Do You Have Endometriosis? 8 Surprising Facts About the Invisible Illness

Over 176 million women suffer from Endometriosis, with symptoms ranging in variety depending on the individual.

1 in 10 women suffers with endometriosis. That’s just as common (if not more than) as diabetes at 9.4% and asthma at 7.7% (according to the CDC). Additionally, it takes, on average, 10 years or more for a woman with endometriosis to get diagnosed.

How is it that this is even possible in today’s society of advanced medicine?

Well, to give you a little insight, 63% of general practitioners in medicine do not feel comfortable diagnosing or treating patients with endometriosis. As professionals, our work is definitely cut out for us. We desperately need to educate both patients and practitioners alike to help create change.

We at Sarton Physical Therapy have been touched by endometriosis personally, as one of our physical therapists has gone through her own journey. Additionally, after treating thousands of pelvic patients over the last decade who have been touched by this disease, we as a practice are inspired more than ever to never stop working to make a difference to help patients suffering with this invisible illness. It is 110% unacceptable that it takes 10 years or more to get diagnosed with endometriosis. We need to get women the help they need early on in order to prevent needless suffering.

Our goal this month, therefore, is to be a conduit of info to help create change. So to do our part, today we are sharing our #FactsAboutEndo campaign. We hope you join us to help to spread the word, empowering both patients and practitioners alike.

The (Surprising) Facts About Endometriosis

Surprising Fact #1: About 63% of general practitioners do not feel comfortable diagnosing and treating patients with endometriosis.

So why does it take 10+ years for the average woman to be diagnosed with endometriosis? As mentioned above, our work is definitely cut out for us. We desperately need to educate both patients and practitioners alike to help create change.

Surprising Fact #2: Common signs and symptoms of endometriosis can actually be deceiving.

When we saw this side-by-side comparison of classical taught “traditional” endometriosis symptoms against the reality of endometriosis symptoms, I had to share with you all.

This just goes to show how far we’re coming in identifying legitimate symptoms of this diagnosis, but also how our work is cut out for us! We have a lot of puzzle pieces/clues that need to be put together.

Traditional (Classically Taught) Symptoms:

• Dysmenorrhea (painful menstruation)

• Ovulatory Pain

• Dyspareunia (pain with sex)

• Infertility

Real (Actual) Symptoms:

• Constipation, dyschezia, painful bowel movements

• Diarrhea

• Bloating

• Infertility

• Nausea

• Vomiting

• Pain related or unrelated to menses

• Right and/or Left sided pelvic and abdominal pain

• Fatigue

• Painful intercourse usually with deep insertion or certain positions

• Urinary frequency, and/or urgency, and/or painful voiding

• Malaise (general feeling of discomfort)

• Lower back pain

• Heavy or irregular periods

Surprising Fact #3: 90% of women with endometriosis present with gastrointestinal symptoms.

What’s more: 83% present with bloating, and almost 8% of those women had endometriosis confined to the bowel. 

Surprising Fact #4: 50-84% of women who have endometriosis also have interstitial cystitis (I.C.)

Endometriosis and Interstitial Cystitis (I.C.) have been coined as “The Evil Twins”. Unfortunately, many women suffering with endometriosis also present with bladder pain syndrome/IC. In fact, up to 92% of women with endometriosis have IC in a referral practice.

What starts as a visceral or organ-based issue will almost ALWAYS result in a musculoskeletal issue. Why?

A few things happen:

First…the sacral plexus often gets bombarded with chronic noxious stimuli with endo and IC and destabilizes neuronal circuits. Silent nerves called afferents get turned on and increase the signal coming into the spinal cord and central nervous system. The pelvic floor and surrounding muscles will respond to this with a hypertonic state which further increases pain and tension on the pudendal nerve.

Next, due to the inflammatory nature of both of these diagnoses, the connective tissue around the bony pelvis also changes. This occurs through a reflex called the viscerosomatic reflex. The connective tissue over the abdomen, inner thighs, hips and gluteals becomes dysfunctional and often painful to touch and palpation. 
The good news is, this can be reversed! You can reverse this with specific manual therapy and pelvic floor physical therapy which should be a mainstay treatment for both of these diagnoses. Pelvic PT can greatly help with pain reduction with endometriosis and IC! Take home message: for effective treatment and medical management, find providers who understand both of these diagnoses!

(Source: The evil twins of chronic pelvic pain syndrome: endometriosis and Interstitial Cystitis. JSLS. 2002;4:311-314. Chung et al. Interstitial Cystitis and Endometriosis in Patients with Chronic Pain)

Surprising Fact #5: Endometriosis cells have been found in infants, suggesting that it is genetic.

Yep, fetal tissue! Let’s go back to basics with a comparison of what we do/don’t know about endometriosis.

What we DO know: Endometriosis has features of an inflammatory process that stimulates a wide range of immune and inflammatory cells. These immune cells secrete immune modulators which can stimulate the sensation of pain. We also know that endometriosis lesions contain high numbers of sensory and autonomic nerve fibers which provide a route for painful stimuli.

(Source: Laparoscopic Surgery for endometriosis(Review), Cochrane Collaboration, 2014).

What we DO NOT know: Even though the true cause of endometriosis remains unconfirmed, more recent studies suggest that women may be born with it (i.e. genetic). A 2012 study examined the pelvises of stillborn infant females and found endometriosis in just under 10%. This suggests that endometriosis might be present at birth, rather than acquired later in life.

(Source: Journal of Cellular Physiology)

Surprising Fact #6: Stage of the disease does not correlate with the pain.

This means that it is possible to have severe endometriosis (more advanced stage) with mild pain, or mild endometriosis (less advanced stage) with a severe amount of pain. Knowledge is power!

(Source: Dr. Iris Orbuch, MD)

Surprising Fact #7: There is HOPE for surgically confirmed endometriosis.

While this may be surprising to you or anyone feeling hopeless within their endometriosis diagnosis, our team has seen (and even experienced ourselves) successful pain management via pelvic floor physical therapy.

“I’m not 100% sure, but I think I’ve had endo since I was 15. My symptoms got worse about 10 years ago, and I eventually has an ovarian cyst removed about 2 years ago.

That’s when they found endo.

Before finding pelvic floor physical therapy, my life was painful and I had to schedule everything around my cycle. I felt my life come to a halt.

I tried every type of therapy and drug treatment for the pain - too long to even list. I want people to know that there is hope and there are people (even doctors) that DO understand what we are going through. Stay positive.”

Surprising Fact #8: There is HOPE for non-surgically confirmed endometriosis.

When your physical therapist has been through it, too- you know you’re going to get the compassionate care you need.

“To date, this fight has been one of the most challenging trials I have ever walked through. Multiple rounds of failed IVF and failed fertility treatment left me in one of the darkest valleys I have ever walked through. I ached to be a mama.

Miracles do occur. Out of this long trial came two of the most immeasurably bright blessings in my life—my children Kylie & Noah, who chose me as their mom through the miracle of adoption.

As hard as it was, my physical pain and emotional trauma have shaped my character and my understanding in a way that allows me to treat patients with genuine compassion and desire to help them acquire hope and healing for their own pelvic floor dysfunctions.”

We at Sarton Physical Therapy (pelvichealing.com) have been touched by endo personally, as you can see. Additionally, after treating thousands of pelvic patients over the last decade who have been touched by this disease, we as a practice are inspired more than ever to never stop working to make a difference to help patients suffering with this invisible illness.

It is 110% unacceptable that it takes 10 years or more to get diagnosed with endo. We need to get women the help they need early to prevent needless suffering.

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We want to encourage you to get evaluated by one of our outstanding physical therapists, and regain control of your life. Pelvic pain, pelvic floor dysfunction, back pain, tailbone pain—you name it—these conditions do not have to control your life. There is hope. Call us today to book an appointment for 1 of our 3 Southern California locations, or inquire about a virtual, online treatment session.

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