, GI, pain, acupuncture, cognitive therapy…and Dr. Laufer.
    Fortunately, unfortunately, after 8 or 9 months, lots of missed school and activities and much pain, it was diagnosed as IBS. She is learning how to manage the ongoing pain with diet, exercise, yoga and therapy and occasional meds. It is so hard as a mother to watch your child suffer, but it takes the persistence of a mother to get to the bottom of things and advocate for much needed help. 

  • Coin

    I experienced similar pain but changed my diet to include mostly organic foods, including eliminating meat from my diet, milk products, and bread. Those three items contain the highest amount of additives. 3 years later and I do not experience the same pain at all ! It’s minor pain once a month but nothing like vomiting and being unable to move for 5 hours at a time. Also homeopathic remedies worked ! Essential oils like Ylang Ylang and Lavender. 

    • Guest

      While homeopathic remedies are great and should certainly be tried, with most cases of endometriosis if they aren’t treated with birth control and/or surgery there will be pain. It can be potentially dangerous to not treat it with such as it can result in serious scarring and more growth of tissue thus advancing the disease. I would recommend it as a side, but I don’t think advocating putting aside all medicine is a good idea.

    • Guest

      Also have you ever been formally diagnosed? It sounds like you had menstrual pain which lessened over time, which is great, but not the same as endometriosis.

  • Debra

    There IS already an international organization that has many resources for both young teens with endo and women who have been living with it for years. It is called the Endometriosis Association http://www.endometriosisassn.org/ in Milwaukee and is led by Mary Lou Ballweg, whose study is in one of the story links. The organization works with researchers and has an extensive volunteer outreach network. One of the important aspects of their work is the demonstrated link between endometriosis and exposure to environmental toxins, especially dioxin, and the presence of candida (yeast) which may trigger certain kinds of symptoms.

  • http://www.facebook.com/people/Dee-Beckham/100001115761954 Dee Beckham

    It is a also so misunderstood. Unless you are a sufferer people have a tendency to think you are just a cry baby. I have suffered with this condition since about 12, I am now 46. There have been times I have actually passed out from the pain. Thank goodness I had an understanding mother, I would miss 1 to 2 days of school once a month. Endometriosis is PHYSICAL and not a mental condition. Thank you for getting the word out!

  • jkschmaltz@comcast.net

    My experience in brief – horrible pain beginning at age 12. Missed schooling, wondering formyears if I was “normal”, more pain, worse pain, marriage, painful attempts at intercourse, separation and divorce, pain gets worse, marriage, stabbing pain, aunt who is a nurse suggests endometriosis, doctor, surgery, fertility treatments, more surgery, add a board so I can attempt to get in and out of family van, more surgeries for more clean out, fertility treatments, pain getting worse, more missed school only this time as a teacher, finally complete hysterectomy, scarring, more surgery, adoptions fall through, more surgery for nerve masses, adoption happens! but no time off allowed since not a vaginal birth, no more surgery for pain from scarring because it will only make it worse, increasing intestinal issues, another adoption! once again no time off and nothing about adoptions covered by insurance, abdominal pain shots and pain therapy, this is my life but I have an understanding husband and two children so I’m ok.

  • Kyora

    I had endometriosis from age 12, but it was not diagnosed till I was 21 & a senior in college.  Back then birth control pills were new in the US (1962), and I started taking them, and experienced what nearly pain-free periods were like.  Amazing.  But it was not a complete solution, and at 36 I had a hysterectomy.  Amazing.  I felt like a new person.  I had been infertile, but hopeful, before the hysterectomy.  After it, I adopted a child and was, and still am, so grateful for her.  My only regret is waiting so long to get a surgical, permanent solution to the endometriosis.  I suffered all those years for absolutely nothing.  I am horrified to learn that doctors are still so slow to figure out that a girl of 12 can have endometriosis.  

  • JLong

    I had a similar experience. Early in my teen years, I was put on birth control to regulate a menstrual cycle by an endocrinologist. I stayed on those pills without stopping until I was 30 and thinking about having a child. Only when I discontinued the birth control for several months – did I experience excruciating pain and other symptoms. I went to so many doctors – gynecologists, urologists, endocrinologists and so on. Many seemed to genuinely want to help, but they simply had no answers. I was diagnosed with chronic UTIs, pelvic floor disorder, and a disorder of the fascia. It was also suggested that the symptoms were psychosomatic or anxiety induced. I have often been told there was nothing to be done. Eventually, the pain made it nearly impossible to sit in the car or drive to work. Trips away from home often ended with trips to the ER. I desperately tried to hang on to my job during the worst of it. 

    It wasn’t until I started seeing a reproductive endocrinologist who actually put me back on birth control (with no promises that I would feel better) that the symptoms began to lessen. However, intermittent pain remained. Only when I proceeded with fertility treatments did things start to really change. I made that decision to move forward with the treatments not so much because I wanted to have a child (who would when already in so much pain)  – but I had a theory about all of my symptoms being hormone related. And I was determined to find an answer to my symptoms.

    Fertility doctors monitor their patients and hormone levels very closely (weekly and then daily basis) for an extended period of time.  Eventually some small scarring was discovered in the uterus etc. and the scarring was surgically removed (My guess is the scarring developed while I was off of the birth control). But the real relief came when I was put on high doses of hormones by undergoing an IUI and an IVF cycle. I am convinced that no matter what label you want to call it “endometriosis” or any other — THE CAUSE IS WHAT IS ULTIMATELY IMPORTANT here and the cause is a hormone imbalance. This means something different for each person. I was 16 when this journey started and I am now 35.  My concern now is finding someone to treat me post fertility docs. As there seems to be no one who truly specializes in this area unless you are trying to get pregnant.

    • endometriosis patient

      I am copying and pasting my post from above.  I hope it is helpful.  
      There are a handful of specialists that *ONLY DO* endometriosis surgery, therefore they spend hours trying to remove *ALL* lesions.  Being on continuous birth control pills is only a temporary solution and does not alleviate disease if a complete surgery was not done to remove all disease.  To learn more, please see:  http://www.huffingtonpost.com/…   There is a very vibrant, closed online community with participation from the top endo docs that one can join at:  https://www.facebook.com/group… 

      • Georgina

        Your link don’t work. 

        • endometriosis patient

          Sorry about that.  Go to the websites of the endometriosis foundation of america (EFA) and the endometriosis research center (ERC).  The EFA had a scientific conference earlier this month and videos are available on line on their website.  The ERC’s website and facebook page should have a link to the facebook discussion group.  Or, type in “endometriosis research center discussion group” on facebook.  

  • guest

    I had a similar experience. Early in my teen years, I was put on birth control to regulate a menstrual cycle by an endocrinologist. I stayed on those pills without stopping until I was 30 and thinking about having a child. Only when I discontinued the birth control for several months – did I experience excruciating pain and other symptoms. I went to so many doctors – gynecologists, urologists, endocrinologists and so on. Many seemed to genuinely want to help, but they simply had no answers. I was diagnosed with chronic UTIs, pelvic floor disorder, and a disorder of the fascia. It was also suggested that the symptoms were psychosomatic or anxiety induced. I have often been told there was nothing to be done. Eventually, the pain made it nearly impossible to sit in the car or drive to work. Trips away from home often ended with trips to the ER. I desperately tried to hang on to my job during the worst of it. 

    It wasn’t until I started seeing a reproductive endocrinologist who actually put me back on birth control (with no promises that I would feel better) that the symptoms began to lessen. However, intermittent pain remained. Only when I proceeded with fertility treatments did things start to really change. I made that decision to move forward with the treatments not so much because I wanted to have a child (who would when already in so much pain)  – but I had a theory about all of my symptoms being hormone related. And I was determined to find an answer to my symptoms.

    Fertility doctors monitor their patients and hormone levels very closely (weekly and then daily basis) for an extended period of time.  Eventually some small scarring was discovered in the uterus etc. and the scarring was surgically removed (My guess is the scarring developed while I was off of the birth control). But the real relief came when I was put on high doses of hormones by undergoing an IUI and an IVF cycle. I am convinced that no matter what label you want to call it “endometriosis” or any other — THE CAUSE IS WHAT IS ULTIMATELY IMPORTANT here and I believe that the cause is a hormone imbalance. And each individual is different – so it’s not one size fits all answer. I was 16 when this journey started and I am now 35.  My concern now is finding someone to treat me post fertility docs. As there seems to be no one who truly specializes in this area unless you are trying to get pregnant.

  • Bmcdaniel10

    I suffered from endometriosis for many years. I can’t even count how many surgeries I underwent including a hysterectomy. Even after the total hysterectomy endometriosis was still found to be spreading. I truly hope a cure is found so woman don’t continue to suffer!

  • Anonymous

    I just checked on line as to incidence of endometriosis.  One study said that since it often has no symptoms, it probably occurs in 5-20% of women.  Another said 25%. 
    Here’s WebMD.  Anyone else have reliable resources?   

  • EveT

    I guess I was lucky. Back in the 60s-70s, although the word “endometriosis” wasn’t used, after a couple of episodes of violent vomiting and fainting when I was 17-19 yrs old, I saw a Gyn who put me on birth control pills. In the 90s I again began having severe trouble and at that age, believe it or not, it was harder to get diagnosed and find a solution. A laparoscopy didn’t help. Birth control at that point gave me blood clots, involving trips to the ER and having to have paramedics board an airplane on the tarmac after I got sick during a flight. Menopause was truly a blessing.

  • Roxie1956

    NPR, thanks for this article. I had the head of OB-GYN at a major university tell my parents I needed counseling, that there was scarring but only a few lesions. !!  I had another doctor refuse to do a hysterectomy for ethical reasons, my age. After seven years of medication and surgeries, lost school time, and a quality of life from hell, I had the hysterectomy. For the first time, I could function (with only a little pain, most likely scarring).  I’m not saying this is the way for everyone, but the amount of involvement is not commensurate with the pain and I am glad I did it.  I was 22 and it was 1978.  

  • Monica

    I have given birth twice-in both cases completely drug free.  Not a single moment of the birthing experience even begins to approach the incredible level of pain I experienced due to my stage IV endometriosis. 

    Periods that cause one to be bedridden, to have bowel problems, nausea, sweating, fainting or tears are a medical condition, not just normal discomfort. See a gynocologist who performs laparoscopic surgery.  When I followed up with my surgeon after my first laparoscopy, I thanked her with tears in my eyes.  I was thirty three, pain free for the first time in twenty years.  It was life altering, and I resent wasting twenty years of my life telling myself to snap out of it, pop a tylenol and get on with life. 

    Surgery gave me back the life I always should have had.  Good luck!

  • Anonymous

    from age 13 to 31 I suffered extreme pain and cramping every month.  This left me, ultimately, nearly disabled for most of the month.  At age 31, I had a hysterectomy but even though I felt “I was handed my life back to me” I had a kind of PTSD response to the ordeal. I felt shell shocked and fell into depression, before, during, and after the surgeries, the 6 months nonstop (with no break for a period) on strong birth control pills.  It kept coming back. It affected my sex life greatly though the marriage held. 

    At that time there was little effective treatment.  It took me years to put my life back together.  To see that so little progress has been made in diagnosing and treating the next generation of girls/young women is disheartening.  If you count the level and extent of disability from endometriosis, it’s extraordinarily high.  Thanks for covering this little known condition.  

  • Ginsheena

    I’ve had endometriosis since I was 12. I suffered through years of debilitating pain before I was finally diagnosed through laparoscopy at age 30. I have successfully managed the pain through herbs, exercise and diet. Vitex has been my life saver (see the endo tea recipe by Rosemary Gladstar.). I’ve also used acupuncture. I’m very happy people are getting the word out and I pray one day most women and girls will be free trombones type if needless suffering.

  • Alison Toback

    I wish that I had been diagnosed in high school, which is when all of my horrific symptoms started.  I wasn’t diagnosed until I was a freshman in college and it was only after I insisted to at least 3 or 4 doctors that I wanted to be evaluated for endometriosis.  I was diagnosed with severe pelvic endometriosis, which was lasered off, and since then I’ve been on hormone injections and an extended-OCP to keep the symptoms at bay.  I am hoping that it didn’t ruin my fertility, but my current physician (who is excellent) says we’ll just have to wait and see.

    I am so sorry that Emily had to go through this and felt like there was no one who understood.  Hopefully, medical research will give young women a better chance at getting diagnosed sooner.  Good luck to her, and thank you for writing this article.

    • Monica

      Wouldn’t it be great to have an online community specifically developed for teens with endometriosis.  Hearing stories like Emily’s would have helped me greatly in my teens, and likely would have spared me years of pain and self judgement.  There seems to be little or no education around what is “normal” on the spectrum of mentrual pain in particular and pelvic pain in general.  Fodder for thought – what is our role, (as those priviledged enough to have recieved a diagnosis) in raising awareness about this condition, particularly for young women? Thank you for sharing your story – as for the infertility, I’m not a flakey woman but after three failed IVF’s and countless courses of ovulation stimulating drugs, our first child was concieved completely naturally.  There are positive stories out there and I hope that yours is one day added to that list.

      • BellaMoe

        There is not enough information or support out there about Endometriosis.  Even many doctors don’t know enough about it.  I have had Endometriosis since I was a teen….just getting diagnosed now at 43.  Countless days night of pain, swelling, tears, bleeding, agony and it’s true. The world treats you like a cry baby because we are taught periods are support to be painful!   Not true!!  It is not normal to break into sweats and pass out from pain. It is not normal not to be able to walk or sit or stand for more than 10 minutes without tears in your eyes from pain! Emily is lucky her family had all the money, resources and, lets face it, took their daighter’s pain seriously.  For the majority of women this is not the case. The average is 9 years to get diagnosed!  We need to campain for awareness and research to understand this disease!

    • endometriosis patient

      Lasering only burns the disease, making it harder to treat in the long run. For more info, I am copying and pasting my post from above here:   

      There are a handful of specialists that *ONLY DO* endometriosis surgery, therefore they spend hours trying to remove *ALL* lesions.  Being on continuous birth control pills is only a temporary solution and does not alleviate disease if a complete surgery was not done to remove all disease.  To learn more, please see:  http://www.huffingtonpost.com/…   There is a very vibrant, closed online community with participation from the top endo docs that one can join at:  https://www.facebook.com/group…

      • Coasinder

        Again, what are you advocating in stead of a surgery where the tissue is burned and continuous birth control? I responded to another of your posts and I’ll respond again. A complete surgery will not prevent the tissue from coming back. Endometriosis can not be “extinguished” and thus gone forever. It is a continuous disease in that the tissue, though destroyed once, can return and if left untreated and unchecked can progress to a stage where infertility and extensive scarring are a danger. Continuous birth control while temporary in that it does not cure the disorder can stop tissue growth so that after a surgery where it is removed the disorder stays at the point. This is why menopause brings relief to most women because it results in the end of the menstrual cycle and growth of that tissue and the suppression of estrogen.

  • kz

    Having struggled with what I now know is endometriosis since my teens, I understand how embarrassing and painful it can be to have no way to explain away that pain.  One doctor told my parents it was psychosomatic and there was nothing wrong with me.  It’s awful to endure all those tests and have no answers.  I’m so glad she’s gotten the treatment she needs.  Managing the pain is sometimes all you can do, but knowing there’s a cause makes it less scary.

  • kelty

    It is good to see that Emily was diagnosed and is being treated. I wish her all the best for her health in the future.

    I must say thought, stories like this always make me think about women who don’t have health insurance or the finincial ability to keep going to new doctors to get a correct diagnosis for this type of condition. Its sad to think that money, instead of health, is the main driver here.

    • Monica

      Kelty, I agree with you – I’m a Canadian, and have had four laparoscopic surgeries in the past decade.  Cost to me?  A $40 gas bill, $20 to park and about $50 worth of prescription painkillers.  All scans, tests, etc. were covered 100% by our public medical system.  My heart breaks for anyone that simply can’t afford this simple, three hour outpatient procedure.  I know healthcare is a hot-potato in the US, but surely there must be a way to afford this basic procedure to uninsured minors.  Discussions such as those going on here are invaluable in promoting awareness of this condition, and the inequities of diagnosis and treatment that exist for those suffering from it. Thankyou for your valuable voice.

  • pat

    I’d like to know the names of all the doctors who misdiagnosed the problem.

    • http://pulse.yahoo.com/_FRKAEIA2MOTPFCR3FYADUP6YIU Mark

       Why? Do you think doctors should be perfect? Diagnosis of a symptom like pain must be about the most difficult to make. How many different causes do you think there could be when the only symptom is abdominal pain? Maybe if the mother had stayed with one doctor instead of expert-shopping, the condition would have been diagnosed correctly sooner. Personally, if I went to the doctor complaining of pain, I wouldn’t be surprised if it too a couple of tries before it was figured out. I don’t expect doctors to be gods, and I don’t think that every incorrect diagnosis is a crime against humanity. Diagnosis is a process of ruling out possibilities, not going through a file cabinet of correct answers to pull out the right one.

      Please note that one of the doctors suggested birth control pills. And what are birth control pills recommended for? Endometriosis! And now? She takes ‘hormone pills’ that suppress menstruation. In other words… birth control pills.

      The fact is that this poor girl came down with endo at the earliest possible age. It shouldn’t be surprising that doctors didn’t have this condition at the top of their list.

      And this: “And because it falls under the rubric of “women’s troubles” — even
      worse, teenage-girl troubles — it can take patients and their families
      years to get the right doctor to pay attention.”

      Really? Are we really to believe that doctors don’t care about women’s health and well being? Really? Putting aside the fact that medicine is full of woman doctors today, how do you type out those words with a straight face? Do you really think that people go into medicine with such a grotesque attitude? Think about it. “Ah… I’ll just let half my patients suffer – they’re only women!” Seriously? Shame on you.

      • Rachel Zimmerman

        I asked Dr. Marc Laufer to respond to Mark’s comment. Here it is: 

        To date, the youngest patient that I have seen with endometriosis is 8 years of age.It is not uncommon for  children and young adolescents with gynecologic issues to have difficulty finding appropriate care, since many pediatricians have limited gynecologic experience and many gynecologists are not comfortable taking care of children and young adolescents.  The field of pediatric and adolescent gynecology is a relatively new one.Marc R. Laufer, M.D.Chief of Gynecology; Children’s Hospital Boston;Center for Infertility and Reproductive Surgery, Brigham and Women’s Hospital;Associate Professor of Obstetrics, Gynecology and Reproductive Biology, Harvard Medical School

      • Anonymous

        your reply is insensitive and unkind.  As a male, butt out.  You have no idea what an ordeal this is, how debilitating.  This is insulting.  

        • Monica

          In no way supporting Mark’s comments (which I agree are unkind, but he does have the right to make):
          I think men do pay a role here; most young women will have more than one boyfriend, and likely several male friends, before she actually gets diagnosed.  Each of these men may, to varying degrees, have a role to play in supporting sufferers.  They may also suffer themselves, as their partner will likely miss work, social opportunities, etc due to this disorder.  Sex lives can be effected by this “womans” problem, dreams of starting a family with the woman you love can become unobtainable, and in the case of IVF or other fertility treatments can become a finacial burden for a couple.  Women represent just over 50% of the human capital of any nation – when we are “disabled” by a medical condition it’s to everyone’s mutual disadvantage. 
          That said, Mark I agree with your position that the article has a number of questionable generalizations, but the fact remains that the underdiagnosis of this (or any) debilitating condition is a tragedy.  Perhaps in this case, getting the information out there and encouraging dialogue is more important than symantics.
           

          • Anonymous

            thanks Monica for furthering the discussion.  I think much human suffering is invisible.   Many men will hang in their with a girlfriend or spouse, but many men walk out. I know that’s a generalization.  It takes courage to companion someone through an illness like this.  I was looking for some compassion, which you demonstrated. Thank you. 

      • Tara

         While I agree with Mark that doctors shouldn’t necessarily be blamed, the fact of the matter is that doctors do need to be better educated about the prevalence of endometriosis.  I went to doctors for 4 years and they attributed my pain to gastrointestinal problems.  Endometriosis was never even considered.  Once I read just a short blurb about endometriosis in a book, however, it was blatantly obvious what was wrong with me.  Do doctors skip this subject in medical school?  Mark, all type of doctors should have enough education to look at a women’s symtoms and at least put endometriosis on the list of possibilities. 

        As a side not, for all you women with endometriosis- giving up gluten (especially wheat) has alleviated my symptoms, and many of my friends’ symptoms, by up to 80%.  There is currently research being done regarding this phenomenon.  There is a possible link between the hormones in wheat and endometriosis, and there is also a link between gluten and inflammation.  And please be aware that hormone treatments do not help many women with endometriosis.  For sound medical and nutritional advice, read “Endometriosis- A Key to Healing Through Nutrition” by Dian Shepperson Mills and Michael Vernon.

        • JayneCW

          Hormone treatments can’t work, it just is a matter of finding the right one. I tried many different types of birth control before I found one that was effective, but the first few did not allieviate pain. I think it’s worth exploring different options in that category, though, because it can really help pain as it suppresses hormones and the growth of the tissue.

      • Anonymous

        “Personally, if I went to the doctor complaining of pain, I wouldn’t be surprised if it too a couple of tries before it was figured out.”
        So I’m guessing you or your loved ones have never suffered pain that doctors couldn’t alleviate. If so, you’d be guilty of doing everything under the sun to stop it too, even expert-shopping.

      • RachelWHNP

        As a women’s health nurse practitioner and a strong advocate for women’s health, I think Mark raises many important points about this questionable blog post. I expect more from an NPR contributor. Endometriosis is under-diagnosed because the only definitive diagnosis is laparoscopic surgery, which is invasive, carries risks, and is rarely done solely to confirm diagnosis. Most people are diagnosed based on history and symptoms alone and treated effectively with hormonal contraception and anti-inflammatory pain medications. This may be part of why it is “under-diagnosed”, since often the treatment with hormonal contraception (the majority of women in this country also desire contraception at some point in their lives) is billed to insurance under a diagnosis code of contraceptive management, with the added benefit of controlling the symptoms of endometriosis. Most women in this country do not have the luxury of doctor-shopping or paying out-of-pocket for a visit to Mayo for a definitive diagnosis.

        • pat

          But several doctors didn’t even mention the *possibility* of endometriosis.

          Finding a good doctor is hard.  There should be better ways to find out how good a diagnostician a a given doctor is.  If we continue to rely on the current word-of-mouth system, people without the right social connections, or the money to try many doctors, will have years of needless suffering.

          Looking back at the article, I see that the pain doctor who suggested endometriosis and led them to Dr. Laufer was not named either.  I’d like to know that doctor’s name as well.

      • debbie

        I have been through hell getting an accurate diagnosis for another condition.  mark, we expect doctor’s to do their job and diagnose correctly, and what can you expect people to do who are not diagnosed correctly but keep looking for answers with other doctors?  Being told, maybe you should take birth control pills but not being told why, for what condition, is not at all helpful.  There is a great deal wrong with out medical system, and while I am sure many doctors genuinely do want to help, they often don’t put the time and energy into cases that are not easily categorized, forcing the patient on a long, expensive, and painful journey.

      • Lori

        First of all “Mark” what gives you the right to comment on “female issues”
        Were YOU diagnosed with endometriosis?  NO!  because you are a male and have never had to go through this.  This is one womens quest for an accurate diagnosis and how her daughter was treated during this time.

        SHAME ON YOU!

  • Samantha

    I am a 43-yr old mother of three who suffered terrible pain between the ages of 15 and 21 BEFORE I underwent a laparoscopy to remove previously undiagnosed endometriosis. Dr. Susan Tredwell (Boston) was the first GYN to accurately identify it! Before meeting this amazingly skilled and caring doctor, I feared I would never have children and lived in unbearable pain.

    I cannot thank her enough. I applaud both of you brave women for sharing your story so that it can educate and inspire others.

    • Anonymous

      I had two laparoscopies and one laparotomy to remove plaques of endometriosis and the only thing that worked was a hysterectomy, salpingectomy and oophorectomy (removal of fallopian tubes and ovaries) I heard later that some women continue to suffer pain from the scar tissue and the endometriosis persists.  There was scarring between my bowels and bladder. I am glad that Samantha went on to have children and had a good outcome.