Endometriosis is a complex condition that can be difficult to understand, especially since it can be difficult to find trustworthy information about it on the internet. We've compiled a list of ten things that we think everyone with endometriosis (or even if you just suspect you may have it) should know.
1. Endometriosis is common
Because it's difficult to diagnose, estimates range widely about how common endo actually is, but most experts believe as many as one in ten women may have endometriosis.
2. Diagnosis can be difficult
Despite how common endometriosis is, many patients still struggle with the condition for years before a diagnosis. For many women it's more than 10 years after their symptoms when they receive a diagnosis, and for younger women it can be even longer. One reason for the difficult diagnosis is simply lack of awareness among the general population as well as the medical community (see #7). Even after finding a doctor who suspects endometriosis, the diagnosis can only be confirmed with laprascopic surgery and analysis of an endometrial lesion or cyst. Ultrasound or MRI can rule out other conditions but cannot confirm endometriosis. Speaking of other conditions...
3. Endometriosis is one cause of chronic pelvic pain -- but not the only one
Recent studies have shown only about 1 in 4 (26.7%) of women with chronic pelvic pain are confirmed to have endometriosis after a diagnostic laparoscopic surgery. The chronic pelvic pain wasn't any worse for the women who were diagnosed with endometriosis. Other potential diagnoses for chronic pelvic pain include interstitial cystitis, vulvodynia, pudendal neuralgia, or pelvic floor muscle spasm.
4. It's not all about the lesions
One of the most complex things about endometriosis is the amount or progression of the condition isn't directly related to pain. Some women with minimal endometriosis experience severe pain, while women with substantial growth can have only minor symptoms.
However, researchers have found results that more directly correlate with pain. Myofascial trigger points, or knots within tight muscles, are a common cause of chronic pelvic pain. Treating these trigger points can reduce pain both directly at the site and throughout the entire pelvic/abdominal region.
More than 9 in 10 (94%) of women with endometriosis have trigger points in their abdomen that cause and amplify pain, and 61% have dysfunction in their pelvic floor muscles. These painful areas can be addressed with pelvic floor physical therapy, self-massage, and even by stretching and yoga.
5. Surgery can help, but it's probably not permanent
Surgery provides relief from pain and can improve fertility with endometriosis, but it isn't always a permanent solution. Between 21-37% of patients requested an additional surgery within two years. At five years, nearly half were experiencing pain severe enough for an additional surgery. In another study, after surgical treatment, the recurrence of endometriosis was estimated to be 21.5% at 2 years and 40% to 50% at 5 years
Some studies show that pain returns within a year for nearly half of women after and endometriosis surgery. Women with mild to moderate endometriosis growth were at higher likelihood for the pain to return and require additional interventions.
6. Painful intercourse is one of the most common symptoms
Studies have shown that more than 85% of women with endometriosis also experience painful intercourse. Fortunately, this symptom can be addressed independently of the endometriosis - pelvic floor physical therapy is proven to help resolve painful intercourse. Other common symptoms include dysmenorrhoea (painful periods), abdominal or pelvic pain, heavy menstrual bleeding, infertility, irritable bowel syndrome, and difficulty defecating or urinating (including constipation or feelings of incomplete voiding).
7. Finding a specialist is key!
In one survey of general physicians, 63% reported they didn't feel comfortable diagnosing or treating endometriosis among their patients. Half of physicians couldn't list three primary symptoms of endometriosis, but only 24% would immediately refer patients to a specialist. Endometriosis, like other pelvic pain conditions, is complex, and it is worthwhile to find a physician, physical therapist, or other practitioner that specializes in the field.
This is especially important when considering surgery as an option. It is important to find a specialist in minimally invasive laparoscopic excision surgery -- the gold standard of surgical treatment of endometriosis. To begin with, most gynecologists already have much less surgery-specific training than other surgeons (general, orthopedic, thoracic, colorectal, neurological, etc), so it is vital to find a surgeon with the expertise and experience to perform the surgery effectively.
8. Treatment of endometriosis is based on symptom relief -- it is not a cure
Endometriosis has no known cause and therefore no cure. Treatment revolves around addressing the symptoms. First line treatment for endometriosis is often hormone therapy to reduce the hormonal cycle causing bleeding and inflammation from endometriosis lesions. Hormone therapy can reduce painful symptoms associated with endometriosis but is not proven to improve fertility once the therapy is discontinued. Surgical intervention can remove the lesions but still does not address the underlying cause of why the lesions develop in the first place. With this in mind, considering all options of pain relief is key.
9. Alternative treatments can reduce symptoms
There are a variety of treatments that can provide relief from the pain and symptoms of endometriosis. Controlled clinical trials have shown that acupuncture can significantly reduce endometriosis pain by up to 62%.
Physical therapy can also improve many common symptoms of endometriosis, including pelvic pain, painful intercourse, constipation, and low back pain. In one study, weekly sessions of physical therapy and psychological interventions improved function, vitality and well-being while reducing stress levels.
Dietary changes may also contribute to overall decreases in inflammation and pain responses. One study showed that 75% of women with endometriosis who followed a gluten-free diet for 12 months experienced a decrease in symptoms.
10. Treatment of endometriosis should be multidisciplinary
Endometriosis is a complex condition, and a multidisciplinary approach yields the best results for patients. For comprehensive treatment, complement traditional treatments like surgery and hormone therapy with physical therapy, diet, acupuncture, yoga, or other treatment options.
Additional Resources
Dr. Nicole Cozean is the founder of PelvicSanity physical therapy, Orange County's premier pelvic floor physical therapy clinic. One of only 270 PTs to be board-certified in the pelvic floor, and the first PT to serve on the ICA Board of Directors, Nicole is the author of the acclaimed and best-selling book The Interstitial Cystitis Solution (2016). She is an adjunct professor at her alma mater, Chapman University. The PelvicSanity blog focuses on presenting practical, positive information to help patients beyond the walls of Nicole's clinic.