March is endometriosis awareness month. The HVPT team had the privilege of kicking off the month at the first ever Endometriosis Summit Patient and Practitioner meeting in Hoboken, NJ on March 3rd. The meeting brought together national and even some international leaders in medical treatment of endometriosis, advocacy, physical therapy management, and individuals living with endometriosis.
Videos from the summit live stream can be found on the Lumenis Gynecology facebook page. Link here:
We had the privilege of spending a full day getting information overload on all things endometriosis, but here I’ll just be highlighting a few key takeaways for individuals living with endometriosis. What is endometriosis?
Endometriosis is “the most common disease you’ve probably never heard of” -Sharon Cohn. Endometriosis occurs when tissue similar to the lining of the uterus begins to grow in other parts of the body. The name is a bit of a misnomer and it’s a common myth that it is the lining of the uterus, the endometrium, growing in the abdominal cavity. A few common sites of these endometrial-like growths include the ovaries,the rectum, and the bladder. These growths are responsible for debilitating pain and menstrual irregularities.
Early detection is key
An estimated one in ten women are living with endometriosis. It takes on average of 11 years to receive the diagnosis. During this time, inflammation from the growths cause pain, scaring, and disability just to name a few. Endometriosis presentation varies vastly person to person. The many skilled practitioners present emphasized the importance of early detection of endometriosis..The pain from endometriosis is absolutely real, and if you find a clinician who does not acknowledge that pain, it is time to move on. Endometriosis remains mysterious to the majority of the medical world. Find a clinician who specializes in endometriosis.The current gold standard for official diagnoses as well as treatment for endometriosis is excision surgery where the surgeon removes the growths
Approximately 70% of teenagers with painful periods have endometriosis. Painful periods have been normalized, and they are indeed NOT normal. The Endo What? Organization has started the school nurse initiative to help educate school nurses and improve early detection and treatment of the disease.
There is so much we don’t know
There is still no known cause for endometriosis. Some evidence links genetic and environmental factors to the disease, but we really don’t know why someone has endometriosis. Unfortunately, there is no cure for endometriosis, but the disease symptoms require complex medical management that can include excision surgery, medical management, diet, physical therapy, and psychological support.
It takes a village
The HVPT team at the endometriosis summit in Hoboken, NJ
The endometriosis summit was an amazing event because it brought together doctors from all different specialties, physical therapists, psychologists, researchers, nurses, and most importantly patients. Effective treatment requires a team approach. A variety of medical specialties were present at the summit including endometriosis excision specialists, urologists,GI doctors, physiatrists, pain specialists, and fertility experts. These doctors work closely not only with each other but with physical therapists, nutritionists, and psychological support. Because endometriosis affects everyone so differently, it is absolutely crucial that the team is communicating and sees the big picture rather than each small little piece of the body.
What can a physical therapist do about endometriosis?
Physical therapy cannot reverse the endometriosis disease process, but physical therapy can significantly improve quality of life for individuals living with endometriosis. To keep it simple, painful areas tend to make surrounding muscles tight. In addition, the growths present in endometriosis and the scars from endometriosis removal cause restrictions in the movement of connective tissue which can be quite painful and affect bowel, bladder, and sexual function as well. Pelvic floor physical therapists are equipped with the skills to treat these muscle and connective tissue restrictions in the pelvis and surrounding regions.
Endometriosis is a very serious and debilitating disease. The internet is full of a ton of information both good and bad.
Where can I get more information?
- Nancy’s Nook- this facebook group is purely an educational resource for individuals who want to learn more about endometriosis
- The Endometriosis Summit Panelist Blog-https://theendometriosissummit.com/endometriosis-summit-blog
- The Endometriosis Association- https://endometriosisassn.org/
- Endo What- https://www.endowhat.com/
Visit our website www.hudsonvalleypt.com, or give us a call 914-831-7575 to learn more about our pelvic health services and how we can assist in management of endometriosis.