myths

Myths & Misinformation

Lupron a cure for Endometriosis? Believe that one, and I've got a bridge to sell you.

Let's first address the fact that not only are GnRHs like Lupron not a cure, but there is currently no definitive cure for Endometriosis. Given the current research underway, there certainly may be one on the horizon, but the best we can hope to attain at this time is long-term remission...which, thankfully, is completely possible when working in partnership with an Endometriosis specialist. We owe a debt of gratitude to the men and women, lay persons and professionals alike, who do treat the disease seriously and who have dedicated their lives to understanding it better. It is these people who will lead the way to early detection and definitive treatment for the Endometriosis daughters of the future. Unfortunately, however, the longer certain members of the medical establishment continue to prescribe stop-gap measures without addressing the significant need for a cure, the longer we will be without one.

What can we do to help speed the process along? Get educated. Get involved. With awareness comes recognition of needs: the need for more funding for disease research, the need for better support of patients with Endometriosis, the need for more doctors to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure. Women with Endometriosis do not deserve to have to travel thousands of miles, often at their own expense, for effective treatment with an Endometriosis specialist because they are few and far between. Women should not have to resort to ER visits on a monthly basis because they are crippled with unresolved pain. Women should not be misled as to the efficacy of their treatment options and blamed for the subsequent - yet inevitable - return of symptoms at the treatment end. Most of all, women with Endometriosis do not deserve to feel alone with their disease.

Let's begin the education process by debunking some 100+ yr. old myths about Endometriosis which, unbelievably, are still circulating today. The more we know, the more we can take charge of our own healthcare. The more we take charge, the more empowered over Endometriosis we become.

Fallacy Number One: Endometriosis is a career woman's disease.
Most likely, these "career women" were the ones that sought medical care most often, and therefore obtained the most diagnoses. We know now, of course, that Endometriosis knows no barriers whatsoever and is found in every socio-economic and ethnic class world-wide. For more background information on Endometriosis, read "Endometriosis 101: the Basics."

Myth Number Two: Endometriosis only affects women in their reproductive years.
While certainly most prevalent in reproductive-aged women, especially those in their 20s and 30s, Endometriosis has been found in the autopsies of infants, in 7 year old girls, in women well into their 80s, in post-hysterectomy and menopausal women; and even in a few men who were treated with estrogen for certain cancers.

Sadly Mistaken Idea Number Three: Pregnancy and/or hysterectomy will cure Endometriosis.
It is frightening to know that students just out of med school, when asked for treatment alternatives, responded by saying that pregnancy would cure the disease, as would a hysterectomy. Women all over the world are still being offered the same treatments that were initially given when the disease was first mentioned in 1870: "prescribed" pregnancies and hysterectomies. Neither is a definitive cure. For more information on hysterectomy and Endometriosis, click here.

Misleading Myth Number Four: Medications can cure Endometriosis.
There are many non-surgical alternatives to treating the disease, the most common of which are medical therapies like GnRH agonists, oral contraceptives and medroxyprogesterone acetate. Some women are led to believe that such therapies will cure them - they won't. They certainly have their purpose in Endometriosis treatment and can be very useful, even provide long term relief for some. But there has never been any medical evidence to support the notion that they will cure the disease. Women need to be fully informed about the drug they will be taking: what the possible side effects are, what the expected outcome might be, what the realistic expectations of the treatment are...all the pros and cons. They should not be misled to believe that popping a pill or getting an injection will solve all their problems - Endometriosis tends to be a sleeping giant which awakes angrily at the end of the treatment.

On a side note:
GnRHs are still, as of this writing, only FDA-approved for 6 months in a lifetime. While there are trials going on and other research being done into long-term usage, re-treatment beyond a 6 month period is not recommended. Request that your physician perform a bone density scan prior to undergoing GnRH therapy to establish a baseline, and another at the end of treatment to determine if there has been significant loss of trabecular bone density. And always, always establish that you are not pregnant prior to beginning treatment and use caution throughout the treatment period. Although difficult, it is not impossible - and is ill-advised - to become pregnant while undergoing GnRH therapy.

Lupron, like all GnRHs, is a hormonal agent [GnRHs=gonadotrophin releasing hormones]. It was initially used in the treatment of prostate cancer and has since extended into other areas, such as reproductive disorders and precocious puberty. There seems to be a widespread misconception that "Lupron has chemotherapy in it." Chemotherapy is not a substance, it's a concept - it simply means "treatment of disease through chemical therapy."

Should GnRHs be taken prior to surgery? That is a decision best left to the woman and her Endometriosis specialist. Sometimes, GnRH therapy is needed to debulk the disease. However, it can also shrink lesions enough to be missed by a lesser-trained surgeon.

For in-depth information on GnRHs and other Endometriosis treatments, please visit the Endometriosis Research Center on the web.

Misinformed Notion Number Five: Only higher stages of Endometriosis cause pain and infertility.
Stage of disease does not indicate pain or fertility status; it is simply a method by which the disease is scored. While it is true that higher stages (3 and 4) are more likely to be involved in infertility, this is not always the strict case. A woman with stage 1 disease may be debilitated and infertile, while a woman with stage 4 has no symptoms - and vice versa. Staging has been defined by the American Society for Reproductive Medicine (formerly the American Fertility Society), with criteria based on the location of the disease, amount, depth and size. These factors are all graded on a point system and classification is thus determined. The first classification scheme was developed in 1973, but since then it has been revised and refined 3 times for a more precise method of documentation. As of 1985, the stages are classified as 1 though 4; 1-minimal, 2-mild, 3-moderate and 4-severe.

There are many other myths circulating today which continue to hinder the diagnosis and treatment of some women with Endometriosis; these are just a few of the more common ones. In summary, the facts as supported by medical literature: any woman of any age can have Endometriosis, no matter how many children she may have had [or not had, as the case may be]. Currently, the best bet for long term remission is the meticulous excision of disease and care by an Endometriosis specialist.

Luckily, most patients know that these are just myths and will not stand for a physician who subscribes to them. But what of the doctors who don't keep up on current research and the newly diagnosed patients who are not being properly informed? Let's help make a difference - working together, the Endometriosis community will get the answers we seek, doctor and patient alike. Get educated. Get involved. Do your part to help shatter the myths surrounding this disease.

Additional information:
To help raise awareness about Endometriosis, find a support group or clinical trial near you, obtain the latest research or just to learn more about the disease, please contact the Endometriosis Research Center.

BACK HOME