First, though, I want to thank everyone who took the time to share their endometriosis stories here, with all of you.
I truly believe that we all have a story to tell, and that as long as we are honest, open and willing, what comes from the heart, goes to the heart.
MYTH - Having a hysterectomy will cure endometriosis.
FACT - Having a hysterectomy will treat endometriosis only on the organs that are removed. If all disease is not removed you will continue to experience symptoms. Since endometriosis can grow outside of the uterus, the removal of reproductive organs will not remove the endometriosis. A hysterectomy can, however, be an way to treat many of the more painful symptoms of endometriosis (such as painful and/or heavy menstruation) .
From a medial standpoint, there has never been a biopsy controlled study showing that menopause cures endometriosis. The same is true with the removal of the ovaries.
If the endometriosis implants are responsible for symptoms such as pain with intercourse, diarrhea, painful bowel movements, painful or frequent urination, than having a hysterectomy performed will not change these symptoms.
MYTH - Endometriosis always leads to infertility
FACT - Though endomertiosis can cause infertility in approximately 35% of women who have it, pregnancy can be achieved with the right treatment and partnership with the right healthcare professionals.
MYTH - Endometriosis can be diagnosed through ultrasound, MRI, CT scans or other diagnostic test.
FACT - Endometriosis can only be diagnosed and staged positively, through surgery. Either by having a laparoscopy or a laparotomy where biopsies are taken.
MYTH - Hormonal treatments cure endometriosis
FACT - Though some women experience long term relief of symptoms through hormonal treatments like birth control pills, progesterone, and lupron, they do not eliminate endometriosis implants. Though some implants may become smaller, less visible or less hormonaly active with these medical therapies, they do not disappear. Once medical therapy is stopped, symptoms tend to reappear.
MYTH - Lifestyle changes cure endometriosis
FACT - Though some women experience long term relief of symptoms through dietary, exercise and lifestyle changes, they do not eliminate endometriosis implants.
MYTH - Pregnancy cures endometriosis
FACT - During pregnancy ovulation stops and a woman's body is deprived of estrogen . This can reduce the symptoms that she may have been experiencing prior to getting pregnant, but it will not cure or eliminate endometriosis.
MYTH - Period pain is normal
FACT - Pain is our body's way of telling us something is wrong, it should not be ignored. Though many women and girls experience pain each month around menstruation, severe pain that interferes with daily life is not normal and should be brought to a medial professionals attention.
MYTH - Endometriosis is cancerous
FACT - It is not. The connection between endometriosis and cancer is not fully understood and needs more medical research.
MYTH - Endometriosis is hereditary
FACT - There is genetic theory being studied worldwide by doctors based in London. There is strong evidence that endometriosis is, in fact, hereditary. Early studies have shown that women with a family history of endometriosis are more likely to have a daughter who suffers from this disease. This theory is still being studied and no evidence has been published as of yet.
MYTH - Endometriosis is a rare disease
FACT - It is a painful, chronic disease that effects 5.5 million women and girls of child bearing age in North America, and millions more worldwide. It is the most common gynecological disease.
FACT - Endometriosis is a chronic disease with no cure
What is Endometriosis?
Here are a list of on-line resources that may be helpful in researching Endometriosis
The Advanced Gynecological Surgery Institute
Endometriosis Research Center
Endometriosis.org - Global Forum
World Endometriosis Research Foundation
Center for Endometriosis Care
World Endometriosis Society
On-line Endometriosis Support
*Many of the organizations listed above have support groups available*
WebMD on-line forum
Endometriosis Facebook Groups
*There are MANY! These are the ones that I belong to and find helpful, informational and supportive*
EndoCenter of Chicagoland
Finding Peace with Endo
Powerful Endo Women
Keep an eye on this!
Endo What? Movie
...and, check these out
Peace With Endo
Really great article that I think is worth checking out
How to know if your period pain is really endometriosis (Elle November 2015)
Books that I have found helpful
*Just my two-cents*
Integrative Women's Health - Victoria Maizes, MD & Tieraona Low Dog, MD
From Pain to Peace With Endo; Lessons Learned on the Road to Healing Endometriosis - Aubree Deimler
Endometriosis For Dummies - Joseph W. Krotec, MD & Sharon Perkins, RN
Menopausal Years: The Wise Woman Way - Susun S. Weed
And, please, remember to surround yourself with supportive people. If a loved one or close friend doesn't understand what you are going through, open up those lines of communication and explain what you are going through. A great way to start that conversations is "What do you want to know about my endometriosis?" They still may not "get it". And, that's okay. As long as they are willing to understand, there is hope of being understood. Stay clear of the naysayers or those who diminish you or your symptoms in any way. Negativity exists out there, we all know that, and we are all going to experience it. Don't let someone second guess what you are going through, though. They are not being supportive.
Information exists out there.
Education yourself, find the reliable sources and spread them.
Awareness is key
Become an advocate
Tell your story & scatter hope