What is endometriosis?

Endometriosis is tissue similar, but not identical, to the lining of the uterus that is found elsewhere in the body. This tissue creates lesions that may cause pain, inflammation, organ dysfunction and may lead to infertility. Endometriosis is most often found in the pelvis, but has also been found in the bladder, bowels, diaphragm, lungs, kidneys and even the brain. 

Endometriosis is common – affecting 200 million people worldwide. It occurs in at least 7-15% of women. Some experts believe it could be more like 25%.

Why is the definition of endometriosis important to get right?

Many publications – even of high-profile medical centers – incorrectly define endometriosis as “misplaced uterine tissue” or when “endometrium grows outside of the uterus.” Both of these statements are incorrect. Why does it matter? Heather Guidone, decades-long endometriosis advocate, explains it best below:

“It matters on every level. The failure to define endometriosis correctly excuses the failure of research and treatment and prevents access to quality care for all but a select population.

It continues to uphold archaic suppositions that endometriosis results from ‘normal’ tissue that simply implants hither and yon – meaning, since it’s just fragments of “normal tissue”, endometriosis can be easily cured by simply stopping periods through hysterectomy, pregnancy, menopause or long-term suppressive drug therapy. It can’t, and it isn’t.

It ignores the documented fact that the disease is entirely possible in those without a uterus or in people without periods. It relegates endometriosis to the category of some simplistic ‘menstrual disorder’ or ‘SYNDROME’ which can be easily treated by any physician, with equal outcomes, with no need for referrals to experts, and ultimately remove barriers to equal quality care for all.

It turns a blind eye to the systemic, all-encompassing impact on every aspect of an affected individual’s physical, mental and emotional quality of life. It directs research towards studies lacking in real world benefit which are designed to further promote the same therapies already proven to fail. It ignores the results of high caliber surgeons with excellent long-term outcomes in favor of industry-sponsored, industry-favorable studies and results.

It upholds the broken system. It’s way past time for better.”

What are the signs and symptoms of endometriosis?

Endometriosis symptoms vary widely from person to person. This is one reason why endometriosis is so difficult to diagnose (an average of 10 years delay). One person may have extremely painful menstrual cramps while another may have no pain, but may experience nausea, bloating or other IBS type symptoms. Yet another person may not have any symptoms until she has trouble becoming pregnant. Whatever your symptoms may be, they may or may not follow a pattern – symptoms may be constant, sporadic or cyclical in nature. 

Here are common signs and symptoms:

  • Pelvic pain during menses, before menses, after menses and/or anytime during the month
  • Constipation
  • Bloating
  • Painful intercourse usually with deep insertion or certain positions
  • Infertility
  • Right and/or Left sided pelvic and abdominal pain
  • Diarrhea
  • Painful bowel movements
  • Urinary frequency, and/or urgency, and/or painful voiding
  • Fatigue
  • Malaise
  • Lower back pain
  • Heavy or irregular periods

Where is endometriosis pain?

Pain due to endometriosis is often related to the areas where endometriosis invades. For example, endometriosis in the pelvis may cause painful sex or GI issues. Endometriosis on the ovary can lead to left sided or right sided pain. Bladder endometriosis may lead to urinary frequency or urgency. You may have only one of the above symptoms or many. Even one symptom can be suggestive of endometriosis.  Some people have no pain at all yet suffer from infertility due to endometriosis.  If your doctor told you that you have ‘unexplained infertility’, endometriosis is the culprit in 40-50% of cases of unexplained infertility. 

What are endometriosis causes & risk factors?

It is important to note that while the following risk factors increase one’s likelihood for endometriosis, there are many women who develop endometriosis without any of the following risk factors:

  • Family history, especially mother or sister. If your mother or sister has endometriosis, you have a 7x higher risk of developing endometriosis.
  • Early onset of periods
  • Short frequent menstrual cycles
  • Autoimmune disorders (thyroid, rheumatoid, eczema, food allergies/sensitivities)

How can I get a diagnosis of endometriosis?

Endometriosis can only be diagnosed through surgery with presence of the disease confirmed through pathological biopsy. While endometriomas and nodules may be visualized on ultrasounds and MRIs, the majority of endometriosis and related adhesions often evade ultrasounds, MRIs, CAT scans and other testing, such as colonoscopies. A negative imaging result does not rule out endometriosis.

What are endometriosis treatments?

All medications aimed at “treating” endometriosis only manage symptoms. They do not treat the disease itself. Drug therapy can suppress endometriosis, not eradicate it.

Excision surgery is the gold standard treatment for endometriosis where all endometrial lesions are surgically removed. Unfortunately, most OBGYNs are not trained in excision surgery and instead practice ablation surgery where they burn the surface of the lesion and often leave endometriosis behind. 

It is important to note that excision surgery is the first step, not the only step, in a multi-disciplinary treatment regimen that may involve physical therapy, central desensitization, nutritional approaches and more.

Hysterectomy is NOT a treatment of endometriosis, nor is pregnancy. If your doctor suggests either to treat your endometriosis, this is a red flag that your doctor is misinformed.

What are the stages of endometriosis?

Endometriosis is classified into 4 stages: I-minimal, II-mild, III-moderate, and IV-severe. Staging has been defined by the American Society for Reproductive Medicine (ASRM). Their criteria based on: the location of the disease, extent, depth of endometriosis implants, presence and size of ovarian endometriomas, and the presence and severity of adhesions.

The stages listed are not indicative of pain level, rather related to probability of infertility. So it has no real correlation with any symptoms. Therefore, a person can be Stage IV and have no symptoms whatsoever. Conversely, a person can be Stage I and experience excruciating pain. 

What are the causes of endometriosis?

The cause of endometriosis is unknown. Multiple theories exist but are unconfirmed including: Stem Cell Theory, Mulleriosis & Embryonic Origin Theory, Genetics and others. Read more here

Should I have surgery for endometriosis?

As medications only provide temporary relief for symptoms, if at all, surgery for endometriosis will likely be necessary. It is of utmost importance that your first surgery be with the best qualified surgeon who is well-trained and has experience treating endometriosis. Endometriosis should not be the path of multiple surgeries. It should be 1 surgery done right.

Laparoscopic excision surgery is considered the gold-standard treatment for endometriosis. Excision surgery by a qualified surgeon who meticulously removes endometrial lesions from all areas, without damaging surrounding structures or removing otherwise healthy organs is a key first step, but not the only step, in a multidisciplinary approach to correctly treating endometriosis. 

If you need help finding a qualified surgeon, we recommend joining Nancy’s Nook Endometriosis Educate group on Facebook as a first step. 

How does endometriosis affect fertility?

Up to 50% of unexplained infertility cases are due to endometriosis.  In some people, infertility may be the only symptom. In others, one or more of the following endometriosis symptoms may be present: painful periods, constipation, diarrhea, painful bowel movements, back pain, painful sex, abdominal pain, pelvic pain, bloating, urinary frequency, or painful urination. 

Infertility from endometriosis occurs due to (1) inflammation and/or (2) structural anatomical scarring/adhesions in the pelvis.  Endometriosis also affects a woman’s ovarian reserve and can lead to poor egg quality.

Excision of endometriosis may improve fertility by decreasing inflammation and can restore the pelvic anatomy.  At times, some women even get pregnant spontaneously post excision and will not require IVF.

What is the endometriosis diet?

While there is no one endometriosis diet, following an anti-inflammatory diet can make an enormous impact on how you feel. Every individual reacts to foods differently so what may be a trigger food for you may not bother someone else. The below lists are general guidelines. We recommend you consult with a licensed nutritionist to put together an eating plan that works for your body and circumstances.

Foods to Eat Sparingly or Avoid to Help Avoid Inflammation

  • Refined carbohydrates, such as white bread, pastries, and sweets
  • Foods and drinks that are high in sugar, including soda and other sugary beverages
  • Red meat
  • Dairy
  • Processed meat, such as hot dogs and sausages
  • Fried foods
  • Gluten

Anti-Inflammatory Foods to Eat

Source: Everyday Health

Should I get a hysterectomy for endometriosis?

Hysterectomy is not a treatment for endometriosis. Endometriosis by definition is found outside of the uterus. Removing the uterus does not affect the lesions still remaining in other parts of the body. Most OBGYNs are incorrectly educated about this and may recommend hysterectomy as treatment for endometriosis erroneously.

What are natural remedies for endometriosis?

It is important to know that any natural remedies that you pursue for endometriosis will only manage symptoms, they will not actually treat the disease. At present, the only treatment for endometriosis is laparoscopic excision surgery where the lesions are removed from the body.

That said, there are several natural remedies you may pursue that can help alleviate symptoms. A few suggestions are an anti-inflammatory diet, stress management, acupuncture, herbs, castor oil packs (amazing in a flare), aromatherapy, hot bath, gentle yoga or exercise and more.

Source: Greatist

What are the associated conditions to endometriosis?

Endometriosis may be linked to several conditions including melanoma, interstitial cystitis, irritable bowel syndrome/inflammatory bowel disease, chronic headaches, chronic low back pain, vulvodynia, fibromyalgia, TMJ, chronic fatigue syndrome, as well as mood conditions (defined as depression and anxiety) and asthma, migraines, endocrine disorders, thyroid disease and more. 

Source: Center for Endometriosis Care

Can teenagers get endometriosis?

Endometriosis is common in teenagers, especially in those who have a history of painful periods and pelvic pain. In fact, 70% of teens with chronic pelvic pain are later diagnosed with endometriosis. The pain can be either cyclical or non-cyclical.  Other common symptoms for teenagers include painful bowel movements, constipation, intestinal cramps, bladder pain. Teenagers who are already sexually active may report painful sex.

Many times endometriosis symptoms do improve with nonsteroidal anti-inflammatory (NSAIDs) and/or the birth control pill. However, it is important to remember that endometriosis may progress while the symptoms are masked. It is important for a teenager to see a specialist in endometriosis. 

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