Endometriosis: Facts You've Probably Never Heard

As my struggles with my endometriosis have worsened over the past few months, I've found myself thinking - if people really knew the facts about endometriosis, would they still treat sufferers with such indifference?  I think not... which is why I'm launching this new awareness campaign:  Things You Didn't Know About Endometriosis.  Today I'm going to list a series of facts about endo that most people who don't have the disease (medical practicioners included) probably don't know.  After that, I'm going to highlight each fact in its own blog post, including personal testimonies from endometriosis sufferers, medical research, case studies, surgical reports, and anything else I can gain access to.  I encourage you to share these posts with your family, friends, and doctors - both endo sufferers and non-sufferers.  Maybe, together, we can increase understanding of this disease in both the general population and the medical community... and maybe, if we can't bring an end to our suffering, we can at least decrease it.

Before I get into the little known facts, I want to give a brief overview of what endometriosis is, for anyone who might not know.  Endometriosis is a chronic disease of the female reproductive system for which there is no cure.  Endometriosis occurs when the endometrial lining (which normally grows inside the uterus to allow a growing embryo to implant, or is shed during a monthly period) actually grows *outside* the uterus.  Endometrial tissue can commonly be found on the uterus, fallopian tubes, ovaries, bladder, and pelvic cavity walls of endometriosis sufferers.  It can also travel to more distant organs.  Occasionally, endometriosis causes cysts - fluid or semi-solid sacs - to form on the ovaries.  This abnormal tissue can cause a variety of issues in the pelvic cavity, as it is actual, solid tissue that is not meant to be there.  Endometriosis can cause severe pelvic pain, abnormal and heavy periods, and infertility, among other things.

Normal uterus vs. Endometriosis

Here's a little something to help put this into perspective.

The definition of Endometriosis, from the National Library of Medicine:  "Endometriosis is a female health disorder that occurs when cells from the lining of the womb (uterus) grow in other areas of the body."

The definition of Cancer, from the National Library of Medicine:  "Cancer is the uncontrolled growth of abnormal cells in the body."

There is certainly one main difference between the two:  Cancer cells are malignant, and will grow uncontrollably until they take over healthy cells.  They grow at an unsually rapid rate, which is what causes this disease to be fatal.  Endometrial cells are not malignant.  They grow at a normal rate, thus the disease does not usually result in death.  But look at the similarities.  Abnormal cells, cells that don't belong where they are found, that can grow anywhere in the body... on healthy organs... encroaching on the space they need to perform their life-sustaining functions.  Malignancy.  That's the difference.  Not so different after all, it seems... especially when you consider the following:

• Endometriosis can grow anywhere in the body.  It is most commonly found on pelvic organs/in the pelvic cavity, but it has also been found in previous surgical scars, on the bladder, ureters and kidneys, on the bowel (intestines, colon, appendix, rectum) and even rarely inside the vagina, inside the bladder, on the skin, in the lungs, on the spine and even in the brain.

Possible sites of endometriosis

• Endometriosis can be fatal!  Endometrial tissue can cause internal hemorrhaging, undetectable by a CT scan, and result in death.  Don't believe me?  Read one sufferer's account here.
• An estimated 10% of women are affected by endometriosis.  That means that, if you think of yourself and nine female friends, chances are that one of you has endometriosis, whether it has been diagnosed or not.
• On that note, endometriosis often goes undiagnosed because women think they are just having painful periods.  Because it can only be confirmed by laporoscopic surgery and biopsy, many women suffer without ever knowing what is causing their pain.
• Though up to 10% of the female population is affected, not everyone suffers from endometriosis to the same degree.  In fact, endometriosis is diagnosed in stages (once again similar to cancer) from I (minimal) to IV (severe) based on the extent, location and depth of the abnormal tissue.
• Contrary to what society and some doctors will tell you, extremely painful periods are not normal!  If your 'cramps' are so severe that they interfere with your life and ability to function normally, something is wrong.  It is not normal to suffer so severely that you can't even get out of bed for several days each month - seek help!
• Endometriomas - ovarian cysts caused by endometriosis which do not usually resolve on their own and require surgery to remove, can range from sizes smaller than a pea to sizes larger than a grapefruit.

• There is no cure.  All treatments for endometriosis are aimed at reducing the pain and impact on other internal organs, and sometimes preserving fertility.  No known treatment effectively cures endometriosis in all patients.  It is a common misconception that pregnancy, menopause, or a hysterectomy will 'cure' endometriosis.  They will not.  Once the endometrial tissue has begun to grow outside the uterus, removing the uterus or the hormones will not always make it 'disappear'.  Many women suffer their entire lives.
• Some of the treatments are brutal.  First line treatment includes hormonal birth control, which can have serious side effects for many.  Second line treatment is surgery.  Other treatments include other hormonal medications with even more serious side effects, which often require other medications to counteract.  For some, the treatment is as bad or worse than the disease.  This starting to sound like any other disease you've heard of?
• In advanced stages, endometriosis tissue and adhesions can actually cause the abdominal organs to fuse together!
• No one is too young to have endometriosis.  Many women begin to experience their symptoms in adolescence (as I did)!  In fact, upon my diagnosis (at age 18), my doctor told me that one of the worst cases he had ever seen was in a fifteen year old girl who had only been menstruating for about two years.
• Endometriosis can cause infertility in 30-40% of sufferers even if the fallopian tubes are not compromised.  The reason for this is still largely unknown, but it is a very real issue for many women who try... and try... and try... and fail... and fail... and fail... to get pregnant.
• Endometriosis goes hand in hand with any number of other conditions.  Pelvic Inflammatory Disease (PID), Irritable Bowel Syndrome (IBS), sexual dysfunction, as well as other digestive, urinary, bleeding and even psychological conditions are often caused or impacted by endometriosis.
• Endometriosis is, in fact, referred to by endo specialists across the country as "the benign cancer", because it acts so similarly to cancer without being malignant.

Saying this is what it feels like is an understatement.

So, dear doctor who felt the need to tell me it was "not necessary to admit endometriosis patients for pain control" in the emergency room tonight, perhaps if you educated yourself a bit on the disease you are supposed to be treating, you might understand that even though it doesn't kill in as huge numbers as cancer, endometriosis can be devastating, your tests can be wrong, and your judgment is harmful.  Next time I see you... I will be armed with information.  And to you friends and family of someone who has endometriosis... remember the quote:  "be kinder and gentler than necessary, for everyone you meet is fighting some kind of battle."  Your friends and family members may not be fighting cancer, but they are fighting a disease, and it is a brutal disease with brutal treatments.  They need you now more than ever.  And to my endo sisters... take a moment just to reflect on this sentence... you are not alone.  Imagine if, when you walked into the ER for the umpteenth time because your pain was out of control, you were surrounded by other women also suffering from endometriosis.  Imagine how supported you would feel.  Well, sisters, we may not always be able to be there for each other in person, but we ARE here for each other, in spirit, in support.  We know how it feels.  You don't have to go it alone.  Reach out to those who understand, and arm yourselves with information for those who don't.

Sources:

1. National Library of Medicine.  Retrieved August 14, 2013, from http://www.google.com

2. Facts About Endometriosis.  Endometriosis.org.  Retrieved August 14, 2013, from http://endometriosis.org/resources/articles/facts-about-endometriosis/

3. About Endometriosis.  Endometriosis.org.  Retrieved August 14, 2013, from http://endometriosis.org/endometriosis/

4. Myths and Misconceptions in Endometriosis.  Endometriosis.org.  Retrieved August 14, 2013, from http://endometriosis.org/resources/articles/myths/

5. Endometriosis:  A Guide for Patients.  American Society for Reproductive Medicine.  Retrieved August 14, 2013, from  http://www.asrm.org/Endometriosis_booklet/

6. Endometriosis In-Depth Report.  New York Times.  Retrieved August 13, 2013, from http://health.nytimes.com/health/guides/disease/endometriosis/print.html