What to Know About Endometriosis
Endometriosis (also referred to as endo) is a confusing condition, with frustrating diagnostics and treatment options. Let this article be a guide to potential medical and integrated options to support your healing journey.
What's Endometriosis?
Endometrium is the lining of the uterus that builds up monthly to allow for the implantation of the fertilized egg in the womb. If there's no egg, there's no need for this cushy lining, and the body sheds the tissue (also known as menstruation). Your period consists of blood, vaginal secretions, and these endometrial cells.
If this mixture flows up, rather than down and out, it pushes up into the fallopian tubes and into the pelvis. Endometrial cells will then attach to the walls of the pelvis, outside the uterus, and any other organ in the pelvis. Though not where they are meant to be, they continue to attempt to do their jobs, collect blood to form lining and then shed without a fertilized egg.
The American College of Obstetricians and Gynecologists (ACOG) defines endometriosis as an overgrowth of endometrial tissue that grows outside of the uterus.
This lining and thickening wall outside of the uterus leads to inflammation, scarring, and lesions. The tissue can grow onto other organs, restrict blood flow and impact fertility. Endometriosis can cause severe pain - or demonstrate no symptoms at all.
Commonly found on the ovaries, fallopian tubes, bladder, rectum, abdominal cavity (peritoneum), and the area behind the uterus (the cul-de-sac). It’s important to know that endometrial tissue can be found outside of reproductive organs such as the respiratory diaphragm and gastrointestinal tissue.
Common Symptoms of Endo
Chronic Pelvic Pain
Constipation
Heavy Periods
Painful Sex
Infertility
Sharp lower abdominal pain
Painful urination
Severe cramping
Diagnosis & Treatment Options
Even though over 33 million people in the United States struggle with endometriosis, research funding for this condition is horrifyingly minimal.
Endometriosis has been described by those who experience it as lonely, confusing, and frustrating because it is invisible to the naked eye. Many go on a long journey where their symptoms are misunderstood or disregarded by medical professionals, teachers, family members, and partners. The average person sees up to 7-10 specialists before a diagnosis.
Diagnosing endometriosis is tricky, partially because it can mimic other diagnoses, and partially because about 20% of people with endometriosis are asymptomatic. If symptomatic, it can be suspected through the list of symptoms. The only true way to know if someone has endometriosis is through a laparoscopy, which is a minimally invasive surgery that involves small cuts in the abdomen and a long thin tube with a camera and a light attached. Tissue samples can then be biopsied and confirmed.
Medical treatment options are hormonal birth control, medications, and surgery.
Medications and hormonal birth control may lessen symptoms, but are also known to have impactful side effects. It’s important to discuss all medication options with a medical provider.
Surgical Treatment is removing the endometrial tissue through either ablation, which is to cut or burn out the tissue, or excision laparoscopy, which is to cut out the endometrial tissue. The good news is that many report decreased symptoms following surgery in the short term. The bad news is that 40-80% of people who have surgery experience their symptoms again within 2 years.
There are two growing camps for treating endometriosis. The gold standard has been through excision surgery. The other perspective is that surgery may help, but not be the only answer (and also not be the cure-all as it was previously described to patients).
Small Steps are Brave Ones
While gathering your team and considering a medical plan can seem overwhelming and expensive, a few things you can do on your own are…
Assessing your relationship with alcohol and other inflammatory foods
Considering your life stressors and stress management
Making sleep and sleep hygiene a non-negotiable
Eating balanced meals
Partaking in some form of movement (one that brings you joy) at least 4x/week
Research on Resilience & Endometriosis
New research studies looked at people with chronic pelvic pain/endometriosis perceptions/ratings of pain and their level of resilience. Results showed that women with endometriosis who scored higher levels of resilience experienced less abdominal pain and pelvic pain that those who scored with lower resilience.
What does this mean?
It means building resiliency and self efficacy are important tools! This is actually a skillset that can be honed in on and developed through tapping into the nervous system, which is also related to how pain is processed in the brain.
Building resiliency can change the way we process and perceive pain - which in some sense turns your weapons into wands.
How Pelvic Floor Therapy Can Help with the Physical and Beyond
Uterine and pelvic pain from endometriosis lesions can cause the surrounding tissue and muscles to protectively guard and contract. When this occurs over time it causes muscle tension and pain in the abdomen, pelvis, hips, and spine.
An occupational or physical therapist trained in pelvic health helps to improve the flexibility, strength, and coordination of your muscles, helping to mitigate symptoms.
Within the pelvis, they can address tension in the pelvic floor, optimal bowel/bladder habits, and support sexual function. You may learn with them how your body’s autonomic protective responses may be impacting symptoms and how to optimally support your body.
While pelvic floor therapy is not a cure to endometriosis, manual techniques, exercises, and breathing strategies can improve flood flow, work on scar tissue massage, and free up tissues that have been restricted by endometrial adhesions.
Pelvic floor therapy can be helpful to prepare and recover from laproscopic surgery.
Going in for Endo surgery? Here’s how to prep:
We recommend preparing ahead of time because going to the store following surgery may be difficult.
Heating pad/cooling pads
Lights foods (bone broth, soups, Jello, bananas, smoothies, etc)
Fluids - consider electrolyte tablets or beverages during healing, especially if appetite is low
Comfortable, loose fitting clothes
Consider buying a size larger for pants and underwear to not have any restrictive waistbands
Warm clean sheets and blankets
Meal prep in advance
Small pillow for car rides (you won’t want your belly to touch the seat belt)
Sound machine, eye mask, ear plugs, and anything else to help you sleep
Setting realistic expectations - you may experience painful periods or menstrual cycles that are different. This should gradually improve in the next 3-6 months
Conclusion:
Endometriosis continues to require more research to better understand the medical and lifestyle considerations to improve symptoms. With research pointing to the impact of resiliency, standard medical approaches alone may not work with everyone.
Using integrated therapies, such as pelvic floor therapy, can improve pain, decrease symptoms, and help build invisible tools such as resilience and self efficacy- which is why the village of providers (dieticians, acupuncture, mental health, and pelvic health) can make such a difference.
For those who need to hear this - there is help. Below are just a few resources you can tap into as well as the studies references for this post.
Resources
Facebook Group: Nancy Nook’s Endometriosis Education
Book: Beating Endo by Amy Stein & Dr. Iris Kerin Orbuch
Book: Outsmarting Endo by Jessica Drummond
Film: Below the Belt - can stream through PBS
Instagram: The Endo Space, EndometriosisSummit,