A new endometriosis support group has sprung up in the Greater Boston, Massachusetts area. Please check them out at greaterboston_endo · MA!
This support group was formed under the Endometriosis Association’s blessing.

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.

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.

MYTH!

endometriosis.org writes:
“Synthetic hormonal drugs like the pill, Provera, Danazol and Zoladex have been used for many years to ‘treat’ endometriosis. However, recently, it has become increasingly apparent that these hormonal treatments do not have any long-term effect on the disease itself. They do suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms 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.

“It also means that hormonal treatments should not be used to improve women’s chances of conceiving. Not only do they have no effect on the disease itself, but they also reduce the time available to conceive, because conception is not possible while on the drugs. If treatment is needed, surgery by a specialist gynaecologist is imperative”.

EndoAlert.org writes:
“It is now in debate whether hormonal suppression therapies like Depo Lupron provide any benefit past the duration of the treatment. The rate of growth is different for every woman and has too many factors to be covered by such a blanket statement. Some women do see long-term relief from treatment but everyone responds differently and therefore it cannot be assumed as a matter of fact that endometriosis cannot grow or spread due to the adminstration of a treatment. Denying the return of endometriosis is counter productive to treatment and can damage doctor/patient relationships”.

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.”

The Center For Endometriosis Care (CEC) writes:

“[Medical Suppression] can bring about an improvement in symptoms for many women. It clearly does not make the disease go away. Drugs can be used to affect the amount of estrogen stimulation the endometriosis implants receive. Theoretically, the less stimulation the tissue receives, the less cell activity occurs in the implants. This, in turn, slows the rate of progression and the amount of local injury. The price you pay is in side effects from the medicine, the cost of the drugs, and the fact that the endometriosis is still there.”

MYTH!

The Endometriosis Research Center (ERC) addresses the following in their FAQ:
“I have heard Endometriosis only affects white, “career women” who delay childbearing. Is this true?
“No. Endometriosis knows no racial or socioeconomic boundaries. Women of all ages, including teens and post-menopausal women, can suffer from Endometriosis. There have even been a few men who were diagnosed with the disease!”

EndoAlert.org writes, “The occurrence of endometriosis bears no relation to when or whether a woman chooses to become a mother. Many women are diagnosed after they have already had children or when they are trying to conceive. Pregnancy should not be considered a preventative measure for endometriosis. Likewise, any notion that it is a disease suffered by women who have ignored their womanhood for career life or a lifestyle that does not include children is unsubstantiated and likely the creation of a mindset from an earlier generation.”

See also Fact or Myth? Endometriosis only exists in industrialized countries.

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

Myth!

endometriosis.org writes:
“‘Women’s problems’ perplexed nineteenth century doctors, who saw them as indicative of women’s 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 profession’s attitudes towards women’s complaints, including period pain.

As a result, while seeking help for their period pain, many women with endometriosis are told that their (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’.

Many women and girls do experience pain at the time of their period. However, severe pain that interferes with daily life is not normal, and is often due to the presence of an underlying condition, such as endometriosis. Any girl or woman with severe period pain should be investigated to determine the cause of her pain.”

EndoAlert.org writes:
“Pain is not something that should be ignored. Pain is our body’s way of letting us know that something is wrong. Not every woman who menstrates has pain, nor does every woman with endometriosis share the same level of pain or mobility. Pain affects every aspect of life and is one of the biggest factors for endometriosis sufferers when determining their quality of life. There is still a stigma surrounding so-called “female problems” that makes most people unwilling to discuss them or acknowledge the pain of those who suffer with them. This taboo does not make the pain any less real or severe.”

See also Fact or Myth? Endometriosis is all in your head, it’s not that bad…

MYTH!

The Endometriosis Research Center (ERC) FAQ says:
I had a hysterectomy, so I am cured. Right?
“Wrong. Hysterectomy treats Endometriosis ONLY on the organs that were removed. Endometriosis implants also have no need for external sources of estrogen, so regardless of whether you are on HRT or not, if all disease was not removed, you may likely continue to experience symptoms. Request the ERC’s “Aromatase” and “Hysterectomy” Fact Sheets for more information on this topic.”

EndoAlert.org writes:
“Endometriosis grows outside the uterus. This means that removing reproductive organs will not remove the endometriosis. It can be an affective treatment for reducing many of the more painful symptoms of endometriosis such as painful or heavy menstruation but it is not a guaranteed way to get rid of the endometriosis. The most popular theory today puts forth that endometriosis occurs from a backup of menstrual fluid during a heavy period but many women experience retrograde menstruation and do not have endometriosis. Therefore, there’s no medical proof at this time that a hysterectomy can do more than relieve symptoms. In turn, there are many side effects of a hysterectomy and early menopause that should be considered before radical surgery”.

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.”
Read more about what Dr. Redwine has to say on the subject!

Dr. Andrew Cook, a notable endometriosis specialist and surgeon, writes:

“There is no question that endometriosis can be present in a woman who has undergone a hysterectomy and the removal of both ovaries (it’s even more likely if the ovaries remain). Performing a hysterectomy does not in itself treat endometriosis. It may reduce the chance of the future recurrence of endometriosis, and it may reduce non-endometriosis-related cramps, bleeding etc. But the key point is that endometriosis, for the most part, does not grow on the uterus: It grows behind the uterus, on the bowel, in the rectovaginal septum, in the pararectal spaces, under the ovaries, around the ureters, on the bladder, etc.”
Read more about what Dr. Cook has to say on the subject!

The WomensSurgeryGroup.com writes:
“Hysterectomy absolutely, positively will stop a woman from menstruating. Obviously, this also stops menstrual cramps. Removing the uterus, however, has no effect whatsoever on endometriosis. If the endometrial implants are responsible for symptoms (pain with intercourse, diarrhea, painful bowel movements, painful or frequent urination) and they are not removed along with the uterus, the symptoms will not change. Similarily, removing the ovaries and leaving endometrial implants behind is not likely to do anything but throw the patient into menopause, possibly creating a whole new set of problems.

“When a hysterectomy is performed for endometriosis, removing the endometrial implants along with the uterus give the patient the best possible chance for relieving her symptoms. We always try to preserve the ovaries if possible, particularly in the younger patients.

“Hysterectomy with or without removal of the ovaries does not, repeat does not, cure endometriosis.”

ENDOMETRIOSIS: SURVEY SHOWS TEENS AND YOUNG WOMEN TOLD TO ‘GRIN AND BEAR IT ‘
By Lorraine Connolly, Community Newswire
HEALTH Endometriosis, 02 Mar 2009 – 12:52

Endometriosis UK today revealed the results of a survey showing the impact of endometriosis on the lives of teenagers and young women.

Caroline Overton, trustee of Endometriosis UK and consultant obstetrician and gynaecologist at St. Michael’s Hospital Bristol, said “This survey reinforces the view that endometriosis is problematic in this age group. Some doctors may not recognise it, others may be unwilling to diagnose it because of the limited treatment options, particularly for this age group.”

Key findings from the survey of more than 1000 teenagers and young women, include 72% of respondents saying they had had time off school/study/work for their periods, while a third (33%) had seen their doctors more than five times for period pain. And more three out of five (59%) described their pain as severe or very severe.

Of the women surveyed, 57% had been prescribed the pill, while 51% had been given painkillers but both of these were ineffective for most respondents (61%).

Of those who had gone back to the doctor after neither route worked, a number of respondents said they were then either referred to a gynaecologist or given a laparoscopy (one of the only ways to positively diagnose endometriosis). A typical response from those surveyed was: “After many many years persuading them there was something wrong, I finally got referred for a laparoscopy and was diagnosed with endometriosis. They advised Prostap (a medication),”. One woman who was told she was “too young to have endometriosis” was diagnosed with the condition six months later.

Endometriosis UK said a “significant minority” of respondents said they had been told that the pain they were experiencing was normal, to try a hot water bottle, to live with it or think about getting pregnant. Typical comments included: “I was told by my doctor that my periods would get better with time. They told me this for 3 years,” and “They seemed to not ask many questions about what I was experiencing, making me feel as though I was wasting their time.”

Jeremy Payne, Endometriosis UK chief executive, said: “Although most doctors are doing a good job, there is still a level of ignorance about endometriosis, which – while not surprising – is disappointing.

“The fact that women are still being advised to get pregnant when it has long been known that, while this can reduce the symptoms for some women, for many it doesn’t and symptoms can return, is frustrating.”

Research by Endometriosis UK in 2006 found an 11-year delay in diagnosis, and this latest survey suggests that endometriosis may have a greater impact on the quality of life of teenagers and younger women than has previously been recognised.

Mr Payne added: “This all underlines the need for more research into this condition and ideally the development of new therapies with fewer side effects and therefore better suited to prescribing to a younger age group.

“This survey reinforces what we already know – endometriosis can be a debilitating condition and yet too many women are having unsatisfactory pain relief via the pill or painkillers.

“It’s shocking that the average time taken to correct diagnosis is 11 years.”

Endometriosis is a condition where patches of the womb lining occur in other parts of the body. During the monthly cycle, hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding has no way of leaving the body, leading to inflammation, pain, and the formation of scar tissue.

Most patients – once diagnosed with endometriosis – are treated through medication and in some cases surgery. For many, a range of alternative and complementary therapies have also delivered some degree of success in alleviating symptoms and pain. Endometriosis UK has a dedicated helpline on 0808 808 2227 and local groups providing vital support and information. For further information go to www.endometriosis-uk.org.