Get the Facts
Endometriosis is a condition where cells similar to the lining of the uterus are found in other parts of the body, most commonly on pelvic organs, such as the bowel, bladder, ovaries, fallopian tubes, rectum, vagina, cul de sac, and peritoneum (lining of the pelvis). Less common areas include the diaphragm, lungs, and even the spine or brain. Endometriosis affects 1 in 10 women, or 176 million women worldwide, with an average delay in diagnosis ranging from 6-10 years. Years of misdiagnosis and ineffective treatment negatively impacts the patient's quality of life. The physical, emotional, and social effects of endometriosis can be lessened with early diagnosis and complete surgical excision in many cases, particularly in coordination with a multidisciplinary approach to treating pain holistically. AMAME strives to get patients talking about their endometriosis instead of hiding it.
Endometriosis is a very misunderstood disease. There are many theories of how and why patients develop Endometriosis. Current research suggests that Endometriosis is laid down during embryonic development. Endometriosis differs from the endometrium in a variety of histological and pathological ways, and research suggests a mutation in gene expression during embryogenesis. Endometriosis can become active upon menarche, but some experience symptoms before puberty. It is believed that environmental factors may play a role. Often, when Endometriosis is suspected, the first line of treatment is to put the patient on birth control or hormonal suppression and find out how she responds. This is called a medical diagnosis. The only way to diagnose and treat Endometriosis is through laparoscopic surgery. Also called a “lap,” this surgery is done minimally invasively by inserting a tiny camera through small incisions in the abdomen to take a look inside the pelvis. The surgeon will look to identify any signs of Endometriosis.
Several types of treatment are commonly used to remove or destroy existing Endometriosis lesions. Ablation, vaporization, and other types of electrocautery destroys the tissue using heat. This is the most commonly used type of surgical treatment, but does not completely remove disease, nor does it remove tissue samples to be analyzed by pathology. It can also leave behind char and damage to healthy tissue. Excision is considered the gold standard of treatment. About 100 out of 52,000 obgyn surgeons in the United States perform this type of surgery, which cuts out the entire lesion, root to tip, like a cancer. The tissue is then sent to pathology to be analyzed and official diagnosed.
Excision surgeons use wide margins, leaving behind only healthy tissue. This type of surgery takes a lot of skill and dedication, as it is time consuming to meticulously search for and remove all forms of Endometriosis. However, chance of recurrence is about 10-20% with a highly skilled excision specialist, as opposed to 70-80% chance of recurrence with ablation.
Endometriosis Research Center (2014). Do You Have Endo? Retrieved from http://www.endocenter.org/killercramps.htm
Hummelshoj, L. (2012). Gene mutation may shed new light on different types of endometriosis. Retrieved from http://endometriosis.org/news/research/gene-mutation-may-shed-new-light-on-different-types-of-endometriosis-new-screening-methods/
Redwine, D. Is endometriosis an autotransplant? Retrieved from http://endopaedia.info/origin36.html
Signorile, P.G. et al (2012). Embryologic origin of endometriosis: analysis of 101 human female fetuses. Journal of Cellular Physiology, 227 (4), pp. 1653-6. http://www.ncbi.nlm.nih.gov/pubmed/21678420
Simoens, S., Hummelshoj, L., & D’Hooghe, T. (2007). Endometriosis: cost estimates and methodological perspective. Human Reproduction Update, 13(4), pp. 395-404. http://www.ncbi.nlm.nih.gov/pubmed/17584822
Endometriosis is a very misunderstood disease. There are many theories of how and why patients develop Endometriosis. Current research suggests that Endometriosis is laid down during embryonic development. Endometriosis differs from the endometrium in a variety of histological and pathological ways, and research suggests a mutation in gene expression during embryogenesis. Endometriosis can become active upon menarche, but some experience symptoms before puberty. It is believed that environmental factors may play a role. Often, when Endometriosis is suspected, the first line of treatment is to put the patient on birth control or hormonal suppression and find out how she responds. This is called a medical diagnosis. The only way to diagnose and treat Endometriosis is through laparoscopic surgery. Also called a “lap,” this surgery is done minimally invasively by inserting a tiny camera through small incisions in the abdomen to take a look inside the pelvis. The surgeon will look to identify any signs of Endometriosis.
Several types of treatment are commonly used to remove or destroy existing Endometriosis lesions. Ablation, vaporization, and other types of electrocautery destroys the tissue using heat. This is the most commonly used type of surgical treatment, but does not completely remove disease, nor does it remove tissue samples to be analyzed by pathology. It can also leave behind char and damage to healthy tissue. Excision is considered the gold standard of treatment. About 100 out of 52,000 obgyn surgeons in the United States perform this type of surgery, which cuts out the entire lesion, root to tip, like a cancer. The tissue is then sent to pathology to be analyzed and official diagnosed.
Excision surgeons use wide margins, leaving behind only healthy tissue. This type of surgery takes a lot of skill and dedication, as it is time consuming to meticulously search for and remove all forms of Endometriosis. However, chance of recurrence is about 10-20% with a highly skilled excision specialist, as opposed to 70-80% chance of recurrence with ablation.
Endometriosis Research Center (2014). Do You Have Endo? Retrieved from http://www.endocenter.org/killercramps.htm
Hummelshoj, L. (2012). Gene mutation may shed new light on different types of endometriosis. Retrieved from http://endometriosis.org/news/research/gene-mutation-may-shed-new-light-on-different-types-of-endometriosis-new-screening-methods/
Redwine, D. Is endometriosis an autotransplant? Retrieved from http://endopaedia.info/origin36.html
Signorile, P.G. et al (2012). Embryologic origin of endometriosis: analysis of 101 human female fetuses. Journal of Cellular Physiology, 227 (4), pp. 1653-6. http://www.ncbi.nlm.nih.gov/pubmed/21678420
Simoens, S., Hummelshoj, L., & D’Hooghe, T. (2007). Endometriosis: cost estimates and methodological perspective. Human Reproduction Update, 13(4), pp. 395-404. http://www.ncbi.nlm.nih.gov/pubmed/17584822
I've been diagnosed...now what?
Now that you’re diagnosed, there are many ways to help reduce your pain and improve your quality of life.
Laparoscopic surgery can diagnose and treat the disease
Excision is the gold standard
Rule out and treat co-morbid diseases
Medications can mask symptoms temporarily. Not recommended long term.
Laparoscopic surgery can diagnose and treat the disease
- Ablation is the most widely used
- has high rate of recurrence
- women have multiple, ineffective surgeries
Excision is the gold standard
- has low rate of recurrence with a highly trained specialist
- only performed by a handful of surgeons
- many women must travel to specialists
- offers best chance at improved fertility and quality of life long term by reducing inflammation and restoring normal anatomy to pelvic organs
- acupuncture
- pelvic floor physical therapy
- meditation
- massage
- moist heat/hot baths
- anti-inflammatory diet
- eat organic, whole foods
- avoid sources of external estrogen in the environment (GMOs, soy, BPA, parabens and sulfates)
Rule out and treat co-morbid diseases
- adenomyosis
- interstitial cystitis
- pelvic floor dysfunction
- adhesions
Medications can mask symptoms temporarily. Not recommended long term.
- birth control pills
- GnRH agonists and antagonists
- progesterone-only pills/suppositories
- IUD devices
- Depo-provera
Endometriosis Myths
Endometriosis can be cured by pregnancy, hysterectomy, therapy, etc.
There is no cure for Endometriosis. Fluctuations in hormones in the body can temporarily mask symptoms, but the pain typically returns, as Endometriosis can produce its own estrogen.
Endometriosis is caused by sexual abuse, tampons, STDs, performing headstands during your period, etc.
Endometriosis is likely laid down during embryonic development. Retrograde menstruation (menstrual blood back-flowing through the Fallopian tubes and into the pelvis) is an outdated and scientifically unproven theory of origin. Retrograde menstruation occurs in roughly 90% of women; however, only 10% of women receive a diagnosis of Endometriosis.
Women develop Endometriosis because they suppress emotions, have experienced trauma, or are not in tune with or love their womanhood.
Endometriosis is not a woman’s fault. It is a disease that can be found, removed, and treated effectively through surgical excision.
Microscopic Endometriosis makes it impossible to remove the disease completely. It will always grow back.
Endometriosis that grows back after multiple surgeries is likely due to missed disease. Under expert care, most women only require one or two surgeries to experience relief from chronic pelvic pain caused by Endometriosis.
I had pain after excision surgery. Excision doesn’t work.
True recurrence can happen, especially if the first surgery was performed during teen years. It is always worth it to get a second look surgery or second opinion to check for missed or recurrent disease, or reevaluate for co-morbid conditions.
I’m on birth control or hormonal suppression. My disease is being treated/prevented, and my fertility is being preserved.
Medical therapies do not prevent or treat Endometriosis. They also do not preserve fertility, since Endometriosis can continue to grow even when pain is suppressed. Some medical therapies can also have negative impacts on ovarian function. Surgically removing Endometriosis and restoring normal anatomic function is the best chance at preventing pain and improving fertility.
There is no cure for Endometriosis. Fluctuations in hormones in the body can temporarily mask symptoms, but the pain typically returns, as Endometriosis can produce its own estrogen.
Endometriosis is caused by sexual abuse, tampons, STDs, performing headstands during your period, etc.
Endometriosis is likely laid down during embryonic development. Retrograde menstruation (menstrual blood back-flowing through the Fallopian tubes and into the pelvis) is an outdated and scientifically unproven theory of origin. Retrograde menstruation occurs in roughly 90% of women; however, only 10% of women receive a diagnosis of Endometriosis.
Women develop Endometriosis because they suppress emotions, have experienced trauma, or are not in tune with or love their womanhood.
Endometriosis is not a woman’s fault. It is a disease that can be found, removed, and treated effectively through surgical excision.
Microscopic Endometriosis makes it impossible to remove the disease completely. It will always grow back.
Endometriosis that grows back after multiple surgeries is likely due to missed disease. Under expert care, most women only require one or two surgeries to experience relief from chronic pelvic pain caused by Endometriosis.
I had pain after excision surgery. Excision doesn’t work.
True recurrence can happen, especially if the first surgery was performed during teen years. It is always worth it to get a second look surgery or second opinion to check for missed or recurrent disease, or reevaluate for co-morbid conditions.
I’m on birth control or hormonal suppression. My disease is being treated/prevented, and my fertility is being preserved.
Medical therapies do not prevent or treat Endometriosis. They also do not preserve fertility, since Endometriosis can continue to grow even when pain is suppressed. Some medical therapies can also have negative impacts on ovarian function. Surgically removing Endometriosis and restoring normal anatomic function is the best chance at preventing pain and improving fertility.