Wow, this episode is a doozy!
We think EVERYONE should listen to this episode, whether you are a medical /fitness professional or general public....this information is so important.
After 23 years of misdiagnosis, Sallie embraced her struggles with endometriosis to forge a new pathway for all who suffer from the disease and its associated conditions. She is a practicing pelvic physical therapist specialising in endometriosis and subsequently occult hernia who has gone on to found The Endometriosis Summit - the largest patient and practitioner gathering for endometriosis in the United States with Dr Andrea Vidali and is a driving force behind iCareBetter, a new endometriosis education portal and video vetting system for endometriosis excisionists in North and South America. Sallie is currently weathering the USA's Covid life with her two poodles, and parents while doing telehealth to the endometriosis world.
In this interview we discuss:
- what endometriosis is and how common it is (one in ten women!!).
- how those lesions make their own oestrogen (and progesterone) and nerve/blood supply.
- why hysterectomies don't cure endometriosis
- the history of diagnosis of endometriosis and some of the theories that have existed over time
- how in endometriosis, the tissue can extend as far as the lungs and pericardium. The only organ in the body that hasn't been shown to have endo is the spleen!
- how birth control can modulate the period but not the disease
- how you can get endo in the skin - typically iatrogenic such as being dragged by a surgical scalpel
- how diagnosis is made. Typically imaging is not helpful. Gold standard = laparoscopy.
- Staging of the disease is not well correlated with pain experienced
- the common symptoms associated with endo - including cramps, painful periods, IBS-like symptoms, pain with deep penetration, back pain, leg pain, tailbone pain, rib pain, leaking for no reason, increased urinary frequency, issues with fertility, nose bleeds with periods, neck pain and reflux, symptoms at ovulation (bowel problems worse with periods and ovulation)
- how girls/women are often taught to be warriors and put up with pain. The message is often that period pain is normal and needs to be put up with.
- some of the changes that are happening around the world to educate high school girls about periods (see resources below)
- that symptoms may be there early in life such as inflammatory issues in the gut, but not diagnosed until older age when having fertility issues.
- how early menstruation is associated with higher risk of endometriosis
- teens don't always need to rush in for surgery. Birth control can modulate symptoms in some people. It does not treat the disease.
- some of the conversations to be had around providing contraceptive pills in children.
- how endometriosis itself can impact ovarian reserve
- the receptor site sensitivity for progesterone can be down-regulated in some women with endo. Some docs will throw more progesterone into the system, which may not do anything. So different pills need to be considered
- how the type of surgery is important - ablation just burns off the top, you need excision surgery to remove the roots
- the current limitations in the medical system - in terms of education of doctors and gynaecologists.
- how health and fitness professionals can help women with endo - by being aware of the different symptoms that can be related to endo and screen further. How exercise can help improve mobility around the scar. Try and meet your clients where they are at and tap into the activities that they enjoy.
- some of the questions that you can ask if you suspect a client has endometriosis
- how every woman deserves treatment and some of the gaslighting that still goes on within the medical system
- how as physiotherapists we can support our clients with endometriosis - through connecting with our clients and teaching them that they will need to advocate for themselves. Educate re: central nervous system sensitisation and teach the client tips to help them regulate this such as meditation/ breathing exercises and some cardiovascular exercise.
- the Endometriosis Summit - usually every March. This year was over 700 people! In October there will be an Endometriosis Reproductive Immunology conference online.
- how iCareBetter is putting together a list of excisionists and doing blinded studies on the surgeons