Endo Awareness Month: Understanding Endo

Amy Stein and Fiona McMahon

Beating Endo Cover

March Is Endometriosis Awareness Month. Treating endometriosis and improving the lives of people with endometriosis, has long been a passion of Dr. Amy Stein, founder of Beyond Basics Physical Therapy, so much so, that she teamed up with Dr. Iris Orbuch and wrote a book about it! This month we are reviewing some of the major talking points in their book, Beating Endo. Available here.  For more on endometriosis, check out our past blogs as well as Beating Endo.

Endometriosis is a condition that affects people born with female anatomy. It occurs when a tissue similar to that of lining of the uterus (known as the endometrium) grows outside of the uterus. Seems like a pretty simple definition, but it can cause a whole host of symptoms.

When something that doesn’t “belong” in the body is detected by the body, inflammation will occur. It is this inflammation that is believed to cause the myriad symptoms someone with endometriosis may experience. These symptoms can include

  • Irritable bowel syndrome (IBS)
  • Painful bladder syndrome
  • Pelvic floor dysfunction

One of the confusing things is, you don’t have to have all of these symptoms to have endo and the severity can range. This is Fiona writing, and I’m sure Amy would agree, no two endo patients are alike, and your pain is valid even if your symptoms do not necessarily look like someone else’s’ who is suffering with endo. It is this variability in presentation along with poor awareness within the medical field and public, leading to an average of 7 to 12 years to get a diagnosis.

Endometriosis can only be diagnosed by analyzing the suspected endometrial lesions removed during an excision surgery. There is no other test to confirm it, which can make diagnosis obviously, very difficult.

There is another condition that is called Adenomyosis. Similar to endo, adeno occurs when cells similar to the lining of the uterus occur within the muscular wall of the uterus. Most people with adeno have endo, but it is not always true that most people with endo have adeno. Adeno can show up as heavy periods, low back pain, and pelvic pressure.

Endometriosis is a chronic illness that affects millions of people. There is still a lot to figure out about endo and because of that fact there are many truths, half-truths, and myths floating around out there about endo. Check out some of the myths Amy and Iris busted together in Beating Endo.

Common Endo Myths

The abdominal and pelvic floor muscles are rarely affected by endometriosis.

False: Constipation, frequent urination or retention, pain with vaginal penetration from endometriosis causes tightening of the abdominal and pelvic floor muscles; So too does assuming the fetal position which is our go to pose when we are in pain. Both contribute to tight abdominal and pelvic floor muscles which causes pain.

The pelvic floor and abdominal muscles do not cause bladder, bowel, sexual dysfunction or abdominal-pelvic pain in patients with endometriosis.

False: Tight pelvic floor muscles caused by years of straining or reflexive tightening due to pain, often cause a severe amount of pain which results in further tightening and shortening of the pelvic floor muscles. Good news is that pelvic floor physical therapy benefits most people who have been experiencing abdomino-pelvic or sexual pain and/or are straining due to ongoing bladder and bowel symptoms.

Hysterectomy is a cure for endometriosis.

False: Hysterectomy is neither a treatment nor a cure. By definition endometriosis consists of cells similar to those in the lining of the uterus but found outside the uterus. Only surgical ‘excision’ removes endometriosis cells.

Medical menopause is a cure for endometriosis.

False: Just because your medicines give you hot flashes doesn’t mean your endometriosis is going away. The best treatment approach is to meet with an endo specialist to discuss options, and in most cases PT management. As well surgical excision has much better results than ablation of Endometriosis.

There is no correlation between quantity of endometriosis and severity of disease.

Truth: Even if you have a minimal amount of endometriosis, you can be in debilitating pain with lots of symptoms and in most cases dietary changes, physical therapy and mindfulness practices can help manage a lot of your symptoms.

Teenagers are too young to have endometriosis.

False: Teenagers can have endometriosis and their endometriosis can cause debilitating symptoms.

Pregnancy is a cure for endometriosis.

False: Just plain no. Pregnancy does not cure endometriosis.

Ablation surgery is the same as excision surgery.

False: Not even close. Excision surgery is the proper treatment for endometriosis. Ablation surgery, burns the surface of the endometriosis lesion but leaves the bulk of endometrial implants behind.

Surprising Endo Facts:

Fact: Physical therapy (pelvic PT) can help many suffering from the many pains and symptoms of Endo, including back, abdominal and pelvic pain, bladder, bowel and sexual function.

Fact: The majority of patients with Endometriosis require pelvic floor physical therapy. Pelvic floor PT can be instrumental in the healing process and can help abdominal-pelvic pain, bladder and bowel urgency, frequency, retention, incomplete emptying, and any sexual pain related to the musculoskeletal system.

Truth: Painful bowel movements, constipation, diarrhea and bloating are symptoms of endometriosis as well as symptoms of pelvic floor dysfunction .

Truth: Painful sex is a symptom of endometriosis as well as a symptom of pelvic floor dysfunction.

Truth: 40 to 50% of women with unexplained infertility is caused by Endometriosis.

Truth: Teens with endometriosis often have acyclic pain, that is, pain at other times of the month rather than only during their period, in addition to cyclic pain.

Truth: Back pain is a symptom of endometriosis.

Truth: If your ultrasound is normal you can still have endometriosis.

Truth: roughly 10% of women have endometriosis. That’s close to 200 million women worldwide. Endometriosis is much more than just bad period pain. 1 in 4 women have pelvic floor dysfunction.

Truth: Endometriosis commonly affects the musculoskeletal system, and in many cases can be a primary contributor to one’s pain and symptoms.

 

Orbuch I, Stein A. Beating Endo. New York. Harper Collins. 2019

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