MARCH 2024 UPDATE: I am aware that some of the links are still broken due to websites having gone offline over the years. I am working on overhauling this page. Apologies for the slow-going. Thank you for your patience.
The following represents statements made about endometriosis through the years. Many of these are still told to us today, even and especially by our doctors. Read through each one, and note how your brain initially answers the question: Fact or Myth?
You may be surprised.
- Fact or Myth? Getting pregnant cures endometriosis.
- Fact or Myth? Endometriosis can be accurately diagnosed by simply looking at it.
- Fact or Myth? Hysterectomy cures endometriosis.
- Fact or Myth? Period pain is normal.
- Fact or Myth? Endometriosis always leads to infertility.
- Fact or Myth: Endometriosis only affects white “career women” who delay childbearing.
- Fact or Myth? Hormonal treatments treat/cure endometriosis.
- Fact or Myth? Endometriosis can be prevented.
- Fact or Myth? Endometriosis is easy to diagnose since it causes severe monthly pelvic pain.
- Fact or Myth? Endo sufferers often get accused by doctors as being sexually promiscuous / having sexually transmitted diseases (STDs) as a way to explain pelvic pain.
- Fact or Myth? Tampons and sex actually prevents endometriosis.
- Fact or Myth? Teenagers are too young to have endometriosis.
- Fact or Myth? Special diets, herbal supplements or exercise will cure endometriosis.
- Fact or Myth? Endometriosis is only painful during menstruation.
- Fact or Myth? Endometriosis ALWAYS comes back immediately after treatment.
- Fact or Myth? If not treated, endometriosis grows, spreads, and gets worse every month.
- Fact or Myth? “Laser” is the best way to treat endometriosis.
- Fact or Myth? Endometriosis goes away at onset of menopause.
- Fact or Myth? Endometriosis only affects women through their childbearing years.
- Fact or Myth? Negative thinking causes Endometriosis…or Endometriosis is all in your head, it’s not that bad!
- Fact or Myth? Abnormal menstral cycles are to be expected with endometriosis and are not a cause for concern.
- Fact or Myth? Endometriosis only exists in industrialized countries.
- Fact or Myth: People with endometriosis don’t need to be on opiates – Ibuprofen will treat the pain just fine.
- Fact or Myth: There is a higher incidence of birth defects in babies born to those who have Endometriosis.
- Fact or Myth? The more severe the Endometriosis, the more severe the pain.
- Fact or Myth? Endometriosis is cancerous.
- Fact or Myth? Endometriosis is a rare disease.
- Fact or Myth? Surgeons will tell you that Endometriosis can be found in unlikely places such the lungs, just to scare you into getting surgery.
- Fact or Myth? If you are a redhead, you are more likely to have endometriosis.
- Fact or Myth? Endometriosis is caused by a STD.
Fact or Myth? Getting pregnant cures endometriosis
MYTH!
EndoAlert.org writes:
“As much as it hurts to think about it, there is no cure for endometriosis. During pregnancy a woman’s body is greatly deprived of estrogen. This can reduce the symptoms of endometriosis during the time that a woman is pregnant but it does not get rid of it. Doctors or specialists who are unfamiliar with the disease may recommend this as a form of treatment but they may be working from the assumption that you are ready for parenthood. Endometriosis does have an affect on fertility so if childbearing is something your interested in you should discuss this with your doctor so that your treatment can be tailored toward preserving fertility for the time when you are ready to become a parent.”
For more on EndoAlert, check out their news page at:
http://endoalert.org/currentnews.php
The Endometriosis Research Center (ERC) FAQ says,
My doctor told me pregnancy cures Endometriosis, so I’m going to try to get pregnant. Is this a good idea?
“Only you and your partner know whether it’s the right time in your life to become parents. Pregnancy should never be prescribed as a treatment for an illness! Pregnancy can keep symptoms at bay for some women, but it is not a cure.”
For more on the ERC, check out their ‘about us’ page at:
http://www.endocenter.org/about.htm
endometriosis.org says:
WILL PREGNANCY CURE ENDOMETRIOSIS?
“No. Some women find that their pain symptoms are reduced during pregnancy, but this is not the case for everyone. In most cases, endometriosis will return after giving birth and stopping breast feeding.
“Fortunately, the myth that pregnancy cures endometriosis is slowly disappearing. However, it is not disappearing fast enough! The reality is that pregnancy-like hormonal drug treatments usually suppresses the symptoms of endometriosis but does not eradicate the disease itself. Therefore, symptoms usually recur after the birth of the child. Most women can delay the return of symptoms by breastfeeding, but only while the breastfeeding is frequent enough and intense enough to suppress the menstrual cycle.”
For more on endometriosis.org, check out their F.A.Q. at:
http://www.endometriosis.org/faq.html
and their ‘about us’ page at:
http://www.endometriosis.org/organisation.html
Notable endometriosis surgeon Dr. David Redwine (RIP) wrote:
“It has never been shown by any biopsy-controlled study that pregnancy eradicates or cures endometriosis. In fact, there are several studies which have shown a predominance of previously fertile women among patients diagnosed with endometriosis.” (Read more of what he has to say about this at his website!)
The Center for Endometriosis Care (CEC) writes:
“Pregnancy figures in one of the myths surrounding endometriosis. Women have been told, “you can’t get pregnant if you have endometriosis” as well as, “if you get pregnant you will cure endometriosis.” Neither statement is true.
“…Here is what happens: During pregnancy, ovulation stops. The endometriosis implants generally become less active, and may get smaller and less tender. This seems to be the result of the hormonal changes pregnancy brings. These include high levels of progesterone, the presence of HCG (human chorionic gonadatropin) and prolactin, among others. Menstruation stops, and many women with endometriosis feel much better while they are pregnant.
“…However, the disease does not go away during pregnancy. After pregnancy and nursing (and sometimes before then), the symptoms return, sometimes with a vengeance. It is heartbreaking to see a new mother struggle to cope with a debilitating disease at a time that should be joyous (if exhausting).”
For more on The Center for Endometriosis Care (CEC), check out their Q&A page at:
http://centerforendo.com/endoq&a.htm,
and their ‘about us’ page at:
http://centerforendo.com/aboutcec.htm.
Fact or Myth? Endometriosis can be accurately diagnosed by simply looking at it.
Myth!
The Endometriosis Research Center (ERC) writes:
“The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy, where biopsies are taken from suspected sites. It can also be visualized during surgery if the surgeon knows what to look for. Ultrasounds, MRIs, CT Scans and other diagnostic tests are not conclusive. The ERC does not support “medical diagnoses,” such as administering GnRH therapy prior to a surgical diagnosis.”
For more on the ERC, check out their ‘about us’ page at: http://www.endocenter.org/about.htm
The WomensSurgeryGroup.com writes:
“Very recent studies have conclusively shown that the visual diagnosis of endometriosis is accurate only 60% of the time (at best). This is very important. A patient may be diagnosed with “extensive” endometriosis when little or none is actually present. Alternatively, widespread disease might be missed or mistaken for another condition.
“Accurate diagnosis and staging is extremely important for the purpose of subsequent treatment and prognosis.”
For more info on the Women’s Surgery Group, see their ‘about us’ page at http://www.womenssurgerygroup.com/aboutus.asp page.
Fact or Myth? Hysterectomy cures endometriosis
MYTH!
The Endometriosis Research Center (ERC) says:
“Hysterectomy is not a cure and inappropriate for young women!”
Endometriosis.org says:
“Hysterectomy (surgical removal of the uterus) does not guarantee relief from endometriosis-related symptoms and can neither be classified as a treatment, nor as a cure for endometriosis. Furthermore, surgery is surgeon dependent, and if all the endometriosis is not removed as at the same time as the removal of your uterus and/or your ovaries you may still have endometriosis (and associated symptoms) after this irreversible procedure.”
UofM Health says:
“Taking out the ovaries (oophorectomy) and the uterus (hysterectomy) usually relieves pain. But the pain relief doesn’t always last. Pain comes back in up to 15 out of 100 women who have this surgery. This means that in 85 out of 100 women who have surgery, the pain doesn’t come back. If you have your ovaries removed, you can choose to take estrogen therapy. It will protect your bones and prevent menopause symptoms after your ovaries are removed. But it may also make endometriosis come back.”
Fact or Myth? Period pain is normal.
Myth!
endometriosis.org writes:
“Womens’ problems perplexed nineteenth century doctors, who saw them as indicative of womens’ unstable and delicate psychological constitutions. Even though attitudes towards women improved during the twentieth century, some of the old beliefs still linger unconsciously, and affect the medical professionals’ attitudes towards womens’ complaints, including period pain.
“As a result, while seeking help for their pelvic pain (which may occur apart from menses), many women with endometriosis are told that their (often severe) period pain is “normal”, “part of being a woman”, or “in their head”. Others are told that they have “a low pain threshold”, or are “psychologically inadequate”.
“The net is that if pain interferes with daily life (going to school/work, partaking in day-to-day activities) it is not normal.
“If pain interferes with your day-to-day life, please seek help and ask to be investigated to determine the cause of your pain.”
The Endometriosis Association writes: “Menstrual pain that keeps you from participating in usual activities is not normal. Some women never experience menstrual cramps. Others have only mild, occasional pain. If your cramps are severe and/or frequent, it is a sign of a problem.”
EndoCenter.org writes:
“What’s the Big Deal? It’s Just “Killer Cramps,” Right?
“Wrong. This mistaken assumption diminishes and invalidates the suffering of every individual with the disease and can lead to feelings of isolation. Endometriosis isn’t just “bad periods.“
“So What IS Normal?? Minor cramping during menses, often treated with over the counter remedies. Each month, tissue lining the uterus (endometrium) breaks down, sheds and exits the body resulting in normal menstruation. Inflammatory hormones – particularly those known as prostaglandins – are linked to the minor cramping and discomfort of a normal period. This is called dysmenorrhea. Dysmenorrhea is not the same as endometriosis, nor is the disease simply comprised of “normal” endometrium in abnormal places – as many sources and organizations mistakenly assert.
“Symptoms vary, but classic signs [of endometriosis] include severe dysmenorrhea, painful sex, chronic pelvic pain, Middleschmertz (painful ovulation), bowel or bladder associated pain or symptoms, infertility and often chronic fatigue, collapsed lung in thoracic endometriosis, and more. Endometriosis can cause pain in menstruators and non-menstruators alike.”
Fact or Myth? Endometriosis always leads to infertility.
MYTH!
endometriosis.org writes:
“Too many young women are given the impression that having endometriosis invariably means that they will become infertile. The Association periodically has to reassure young women who have been given this impression by their doctors. Teenagers as young as 18 have been told to “go find a husband and have children as soon as possible, because if you don’t, you never will”.
“Unfortunately, there are no reliable statistics that indicate what percentage of women with endometriosis have no problems having children, have difficulties but eventually succeed, or never succeed. Therefore, it is impossible to give women a reliable indication of their chances of having fertility problems. However, in general, it is believed that the likelihood of fertility problems increases with the severity of the disease.
“Many women with endometriosis do go on to have children. Gynaecologists generally believe that 60-70% of women with endometriosis are fertile. Furthermore, they say that about half the women who have difficulties do eventually conceive with or without treatment.”
Another myth endometriosis.org addresses is, “Infertility usually caused by endometriosis on the tubes”. They write, “The statement that scarring of the fallopian tubes due to endometriosis is a common cause of infertility is appearing more and more frequently in lay publications. The authors of such publications are usually people who have very little understanding of the condition.
“I suspect they are confusing the causes of endometriosis-associated infertility with those of pelvic-inflammatory-disease-associated infertility. Pelvic inflammatory disease is an infection that damages or blocks the fallopian tubes. It causes infertility by preventing movement of the egg and sperm through the tube.
“The reality is that endometrial implants are rarely found on the fallopian tubes. Therefore, endometriosis does not usually cause scarring of the fallopian tubes or infertility due to scarring of the tubes.
“The mechanisms by which endometriosis causes infertility are still largely unknown, despite years of research. It may be years or even decades before the riddles of endometriosis infertility and sub-fertility are solved.”
The Endometriosis Research Center (ERC) writes:
“While Endometriosis can cause infertility in approximately 35% of women with the disease, with the right treatment and partnership of the right healthcare professional, pregnancy can certainly be achieved by a woman with the disease. See your healthcare provider if you have concerns, and request a copy of our “Infertility” presentation.”
See also Dr. Redwine’s FAQ on pregnancy, where he shows via documented research that having endometriosis does not automatically mean one is or will be unable to conceive.
http://www.endometriosistreatment.org/html/question8.html
Fact or Myth: Endometriosis only affects white “career women” who delay childbearing.
MYTH!
The Endometriosis Summit writes:
“Structural racism and implicit bias permeates many institutions throughout America, devastating the lives of African Americans. Healthcare, made of the medical institutions that reign under its umbrella, is no exception. The field of gynecology has an especially egregious history of horrific crimes of racial nature. The proclaimed “father of gynecology,” Dr. J. Marion Sims, performed torturous experiments on enslaved Black women without their consent, or anesthesia. The failure for doctors to acknowledge the humanity of African American women, and its appalling impact on patients, can still be seen today.”
EndoBlack writes: “Years of little research have caused medical professionals to believe that only “white women” can be diagnosed with endometriosis. Little research leads to confusion for both medical professionals and patients. Medical research must be expanded to be more inclusive to African American women and women of color.”
EndoFound writes: “Early theories about endometriosis and race suggested that the disease had higher incidence among white, middle-class women and was almost nonexistent among Black women. Unfortunately, the consequences of this myth continue to this day. Today, Black, Indigineous, and POC individuals face more barriers to receiving proper endo diagnosis and treatment.”
Endometriosis.org writes: “Even in 2020, the early endometriosis research that characterised endometriosis patients as affluent, nulliparous women, may contribute to unconscious diagnostic biases and stereotypes. In some countries and social settings, there are known disparities in health care coverage and quality across racial and socioeconomic groups.
Future research should focus on patient experience and should recognise that patients from different racial/ethnic backgrounds may present with different symptoms, may express different treatment preferences, and may respond differently to treatments.”
Fact or Myth? Hormonal treatments treat/cure endometriosis.
MYTH!
endometriosis.org writes:
“Synthetic hormonal drugs like the pill, Provera, Danazol and Zoladex have been used for many years to “treat” endometriosis. However, these hormonal treatments do not have any long-term effect on the disease itself. They do temporarily suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms more often than not return.
This means that hormonal treatments do not have a role in treating (eradicating) endometriosis. If eradication of the disease is desired, surgery performed by a gynaecologist with extensive knowledge and experience of the specialised techniques used for endometriosis is the only effective medical treatment.”
The Center For Endometriosis Care (CEC) writes:
“There is NO evidence that women treated with these agents have their endometriosis cured. On the contrary, there is ample evidence that most women have a prompt return of symptoms after they discontinue the drug. Menopause is a clinical situation which can be quite similar to the state induced by Lupron or Synarel treatment. When you consider that women who still have implants of endometriosis in their pelvis after menopause are very likely to have problems when postmenopausal hormone therapy is begun, it is hard to understand why anyone would reasonably expect a long-term cure from creating a state of extreme hypoestrogenism (lack of estrogen). In truth, if the implants are present, they can respond to stimulation. There has never been a medication that will cure the disease.” [See also Dr. Albee on suppressive medications and Dr. Albee on suppressing endo with birth control pills].
ICER (Institute for Clinical and Economic Review)‘s 2018 report on Elagolix: they “voted unanimously that the evidence was not adequate to distinguish the net health benefit of elagolix from that of treatment with either a GnRH agonist (leuprorelin acetate) or a hormonal contraceptive (depot medroxyprogesterone), due to limited and mixed evidence on clinical effectiveness and potential risks.
“They also noted the uncertainty around the therapy’s long-term side effects and clinical benefit, as elagolix use was limited to 6-12 months in clinical trials yet is intended to treat a chronic and disabling condition.
“While elagolix appears to offer short-term clinical benefits in terms of reduced pain and improved quality of life for women living with endometriosis, evidence is not yet sufficient to rule out the possibility that this therapy may pose long-term safety risks for patients,” noted Dan Ollendorf, PhD, ICER’s Chief Scientific Officer.”
Fact or Myth? Endometriosis can be prevented.
MYTH!
The Endometriosis Research Center (ERC) writes:
“There is no current manner of preventing Endometriosis, and it is not a disease which is “contracted” or “caused” by anything the patient did – nor is it contagious. It is, however, highly suspected to be genetic.”
Steph writes: In January, 2009, I blogged about an article I found which noted that women have been found to be predisposed to endometriosis by birth. This proves that if we are born with the condition, we cannot prevent it. Read the entire study and findings from the New England Journal of Medicine.
Fact or Myth? Endometriosis is easy to diagnose since it causes severe monthly pelvic pain.
MYTH!
NursingCenter.com writes:
“Although severe menstrual pain, pain during intercourse, and low back pain that worsens during menstruation are common symptoms of endometriosis, they can also be caused by other conditions, such as pelvic infections and ovarian cysts. Also, about 30% of patients with endometriosis have no pain.”
See my related discussion entitled, Fact or Myth? Endometriosis can be accurately diagnosed by simply looking at it.
Fact or Myth? Endo sufferers often get accused by doctors as being sexually promiscuous / having sexually transmitted diseases (STDs) as a way to explain pelvic pain.
FACT!!
This question comes up so often that endometriosis.org has a FAQ for it:
Is endometriosis a sexually transmitted disease or infectious?
“No. Endometriosis cannot be transferred from one human being to another. The cause of endometriosis is not yet known, but it is not an infectious disease.”
In Endo What’s Top 10 BS Myths About Endo, they address the STD question:
“This myth is just nonsense and I suspect originates from confusion between endometriosis and endometritis, which is caused by infection of the endometrium by sexually-transmitted or other types of bacteria. However, endometriosis and endometritis are completely different things so please feel free to correct anyone who confuses the two.”
See also Fact or Myth? Endometriosis is caused by a STD.
Fact or Myth? Tampons and sex actually prevents endometriosis.
MYTH!!
The Endometriosis Research Center (ERC) addresses the following question:
I heard tampons and sex can prevent Endo. There was a study done on this by a major institution and it was all over the news, so it must be true.
“False. While it makes for flashy headlines, there is absolutely zero conclusive evidence that tampons or sexual activity will prevent Endometriosis. Read the ERC’s response to this “study”“.
Fact or Myth? Teenagers are too young to have endometriosis.
MYTH!!
Endometriosis.org writes, “Far too many doctors still believe that endometriosis is rare in teenagers and young women.
“Consequently, they do not consider a diagnosis of endometriosis when girls and young women come to them complaining of symptoms like period pain, pelvic pain and painful intercourse.”Consequently, they do not consider a diagnosis of endometriosis when girls and young women come to them complaining of symptoms like period pain, pelvic pain and painful intercourse.
“Unfortunately, this belief is a carry-over from earlier times. Before the introduction of laparoscopy in the 1970s, endometriosis could only be diagnosed during a laparotomy, major surgery involving a 10–15 cm incision into the abdomen. The risks and costs of a laparotomy meant it was usually done only as a last resort in women with the most severe symptoms who were past childbearing age. Because only women in their 30s or 40s were operated on, the disease was only found in women of that age. Subsequently ‘the fact’ arose that endometriosis was a disease of women in their 30s and 40s.
“It was only with the introduction in the 1970s and 80s of laparoscopy to investigate women with infertility problems that gynaecologists began diagnosing the disease in women in their late 20s and early 30s, the age group being investigated. So, they revised the typical age range for endometriosis down to the late 20s and early 30s. Again, they did not consider that they might be ‘finding’ it because they were ‘looking’ for it.
“The realisation that endometriosis could be found in teenagers and young women came about as a result of research by the national endometriosis support groups in the mid 1980s, which caught the attention of some eminent gynaecologists in the 1990s. Dr Marc Laufer of the Children’s Hospital Boston conducted studies of teenagers with chronic pelvic pain. One of his studies showed that adolescents whose chronic pelvic pain was not alleviated by an oral contraceptive pill and a non-steroidal anti-inflammatory drug like Ponstan had a high prevalence of endometriosis—as high as 70% [1].
“Most recently the Global Study of Women’s Health, conducted in 16 centres in ten countries, showed that two thirds of women sought help for their symptoms before the age of 30, many experiencing symptoms from the start of their first period [2].
Teenagers and young women in their early 20s are not too young to have endometriosis – in fact, most women experience symptoms during adolescence, but unfortunately don’t get diagnosed and treated until they are in their 20s or 30s.”
Fact or Myth? Special diets, herbal supplements or exercise will cure endometriosis.
MYTH!
EndoAlert (site no longer exists) wrote:
“Anyone claiming to be able to cure endometriosis with whatever product they are selling should be considered skeptically. It’s improper to say they “cure” the disease as there is no cure. What they are doing, if successful, is relieving the symptoms of endometriosis. It is common sense that a healthy diet and excercise can boost your immune system and make you feel better all around. However, there are many unscrupulous people who are willing to prey on people in pain by selling gimmicks or, worse yet, medication they do not fully understand. Before you try any new diet, excercise, or medication discuss it with your doctor”.
Endometriosis.net writes: “Currently, there is no scientific consensus on the effect of utilizing herbs and supplements for endometriosis and its related symptoms. However, herbs and supplements can impact different individuals in different ways, and some may experience relief from symptoms when using certain herbs or supplements in a healthy and safe manner.”
There are a couple of well-known endometriosis organisations out there strongly selling their viewpoint that people should be on certain types of diets and supplements, and that such diets and supplements can prevent endometriosis. My opinion of these doctors and organisations is not high as a result, since endometriosis cannot be prevented – we are born with it.
Fact or Myth? Endometriosis is only painful during menstruation.
MYTH!
EndoAlert writes:
“In the early stages of endometriosis, sufferers may notice some difference in the pain depending on their cycles because the tissue swells and sloughs off, but as the implants and adhesions grow this can quickly turn in to constant pain of varying degrees. Many women who suffer from endometriosis experience debilitating levels of pain that prevent even the most normal of activities such as sitting up or walking. At times, sadly, the pain can be so severe that even prescription narcotics cannot help.”
Fact or Myth? Endometriosis ALWAYS comes back immediately after treatment.
This one is a bit tricky.
Women’s Surgery Group writes:
“Medical therapy (birth control pills, progesterone, lupron, etc.) all treat the sypmtoms of endometriosis, but none have been shown to eliminate endometrial implants. Some implants become smaller, less visible, and less hormonally active with medical therapy, but they do not disappear. Once medical therapy is stopped, symptoms usually reappear.
“Surgical therapy is done by laparoscopy in the vast majority of cases. Unfortunately, patients often undergo repeated laparoscopies (sometimes as often as every 6 months). They are told their endometriosis keeps “coming back”. If endometriosis implants are removed (excised) during laparoscopy, those implants are gone and will not recur anytime soon. If endometriosis is diagnosed 6 months after surgery, it was not seen during the first procedure, not removed then, or was never there in the first place. When endometriosis is adequately treated during laparoscopy, it will not “come back” within a few months.”
Dr. David Redwine, a notable endometriosis specialist and surgeon, writes:
“The facts about conservative surgical intervention dispute the theory that endometriosis “comes back” in all patients. One of the highest reliable reported recurrence rates after conservative surgery is only 27%. Most studies report half that rate. If the disease is thought to return over time, that rate should be closer to 100%.”
Fact or Myth? If not treated, endometriosis grows, spreads, and gets worse every month.
This is a tricky one. The answer is not necessarily.
Women’s Surgery Group writes:
“The signs, symptoms, and natural course of endometriosis varies tremendously from patient to patient. Currently, one cannot predict whether endo will progress, remain unchanged, cause fertility problems or pain, or require any surgery, much less hysterectomy. Once endometriosis has been diagnosed, many factors must be taken into account to determine the best course of action for each individual patient.”
Dr. David Redwine, a notable endometriosis specialist and surgeon writes:
“Although it seems straightforward enough, until recently no one had conducted an actual study to find out whether endometriosis does or does not spread throughout the pelvis with advancing age (it doesn’t). It was just assumed that it did. This is another example of therapy being guided by opinions rather than facts. Experimental endometriosis in animals has also been shown not to spread geographically, and a 1991 pelvic mapping study from Belgium found that the peritoneal surface area involved by endometriosis does not increase as older age groups of patients are examined. The notion that endometriosis spreads throughout the pelvis like dandelions in a field is wrong and has contributed to irrational medical care for women with endometriosis.”
MainLineFertility.com writes:
“Endometriosis usually begins as flat patches on the ovaries or ligaments of the pelvis. These patched of mild endometriosis may spontaneously disappear over a period of months or they may remain unchanged. At other times, the endometriosis may progress.”
Fact or Myth? “Laser” is the best way to treat endometriosis.
This one is a bit tricky. The answer is “not always”.
Women’s Surgery Group writes:
“It is absolutely critical for the gynecologist to recognize what is and is not endometriosis during laparoscopic surgery. Endo can present as red, clear, white, scarred, black, or any combination of these lesions. Conversely, what looks like endometriosis may be something else. It is necessary for specimens to be obtained for absolute confirmation.
“Some implants are very superficial, others may penetrate one to two inches beneath the surface. Very superficial implants can be successfully destroyed by any number of methods. Deeper implants must be excised to assure that the entire nodule of endometriosis has been removed. Burning the surface of these deep implants with a laser or electrosurgery accomplishes little, leaving the majority of the endometriosis behind.
“The laser is nothing more than a cutting tool, albeit a very accurate one. If the gynecologist is sufficiently skilled and experienced, endometrial implants (both superficial and deep) can be completely removed with lasers, scissors, electrosurgery, or the harmonic scalpel. All work equally well in experienced hands. None have any advantage over the others from the standpoint of postoperative adhesion formation.”
The Center For Endometriosis Care (CEC) writes:
“The surgical approach to endometriosis can be split into four levels: diagnostic, very conservative, aggressive conservative, and radical.
“Diagnostic surgery has diagnosis as its highest priority. That is, the whole point of the operation is to diagnose what’s going on with the patient. No attempt is necessarily made to treat any disease that may be found. We see many patients who believe their prior surgery was a failure when in fact, the surgeon’s desire was to diagnose without treatment. Therefore, the woman may be given a name for her problem (endometriosis) although when her surgery is over she has as much disease as she did beforehand.
“Very conservative surgery is one in which a surgeon might treat very large, obvious, or easily treatable disease. For example, a leaking endometrioma might be drained, or an area of powder-burn implants ablated. Other areas of disease may, by design, be left untreated. Laser ablation, cauterization, and fulguration treat lesions on the surface of the pelvic organs. These techniques are generally discontinued when the visible superficial portion of the endometriosis is no longer recognizable. Unfortunately, this means deeper disease can be left behind to cause more problems. Physicians who believe that endometriosis can never be controlled and will always come back often do this type of surgery.
“Aggressive conservative surgery removes all disease while preserving all organs. The emphasis is on removing all areas of endometriosis and possible endometriosis, while maintaining fertility. Although many surgeons attempt to treat endometriosis using ablative technique, in my opinion this is much less effective than excision.
“Aggressive conservative surgery is performed here at the Center for Endometriosis Care. It is important to remove the disease from the organs, not the organs from the woman.
“Radical surgery describes the removal of the reproductive organs (i.e. uterus, tubes, ovaries). Certainly there are some women who have benefited from this approach, but in my experience the majority of women can attain profound and long-lasting pain relief without resorting to such drastic measures. In addition, there are a host of reports of endometriosis persisting after hysterectomy. Removing a woman’s uterus but leaving implants of endometriosis behind often does not relieve her pain.”
Dr. David Redwine, a notable endometriosis specialist and surgeon, writes:
“Because there is no objective way of knowing how deeply an endometrial lesion might invade by simply looking at it, the laser surgeon may vaporize the surface of a lesion and still leave active disease below. This is particularly true for deeply invasive nodules of the uterosacral ligaments. In addition, the laser surgeon is frequently reluctant to vaporize disease located over the bowel, bladder, ureters, or major vessels for fear of damaging these organs. Again, active disease can remain in the pelvis and continue to cause pain.
“Because laser vaporization completely destroys tissue suspected of being endometriosis, there is no way to confirm through a pathology report that the vaporized tissue was in fact endometriosis, not some other type of abnormal tissue. This can lead to problems in the scientific study of the disease, since the “evidence” presented in a medical journal becomes a matter of opinion rather than a matter of fact.
“No long term studies have been published giving data on pain and recurrent disease after laser vaporization. Studies published to date reflect pregnancy outcome, which is misleading when one is treating pain.
“A surgeon has only two senses that can be used at the operating table: sight and touch. Laser vaporization sacrifices touch entirely and obscures visual cues with carbon residue and smoke. Laser vaporization can leave carbon deposits which can be mistaken later for recurrent disease.
“A laser is an expensive machine and therefore factors into higher healthcare costs. Simpler surgical methods, such as sharp excision, have proven highly effective in eradication of disease and are considerably less expensive. Widely used in the laparotomy era, excision has a long track record of effectiveness in eradicating the disease.
“Use of the laser for endometriosis surgery has not been proven superior to conventional surgery with scissors and blunt dissection, nor has it been proven for any other gynecologic surgery. In fact, one study noted that surgical scissors cause less tissue reaction than carbon dioxide laser when used for cutting.”
Fact or Myth? Endometriosis goes away at onset of menopause.
Myth!
Dr. David Redwine, a notable endometriosis specialist and surgeon, writes:
“There has never been a biopsy-controlled study showing that menopause eradicates, destroys or cures endometriosis. Nor has there has ever been a biopsy-controlled study showing that removal of the ovaries eradicates, destroys or cures endometriosis. One of the oldest patients with endometriosis, age 78, was reported by Haydon.
“The oldest patient with biopsy-proven endometriosis treated at the St. Charles Endometriosis Treatment Program was 74. So strong is the notion that removal of the ovaries will destroy endometriosis, that this elderly patient had her uterus, tubes and ovaries removed at the age of 73 in order to “cure” her endometriosis, even though she was not on estrogen and had received radiation therapy in the 1940s to destroy her ovaries.
“Where did the notion arise that menopause (and, by inference, removal of the ovaries) could destroy endometriosis? Since he had not seen endometriosis after the menopause, Sampson had “hope” that cessation of ovarian function would “usually, possibly always” “probably” cause atrophy of endometriosis.”
Read more about what Dr. Redwine has to say on the subject!
See also Harvard Study Examines Endometriosis Cases After Menopause
See also Fact or Myth? Endometriosis only affects women through their childbearing years.
Fact or Myth? Endometriosis only affects women through their childbearing years.
Myth!
Endo Alert writes:
“Most women begin to show symptoms of endometriosis in their teens. Unfortunately, with the average time to a diagnoses being around nine years these women may suffer for quite a long time before beginning treatment making the average age of women diagnosed with the disease much higher. The affects of endometriosis are also not guaranteed to go away with the onset of menopause. A woman can be neither to young nor to old to have endometriosis.”
See also Fact or Myth? Endometriosis goes away at onset of menopause.
Fact or Myth? Negative thinking causes Endometriosis… or Endometriosis is all in your head, it’s not that bad!
MYTH!!!
Dr. Joseph W. Krotec and RN Sharon Perkins write in Endometriosis for Dummies:
“Even doctors used to believe that endometriosis was a psychological disease. The prevailing attitude was that, if you just stopped thinking about yourself all the time, all the pain would disappear. Some doctors actually believed that a woman’s positive attitude would make the pain go away. Unfortunately, some professionals still use this rationale today.
“Although a positive attitude is certainly good to have throughout your life, you probably know that attitude doesn’t decrease your endometriosis one bit. Endometriosis isn’t just in your head (although it can be; endometriosis has been found in the brain! See Chapter 6 for more info) — it’s in your pelvis, and it hurts.”
See also Fact or Myth? Period pain is normal.
Fact or Myth? Abnormal menstrual cycles are to be expected with endometriosis and are not a cause for concern.
MYTH!
Endo Alert writes:
“Atypical menstration can be a sign of serious health problems. Any unexpected or prolonged bleeding should be treated by a medical professional as soon as possible. Hormonal imblance is a big factor in the growth and spread of endometriosis and should never be overlooked.”
Fact or Myth? Endometriosis only exists in industrialized countries.
Myth!
Dr. Joseph W. Krotec and RN Sharon Perkins write in Endometriosis for Dummies:
“This statement is a variation of the career woman myth. In the past, experts believed endometriosis was a disease only in industrialized countries where exposure to toxic chemicals was rampant. But researchers haven’t proven this theory. Woman in third-world countries have endometriosis, but without the resources to obtain treatment, they’re less likely to be diagnosed. These women also tend to have children at a younger age, which helps to keep symptoms at bay longer”. – page 319
“According to a recent World Congress on endometriosis, the disease hasn’t increased over the last 30 years. However, doctors are diagnosing it earlier and more effectively, probably because more medical personnel are looking for the disease. Also, because of smaller instruments, better optics, and vast improvements in anesthesia (even local anesthesia), more gynecologists feel comfortable using surgery to diagnose the disease.
“Even in third-world countries, where basic surgery tools aren’t available and surgery is a major risk, many doctors are treating women for endometriosis and could treat more of them if the resources were available.
“Endometriosis is clearly a worldwide disease, and the estimated number of women suffering from it is at least 15 million. Nevertheless, endometriosis is still more likely to be diagnosed in industrialized countries for reasons that reflect varying social systems. For example:
- Cultural norms in some countries discourage women from complaining about pain, especially pain related to the reproductive system.
- Women in industrialized countries put off childbirth longer and have fewer children.
- Women in poorer countries and third-world countries tend to have children earlier and more often.
- Women in poorer countries don’t live as long — they may even die before puberty.
- Techniques for diagnosing endometriosis aren’t easily available or may be dangerous.
- The attitude may exist that, if treatment isn’t available, why bother to diagnose it?
- Medical knowledge of the disease may be lacking in some areas.
- Women in industrialized countries are more likely to be exposed to toxins and hormones.
“Even with the greater likelihood for it to be diagnosed in industrialized countries, endometriosis is everywhere. Medical journals of Europe, Japan, and Australia all have numerous articles on the topic. So the disease is present, but the real challenges are looking for it and diagnosing it”. – page 16
Fact or Myth: People with endometriosis don’t need to be on opiates – Ibuprofen will treat the pain just fine.
Myth!
ScienceAlert writes: “when a person has been exposed to very intense episodes of uncontrollable pain for years on end, it might lead to changes within the nervous system itself, and we need to be able to treat that, too.
Catherine Allaire, the medical director and co-founder of the British Columbia clinic, refers to this as ‘upregulating’ – in very basic terms, that means the pain has migrated beyond the endometrial lesions to the brain or spinal cord, causing permanent biochemical changes.
Once, doctors used to think if there was pain, there must be a problem nearby. As it turns out, however, pain is not always a stable or accurate measure of tissue health; rather, it may act as a protective mechanism, and just like a growling guard dog, it can sometimes get triggered by non-threatening disturbances.
If this protective mechanism remains on high alert for too long, even when the threat is gone, it could cause more harm than good. Perhaps that’s why some endo patients experience excruciating symptoms with just a few lesions, while others with severe endometriosis suffer little or no pain.”
In Endometriosis, Mary Lou Ballweg and the Endometriosis Association writes:
“Many people, including physicians, confuse addiction and physical dependence. A person who is correctly using prescription medication for pain over a long period of time may develop some physical dependence — in other words, the body has gotten used to that substance. He or she may need to reduce the amount of medication usd gradually, under the supervision of a physician, when the medication is no longer needed because some physical dependence has developed. This is not the same thing as being addicted to the drug. Addiction includes misusing or abusing the substance in order to get a “high”; not including proper use of the drug.
“Women with endo are often told that their pain is exaggerated, imagined, or normal. Association research showed that 69 percent of women were told so by their ob-gyn! The opinions of family and friends add to that pressure, and women with endo are likely to begin to doubt their bodies and believe their pain is imaginary, somehow their own fault, or that they should just buck up and shut up — even though the pain is often disabling. Many women surveyed often responded that they themselves had sometimes wondered if their pain was “all in their head.” -pages 15,16.
Fact or Myth: There is a higher incidence of birth defects in babies born to those who have Endometriosis.
Myth!
MainLineFertility.com writes:
“About 15 percent of all pregnancies end in miscarriage. In cases of untreated extensive endometriosis, the rate of miscarriage may be increased. For women whose endometriosis has been treated, the miscarriage rate seems to be the same as for women without endometriosis. There is no evidence linking the presence of endometriosis to birth defects. Care may be necessary, however, to avoid conception while a woman is receiving hormonal treatment for endometriosis. These hormone preparations could affect a developing fetus adversely.”
Fact or Myth? The more severe the Endometriosis, the more severe the pain.
The answer is, “not always.”
It depends on where the Endometriosis is found and how each woman reacts to the pain. My friend had less Endometriosis than me but was bedridden and on disability for a year until her surgery, whereas I am high functioning at stage III until menses, then I’m bedridden for up to four days.
MainLineFertility.com writes:
“Not every woman who experiences painful periods has endometriosis. Moreover, some patients with endometriosis have no pain with their periods. It is a puzzling feature of endometriosis that the pain it causes is not always in proportion to the amount of endometriosis tissue present in the pelvis.”
MedScape.com writes:
“The relationship between pain and the stage and site of endometriosis is controversial. Subjects with advanced disease may have little discomfort, whereas women with minimal or mild endometriosis may present with incapacitating pain.
“Some reports show a correlation between the severity of dysmenorrhea and the stage of endometriosis.[48,49] Yet, observations to the contrary, revealing no association between the stage of endometriosis and the severity of dysmenorrhea as well as nonmenstrual pelvic pain, have also been published.[44,47,50]
“Perper et al[51] observed that the intensity of dysmenorrhea was related to the number of endometrial implants but not to the stage of the disease. However, this finding was contradicted by Muzii et al,[49] who reported a lack of correlation between pain severity and the number as well as the type (typical “black” and atypical “fresh/clear”) of endometriotic lesions.
“Evidence regarding the association between the intensity of pain and morphologic features of the endometriotic implants is inconclusive and contradictory.[44,49,52-54]
“Some data indicate that endometriosis-associated pain persists throughout the reproductive years and that endometriosis stage is directly related to the persistence of pain.[55] Furthermore, deeply infiltrating endometriosis is strongly correlated with pelvic pain and the degree of pain is related to the depth and the volume of infiltration.[47,56,57]
“In a multicenter cross-sectional observational study of 469 women with surgically diagnosed endometriosis and pain symptoms (>6 months), rectovaginal septum endometriosis was associated with more frequent dyspareunia; however, the statistical significance of this finding was borderline.[44] The same study found no significant correlation between stage and site of endometriosis and severity of dysmenorrhea, nonmenstrual pain, and dyspareunia.”
Fact or Myth? Endometriosis is cancerous.
So far, a myth.
At this time, it does not appear that Endometriosis is cancerous. Women’s Health U.K. puts it very well:
“Endometriosis is often compared to cancers that affect the female reproductive system, such as ovarian cancer and uterine cancer. This is because both endometriosis and reproductive cancers are characterized by cell invasion and abnormal cell growths. However, endometriosis is not cancer, and the growths associated with endometriosis are benign.
“Endometriosis is characterized by the growth of normal tissue that is usually found in the lining of the uterus, known as endometrial tissue, on the outside of the uterus or on nearby reproductive organs. Endometriosis is a medical condition that features symptoms that may be similar to those of cervical, ovarian, and uterine cancer symptoms, and for this reason the conditions are often linked. Endometriosis does not lead to cancer; however, some medical research suggests that endometriosis may slightly increase the risks of cancer in women.”
A research study out of Huddinge University Hospital in Stockholm, Sweden found that women with Endometriosis are more at risk for developing certain types of cancers than women who do not have Endometriosis. It is important to note that whether or not one has endometriosis, there is a general risk throughout life of developing a cancer. The types of cancers that women with endometriosis are more likely to develop over other cancers are:
- Ovarian cancer – roughly 50% increase
- Endocrine cancer – about 30% increase
- Non-Hodgkin’s lymphoma – about 25% increase
- Brain tumour – approximately 20% increase
*** Note that in this study, the risk of cervical cancer fell by roughly 30%
Women’s Health U.K. goes on to say:
“the increase in risk is small, and is especially so when considering some of the low risks of developing certain types of ovarian and uterine cancers in the population as a whole.
“Breast cancer, thyroid cancer, and non-Hodgkin’s lymphoma are associated with non-ovarian endometriosis, while a slight increase in the risk of developing ovarian cancer is associated with ovarian endometriosis. Women who have undergone a hysterectomy as part of endometriosis treatment were not found to be at the same increased risk of developing cancer.
“It is important to keep in mind that the connection between endometriosis and cancer is not well understood, and requires further medical research.”
Fact or Myth? Endometriosis is a rare disease.
Myth!
“Endometriosis is one of the most common gynecological diseases, affecting more than 5.5 million women in North America alone.” – The National Institute of Child Health and Human Development (NICHD).
“It is estimated that between 2 percent and 10 percent of American women – or 5.5 million women and girls – of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility.” – Ohio State University Medical Center.
“…endometriosis is a complex hormonal and immune chronic disease causing multiple symptoms, including pain, which disrupt the lives of an estimated 89 million women and girls worldwide.” – The Endometriosis Association.
“Endometriosis is an often painful disease affecting an estimated 176 million individuals around the world.” – The Endometriosis Research Center (ERC).
This begs the question, if endometriosis is so prevalent, then why is it still so hidden and misunderstood?
This is why I began focusing on the myths of endometriosis. I started this campaign for Endometriosis Awareness Month back in March, 2009 – and even twelve years later, this illness is still so very misunderstood, and too taboo to talk about! Why? Because it deals with people’s reproductive parts. This has GOT to change if we are to get humane care and promise for a cure.
Fact or Myth? Surgeons will tell you that Endometriosis can be found in unlikely places such the lungs, just to scare you into getting surgery.
Myth!
Endometriosis HAS actually been found in the lungs! It is still considered uncommon, but there is research dating to the 1960s to prove that endometriosis does in fact occur in the lungs.
Dr. Joseph W. Krotec and RN Sharon Perkins write in Endometriosis for Dummies:
“Diagnosing endometriosis in the lungs, or thoracic endometriosis, requires an inquiring mind. Even if you know you have endometriosis elsewhere, you may think that relating it to your lung problems is too far fetched. Thoracic endometriosis can cause many different symptoms, all seemingly unrelated to your pelvis. But suspecting thoracic endometriosis is the first step to diagnosing it, and you may be more likely to make the connection than your doctor, especially after reading this book.” (Read more on pages 110-112).
See also the Ask Dr. Cook Archives, from notable endometriosis specialist and surgeon Dr. Andrew Cook, whereby he addresses the endo in the lungs question.
Fact or Myth? If you are a redhead, you are more likely to have endometriosis.
This one is tricky…. the answer is both ‘fact and myth’, but do read on…
witchiepo on DailyStrength.org, a redhead, says she was told “if you are a red head and have freckles you will have endo”.
Back in 1995, there was a study to determine whether infertile red-headed women have an increased predisposition towards endometriosis. They studied 143 women having laparoscopy and laparotomy for infertility. Of the 143 women who had the surgery, 12 had natural red hair, and 10 of those 12 women were found to have endometriosis. That’s 83% of the redheaded population in that study.
In contrast, only 55 out of 131 non redheaded women (42%) were found to have endometriosis. So, in that study in 1995, it was concluded that “The results suggest an association between the occurrence of natural red hair and those factors that lead to the development of endometriosis.”
One year later, another study came out, to reopen that case and study it again. In this much larger study, 90,065 women, “who had never been diagnosed with endometriosis, infertility, or cancer” made up the baseline and were followed for the next ten years. The study was published in 2006, showing that in those ten years, “1,130 cases of laparoscopically confirmed endometriosis were reported among women with no past infertility.”
According to endometriosis.org, who reported on the study:
“Red hair colour was not tied to endometriosis in the overall analysis, which accounted for a variety of factors, such as parity (the number of times a woman has given birth) and body mass index. However, there was a suggestion that red hair colour slightly increased the risk of endometriosis among women who had never been infertile, but decreased the risk among those who were infertile.
“Further investigation into the potential linkage between red hair colour and coagulation or immune dysfunction may explain the observed difference in the association between hair colour and endometriosis with concurrent infertility vs. endometriosis without infertility,” the authors conclude.”
Fact or Myth? Endometriosis is caused by a STD.
MYTH!!
“I have been asked that, and I know that a few other people on here bave been asked the same thing”. – Samantha on an endo forum on facebook.
I too have been told by a gynecologist that I must have a STD, because he was sure I didn’t have endometriosis. This, after a referral from another doctor. All he did was give me a pelvic exam, and state definitively he did not believe I have endo. He even suggested I may have recurrent bladder infections, but not endo.
Dr. David Redwine, a notable endometriosis specialist and surgeon, writes:
“In medical school, many doctors are taught that sexually transmitted diseases (STD’s) are rampant because of sexually promiscuous women. This is clearly a simplistic and sexist viewpoint, but it is commonly encountered during the initial evaluation of pelvic pain. Even when a teenager may give a history of being a virgin, she may be subjected to testing for and antibiotic treatment of presumed STD’s. Sometimes the patient may be admitted to the hospital for intravenous antibiotic therapy.
“Since the severe pain usually lets up after some time, the conclusions are made that the patient is responding to medication and that she really did have an STD despite negative cultures. Some patients undergo repeated rounds of antibiotic treatment before STD’s are discarded as the cause of the pain.
“Frequently birth control pills are prescribed. Although these may be very helpful in controlling symptoms for some patients, there is no medicine that eradicates endometriosis.”
