endometriosis misdiagnosis

Misunderstanding and Misdiagnosis: Journey Towards Endometriosis Diagnosis

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Try this experiment: Google the words ‘endometriosis’ and ‘misunderstood’ and see how many results you get. Care to make an educated guess of how many you would find? 300? 3,000? Try 62,600! For those who don’t have any experience with endo this number might be shocking. But we who have suffered through the long and arduous journey of trying to find a diagnosis, 62,600 is not as staggering as it sounds.

For me, misunderstanding has been a huge part of my life with endo. Although my symptoms began at age fifteen, I was not diagnosed with endo until I was twenty six. Instead, I was misdiagnosed with chronic fatigue syndrome, migraines, bladder infections, urinary tract infections, epiploic appendigitis, kidney stones, pelvic separation syndrome, interstitial cystitis, polycistic ovaries, degenerative disks, a hernia, and the very worst, hypochondria.

Common Misdiagnoses

As I have come to understand over the years, my experience of misunderstanding and misdiagnosis is not one of a kind. In fact, according to the Endometriosis Foundation of America, most women with endometriosis have pain and present symptoms up to a full decade before being diagnosed.  While symptoms have been documented as beginning in girls as early as twelve years of age, the average age of diagnosis is twenty-seven. Additionally, the National Endometriosis Society claims around two million women worldwide have undiagnosed endometriosis.

Like myself, women with endometriosis have been misdiagnosed as having a host of different diseases including interstitial cystitis and polycistic ovaries. Abdominal and bowel endometriosis is often mislabeled as inflammatory bowel syndrome (IBS) while pelvic endometriosis is confused with pelvic inflammatory disease (PID) or pelvic congestion.

Misdiagnosing Endometriosis as a Psychological Disease

Every instance in which a woman is misdiagnosed as having a different medical illness is a potential tragedy, especially because pushing off a diagnosis can place a women in greater danger of losing her fertility.  Being misunderstood and called a hypochondriac, or being told that our symptoms are solely psychologically based is undeniably traumatic. Historically, the idea of blaming the patient for her symptoms has been described by Indian doctors as early as 800 BC. Doctors believed that endometriosis was a psychological issue that could be cured by a positive attitude. According to the Endometriosis Association, 70 percent of women diagnosed with endometriosis were initially told there was no physical cause for their pain, and in 1995 an average of 50 percent of women with pelvic pain were found to have no organic basis for it.

On a personal level, I was told that my physical pain was due to anxiety and depression caused by a past traumatic incident that I had yet to achieve closure on. I was placed on a low dose of tricyclics and instructed to “learn to relax”. The sad part is, both myself and my family accepted this diagnoses as truth and delayed focusing on receiving a genuine diagnosis for many months.

Why is Endometriosis Misdiagnosed?

In a qualitative interview-based study done by Karen Ballard et. al, five main reasons for misdiagnosis or delays in diagnosis were identified.

  1. Unlucky, not ill: Many girls and women who initially experience symptoms assume that they are just unlucky to have painful periods but have no real illness.This assumption leads them to hold back on asking for help or speaking to a doctor for fear that the will just be seen as weak. This incorrect belief is often confirmed by family members who also suffer.
  2. Symptoms normalized: When women finally do gather the strength to ask for help from their doctors, they are often told their symptoms are a normal part of being a women and do not need to be checked out.
  3. Hormones delay diagnosis: Aside from telling women that their symptoms are normal, some doctors prescribe hormones to their patients. This causes an unfortunate situation, as the hormones suppress the symptoms and cause women to believe their symptoms have improved. Women then neglect to get themselves checked out, which causes a delay in diagnosis.
  4. Inadequate diagnostic methods: Recently, it has come to light that the best way to diagnose endometriosis is through laparosopic surgery. Unfortunately, doctors who are uneducated about this are still using other diagnostic methods, such a trasvaginal sonograms. While sonograms can identify endometriomas, they cannot diagnose endometriosis. Utilizing inadequate diagnostic methods can cause a very large delay in diagnosis, or even worse, an incorrect one.
  5. Vague symptoms: Endometriosis manifests in a variety of symptoms. Those symptoms, such as pain, fatigue, bowel and bladder difficulties, and pain during sex are also symptoms of other diseases. Pelvic inflammatory disease, pelvic congestion, irritable bowel syndrome, and interstitial cystitis are a few of the many diseases that have some of the same symptoms as endometriosis. Due to this, endometriosis is often misdiagnosed as one of these other diseases.

How do we prevent misdiagnosis and delayed diagnosis in the future?

  1. Self-education: It is our jobs as strong, independent women to fortify ourselves with knowledge and information about our bodies, minds, and health. The more we know about ourselves, the less likely it is for us to be convinced that we are something that we’re not.
  2. Spread the word: Do you suffer from endometriosis? Have you stocked your brain with all there is to know about it? Let the world know! Share your experiences, knowledge and information with other women who don’t know much about the subject. The more girls and women know about endometriosis, the better their chances of receiving a correct diagnosis.
  3. Inform the medical community: It may come as a surprise to know that not all doctors and nurses are experts at every medical malady. Too often, when it comes to endometriosis, they have a superficial grasp of what it entails. This is due to misinformation coming from the internet, media, and even medical books. We need to take it upon ourselves to inform the medical community what we are really dealing with when we say we have endometriosis.

It’s Up to Us

While endometriosis misdiagnosis and delayed diagnosis are problems that are much more common than they should be, there are ways that we can help ourselves, and others, prevent them from happening. As long as we continue to stand up for ourselves and advocate for the rights of all women and girls with endometriosis, we are on the right track. United together, there is nothing that we endo-sisters cannot overcome in the future.

About the author. Rachel Cohen is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. Rachel is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

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Endometriosis in Teenagers

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The endometriosis patient who elicits from me the greatest form of empathy and compassion is the patient whose pain begins in her teenaged years or even earlier. This young woman has doubts and fears when she thinks her incapacitating symptoms are the norm. She believes that everyone feels as bad as she does during her period (or apart from menses, if her symptoms are not confined to her periods), and so she concludes that other girls handle things better.

She starts to wonder, “Am I a wimp? Do I have to live like this for the rest of my life?”

These feelings of inadequacy are deepened by often well-meaning but uninformed people including coaches (“Working out will make your cramps better”), parents (“Your sisters never complained like you do about this”), and girlfriends (“Don’t be such a baby! It’s just your period!”). Many times the afflicted teenager grits her teeth and tries to tough it out.

When her symptoms do not improve, or when they worsen, the teenager may finally be taken to a doctor, where she may experience her very first pelvic exam. If this examination is not very carefully performed, the experience can be both humiliating and painful. After the exam, the patient may be told, “Everything appears normal.” The message is, “There’s nothing wrong with you. Why do you complain so much?”

If her symptoms are felt to be severe enough, the teenager may be initiated into the world of analgesics (pain medications). Repeated visits to the physician may result in numerous different analgesics.

If symptoms persist, the patient is given ovarian suppressants in the form of birth control pills. The result is that an otherwise healthy and normal young woman is now functioning only with the help of her drugs.

Our society in general frowns on drugs, and teenagers today have especially been inundated with the message, “Just Say No!” This concept contrasts with the young woman’s drug dependency (not drug addiction) and can contribute to a gradual loss of self esteem.

She may think, “I shouldn’t take drugs, but I can’t function without them, therefore I am weak or helpless or worthless or bad.”

As endometriosis progresses in these young women, most eventually end up on the operating table for diagnostic procedures. The endometriosis is diagnosed (sometimes) and staged (sometimes). If the physician believes that there is no cure for this devastating disease, he or she may offer only analgesics or medical forms of therapy (Danocrine, Lupron, Synarel or Zoladex) which stabilize the process at great monetary expense and side effects that can be as bad as the disease itself.

The ultimate result here is that, in addition to all the other physical and psychological impacts of this type of treatment, it takes away the teenager’s hope that she will ever be pain-free to live a normal life. There is nothing I know that has a greater impact on our lives than the loss of hope. It is a primary form of torture used on prisoners of war. Is it any wonder that we find many of these young women have become angry, depressed, and totally confused?

What Can Be Done?

Thankfully, we have much to offer a young woman with endometriosis.

Make the Diagnosis Early

Young women who do not respond to simple mild analgesics and who have any suggestive findings on physical examination should be laparoscoped. Endometriosis should be considered as a possible diagnosis at any point after a girl has her first period (menarche).

Don’t be Drug-happy

If she has symptoms consistent with a diagnosis of endometriosis, it is crucial that the diagnosis be proved before subjecting a young woman to prolonged bouts of powerful drugs. Sometimes physical abnormalities can cause painful symptoms. Such abnormalities can be corrected surgically and are not helped at all by medications.

Believe the Patient

A young woman’s support group (parents, siblings, schoolmates, teachers, partners, boyfriends and girlfriends, etc.) should believe her when she reports pain and other symptoms. It is really very unusual for a well adjusted child to suddenly begin using complaints of pain to get attention.

Enlist an Expert

Facing a first pelvic examination is a little intimidating for even the most relaxed woman. Imagine, then, how frightening it can be for a young woman, in pain and worried. Find a physician who is interested in treating the entire person: not just a collection of pelvic organs.

Know These Facts!

We are now finding that well-trained surgeons skilled in recognizing all visual manifestations of endometriosis can keep recurrence rates under 20% by completely excising all disease. In the overwhelming majority of cases, surgeons knowledgeable in advanced laparoscopic techniques do not need to make large incisions during surgery. Most patients go home the same day they have surgery.

Certainly, menstrual cramps may persist, and some women will have pain around ovulation. Overall, though, I have found the ability to relieve the pain of endometriosis sufferers is one of the most gratifying things I have ever done.

When chronic pain is relieved, you will see the return of a healthy state of mind. These young women can resume their lives as they ought to be. One young woman’s parents wrote, “Thanks for giving us our daughter back.”

We think the teen-aged years are hard enough without endometriosis making them worse, and are pleased to be able to offer the opportunity for significant and long-lasting pain relief.

About the author: Robert B. Albee, MD, FACOG, ACGE is the Founder of the Center for Endometriosis Care, a COEMIG-designated center of excellence in the treatment of the disease.

Lucine Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

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Is it Endometriosis or Something Else?

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Endometriosis is an often misunderstood disorder affecting an estimated 176 million women and adolescents around the world, during what should be the “prime years of their lives” (Hummelshoj).  Commonly characterized by symptoms that may be so severe as to interrupt one’s daily routine, whether with periods or at any time during the month, endometriosis accounts for the leading cause of pelvic pain in women of all ages.

Girls and women who suffer primarily during menses only may think, “Of course everyone’s periods are super painful – that’s how it’s supposed to be, right?”  This is actually incorrect.  Endometriosis is among the most common of diagnoses in adolescents and women with pelvic pain.  Unfortunately, due to widespread lack of awareness and disease education, early symptoms are often dismissed as pelvic inflammatory disease or infection, ovarian cysts, appendicitis, IBS, Interstitial Cystitis, “normal” pain, or worse, an “in your head” diagnosis.  This contributes to a near-decade delay in proper diagnosis and intervention. The good news is, accurate diagnoses are increasing as doctors and patients alike become better at recognizing the signs of endometriosis, particularly in younger women and girls. Early intervention combining timely diagnosis with proper treatment is essential towards preventing symptom progression and development of infertility (Sanfilippo et al.).

Though many women and girls may experience some discomfort during menstruation, “killer cramps” are NOT normal – despite what the media, friends and even well-intentioned loved ones may tell us.  Pain is the body’s way of saying something is wrong.  Symptoms that get in the way of school, work, sports, extracurricular or social life are an indication something is awry, as are persistent symptoms at any time of the month.

So What’s Normal?

  • minor period discomfort that may even require over the counter medication
  • occasional irregular or absent periods, particularly if athletic
  • “functional” ovarian cysts
  • pain during ovulation

What’s Not Normal?

  • severe and incapacitating period pain or pelvic pain at any time of the cycle that interrupts normal routine
  • GI discomfort, often but not necessarily around the time of menstruation
  • bladder pain or discomfort, during your period or apart from menses
  • chronic heavy bleeding and long cycles
  • if active, pain with sexual activity (especially upon penetration)
  • “chocolate” cysts known as “endometriomas”
  • subsequent allergies, food insensitivities or intolerances, chemical sensitivities, fatigue, or autoimmune conditions like thyroid disease may also be present in some women and girls with the disease

Time to See a Doctor

Any ongoing, worsening pain that has no obvious explanation should be evaluated further. “The younger the patient, the more valuable the early evaluation.” (Robert B. Albee, Jr., MD).

Sound Familiar?

  • you have pelvic pain during your period or at any time of the month that causes you to miss school, work or activities
  • you experience chronic stomach upset such as nausea, diarrhea or constipation
  • you have painful urination in absence of infection
  • if sexually active, intercourse or sexual activity are painful
  • you have family members who have been surgically diagnosed with endometriosis

If you’ve answered yes to any of the above, talk to a trusted nurse or doctor about endometriosis.

Endometriosis is NOT…

  • An infection or sexually transmitted disease (“STD”)
  • Contagious or preventable
  • Caused by abortion
  • Caused by backflow periods and thus cured by hysterectomy
  • Untreatable!

You cannot “catch” endometriosis, and it isn’t an infection of any sort.  You can’t “give” it to anyone else, and there is no absolute prevention.  There are treatments that can help, however; and many women and girls live quite well in spite of the disease and are able to control their symptoms long-term through different options. The cornerstone of any effective treatment regimen is quality surgery; most notably, Laparoendoscopic Excision (LAPEX).

Being aware of signs of endometriosis can help get early diagnosis and treatment – critical to effective management.  Pain – menstrual or otherwise – that interrupts one’s life is never normal – being aware of abdominopelvic pain, GI and/or urinary distress, and/or pain with sexual activity are significant indicators of endometriosis.  The most important step a young woman can take is not trivializing her body’s signals. Pain is a sign that something isn’t right.

Societal taboos and a culture of menstrual misinformation may lead women and girls to think their pain is “in their head”, or they may even be told by others that they are “faking it” to get out of work or class – or that crippling period cramps are “totally normal” and “part of being a female”, but these outdated notions simply aren’t true.  If you are experiencing pain or symptoms that get in the way of your life, see your doctor.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE.  The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff.  We continue our efforts as architects of the legacy in gold standard endometriosis care.

Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

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Endometriosis, Medical and Naturopathic Doctors

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During my endometriosis journey of the last 22 years, I have seen more than 40 doctors and specialists, including three naturopaths.  I have come to realize that I have to be an advocate for my own health. If I don’t agree with the doctor’s suggestion or diagnosis, I get a second or third opinion.  Here is my experience with medical and naturopathic physicians.

Early Menstrual Pain and Endometriosis

I began seeing doctors when I was 13 years old. I always went alone to the appointments. I guess I saw too many different doctors for anyone to come with me and support me. They thought I was just a hypochondriac.

For years, test after test showed nothing but mild scoliosis and thoracic outlet syndrome; they told me it was all in my head and that I should accept it and take antidepressants.  I had doctors talk to me like I was an idiot and prescribe medications for conditions I clearly did not have. One doctor told me that he couldn’t be my doctor anymore because I cried too much. Several doctors embarrassed me in front of other patients because they were frustrated that my body was in so much pain and couldn’t figure out why.  Twenty–two years later, I was diagnosed with stage IV endometriosis, proof that the pain was real.

Alternative Care

Frustrated with medical doctors, I went to a naturopath doctor that was hours away. I just wanted to see if she could find something the other doctors could not.  She asked me to lie down on my back and then she walked around me, touched my arms, looked into my eyes. The rest I really can’t remember, it was long ago.  The interesting thing was, without any tests, she said I had an overabundance of yeast and that my stomach was out of place. Then she moved it back into place! I swear it was so strange because for the first time I felt that I could breathe. It no longer felt as if someone was sitting on top of my chest. She told me to do a yeast free diet along with eating raw pumpkin seeds and some other items as well. It was an interesting visit.  Later I found out that my stomach had been out of place.  Scar tissue from the endometriosis pulled it out of place.

In 2009 I went to see a dietician. After a long interview, she said I had hypoglycemia, bone loss, and adrenal fatigue. This again is something that I would remember later on, as I put the pieces of my illness together. Because I was on Lupron, I have osteoporosis in my jaw. It is possible that the Lupron and the suppression of all the estrogens have caused serious bone loss elsewhere in my body.  No one had considered sending me to get a recent bone scan. My last one was 12 years ago, so at my next GP appointment I will be asking for one.

In 2011, I went to another naturopath. She said I had food intolerances to wheat, dairy and spelt and that my body was not absorbing any nutrients, minerals or vitamins. She put me on a load of supplements to get my body going and for a time, it was working.  While on the diet I had more energy, I was more alert and over all I felt great. Then I was put on Amitriptyline for nerve pain from the endometriosis and everything fell apart.  The Amitriptyline made me feel groggy, crave junk food and I didn’t want to do anything. It was almost like the medication was making me depressed. I was on 70mg a night. The one good thing it did was help me sleep, something I have needed for years.

Back to a Medical Doctor

In 2012, I went to one of the best doctors of Canada.  He pulled all of my files from all the doctors I had seen over the years.  His office sent me a copy of everything.  This was the first time I had access to all of my medical records.  At least half the information in my file was wrong.  (Ladies request your medical files!) Much of the information was new – tests that had not been ordered but that were in my file anyway, notes to disregard anything that anyone other than a medical doctor had told me. From these files, I learned that I must take all of my files with me and make notes. Otherwise, there is no guarantee the  information will be accurate. If it hadn’t been for my persistence to research and find one of the best doctors for endometriosis, I wouldn’t be writing this article as we speak.

All in all, the Naturopathic doctors made me feel better and talked to me like a human being, while many of the medical doctors treated me like a piece of garbage, humiliated me and made me feel like I was crazy. I wasn’t crazy. The five hours of surgery to remove and repair the endometriosis damaged organs proved the pain was real.  It had a cause.

Where I Stand Now

After years of suffering with endometriosis and being ignored and humiliated by medical doctors, it is difficult for me to listen to their advice. The errors and comments in my medical files showed a blatant disregard for my health. Many of my doctors thought I was crazy or faking it. I feel that I have wasted most of my life in and out of doctors’ offices. It was only through my persistence that I found the one doctor who was able to diagnose my endometriosis.

For now, I have decided to still take my birth control pills for my endometriosis – they seem to work.  At least, the pills even out my moods. Eventually, I would like to come off of the pill and my other medications. As for everything else, it’s all natural and clean eating for me. I am also learning how to manage stress.  Unless I am dying or I feel it’s 100% needed, I will never see a doctor again.

Have you had a similar experience?  How long did it take to find your endometriosis? Share your story so that other women don’t have to suffer.

Lucine Medical Disclaimer: All material on this website is provided for your information and may not be construed as, nor should it be a substitute for, professional medical advice. The opinions reflected in patient posts reflect those of the writer and not necessarily those of the company.

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My Battle with Endometriosis and Migraines

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Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.

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