Endometriosis Action Plan

How to use this website

This website is designed to help you navigate learning all you can about the latest research on endometriosis, so that you can make informed decisions about your care. It takes some time, but it is worth doing the work!

1. Forget all you’ve been told about endometriosis and look at it with fresh eyes. Many outdated myths about endometriosis are still being perpetuated.
2. Start at the beginning and learn what endometriosis is.  Also, refer back as needed about more in depth information, such as how endometriosis behaves and how that can influence treatment options. Sometimes further questions remain and you might find more information in our Frequently Asked Questions. The search bar can be helpful as you explore.
3. Learn about symptoms. Some you may not have even correlated with endometriosis. Knowing why you have certain symptoms can help understand your disease, better understand treatment options, and be better able to cope with it.
4. Learn how other related conditions can mimic or overlap endometriosis symptoms. It’s not always just endometriosis causing problems.
5. Learn about how endometriosis is diagnosed (hint- surgery with biopsy confirmation) and how other diagnostic tests can help guide care.
6. Learn about your treatment options and latest research to help to make informed choices.
7. Research resources that can help you as you learn about endometriosis and navigate your care plan.
8. Feel connected with others and know you are not alone on this endometriosis journey.
9. Use this information when discussing options with your health care provider. You are your own best advocate!

Looking for something in particular? Using the search bar on the website will be your best option. Below are listed topics as of August 2020:

Nancy’s Nook Website Topics

1. What Is Endometriosis?
   1. Overview
   2. Origins
      • Origin Theories of Endometriosis
      • More Evidence Against Reflux Theory of Origin
      • Endometriosis Overview
   3. In depth on endo
      • Leptin and its role in endometriosis
      • Role of Estrogen Receptor-β in Endometriosis
      • Progesterone Resistance in Endometriosis
      • Weird places endometriosis has been found
      • Random Endometriosis Findings
      • Risks of Heart Disease, Perspective on Research
2. Symptoms
   1. Overview
   2. Additional symptoms
      • Additional Symptoms and Symptoms Based on Endometriosis Locations
   3. Pain
      • Introduction: Pain
   4. Pain with Endometriosis and what influences pain levels
      • Pain Associated with Minimal Endometriosis
      • Location of endometriosis lesions and where pain may be felt
      • Pelvic Floor Dysfunction links
      • Pain with Penetration
      • Brokengirl: The secret shame of chronic pelvic pain and the unseen consequences of our current care paradigm for endometriosis care
   5. Sexual Functioning
      • Pain with Penetration
      • Post coital bleeding
   6. Bowel/gastrointestinal
      • Bowel/GI endometriosis
   7. Fatigue and Inflammation
      • Inflammation with endometriosis
      • Inflammatory markers and endometriosis (CRP and CA-125)
      • Fatigue in Endometriosis
      • Study on Prostaglandin E2 and bacterial growth in endometriosis with response from Dr.Redwine
   8. Infertility
      • Fertility Issues
      • Infertility links
   9. Thoracic (diaphragm) 
      • Thoracic Endometriosis
      • Comments on Thoracic Endometriosis
   10. Ovaries
       • Ovaries and Endometriomas
   11. Urinary (bladder, ureters, and kidneys)
       • Urinary System (Bladder, Ureters, and Kidney)
   12. Other
       • Endometriosis Systemic Effects
       • Immune System
       • Adhesion Related Information – Articles, Links, and Resources
       • Endometriosis and Exercise
3. Diagnosis
   1. Overview
   2. Surgery
   3.  Ultrasound Use with Endometriosis
   4.  Magnetic Resonance Imaging (MRI’s) and endometriosis
   5.  Clinical diagnosis of endometriosis: a call to action- from AJOG
4. Treatment
   1. Overview
   2. Treatment
      • How is endometriosis treated?
      • The Standard of Care is Not Sufficient!
   3. Surgery
      • Why Surgery
      • Why excision is recommended
      • Endometriosis Appearance and Location: Impact on Surgical Success
      • The Cost Effectiveness of Surgical Excision of Endometriosis: an unpublished study
      • Should laser vaporization and electrocoagulation of endometriosis be banned
      • Robotic Surgery
      • Adhesion prevention
      • Pelvic Adhesions
      • What to Expect in the Weeks After Skilled Excision Surgery
      • Managing expectations pre-op and post op
   4. Medications
      • Pain Medications
      • Hormonal Medications
      • A Quick Guide to Pain Control
      • Medication to Prevent Recurrence
      • Effects of long term low estrogen states
   5. Physical Therapy
      • “Everyone should do Kegels” and other pelvic floor myths
      • Physical Therapy Resources
   6. Other Therapies
      • Pain Management
      • Mental Health
      • Alternative and Complementary Therapies
      • Diet and Nutrition
5. Related Conditions
   1. Overview
   2. Adenomyosis
   3.  Endometrial/Uterine Polyps
   4.  Interstitial Cystitis/Bladder Pain Syndrome
   5.  Pelvic Floor Dysfunction
   6.  Fibroids
   7.  Polycystic Ovarian Syndrome (PCOS)
   8.  Pudendal Neuralgia & Vulvodynia
   9.  Pelvic Congestion Syndrome
   10.  Occult Hernia
6. Resources
   1. Overview
   2. Resources
      • Choosing your surgeon
      • Managing the relationship with your current doctor
      • Personal Medical History Template
      • Things to pack for the Hospital
      • Why Patients Have a Role to Play in Changing the Status Quo of Endometriosis
      • Endometriosis The Patient Perspective, AAGL presentation
      • Informed Choice Evidence Report: APPG Womens Health from March 2017
      • UK Resources
      • Australia Resources
   3. Links, Videos, and Podcasts
      • Articles and Website Links
      • Podcasts and Videos
   4. Insurance and Finances
      • Tips for Dealing with Insurance
      • Insurance: Tricare
      • Lack of Endometriosis Surgery Reimbursement in the US links
      • Endometriosis affects absenteeism and presenteeism
   5. Infertility
      • Infertility links
   6. Teens
      • Teens and Endometriosis
   7. Pregnancy
      • Pregnancy and Endometriosis
   8. LGBTQIA+
      • LGBTQIA+ Resources
      • Transgender and Endometriosis Studies
7. Frequently Asked Questions
   1. Overview
   2. Is there a link between heart disease and endometriosis?
   3.  What effects can long term low estrogen cause?
   4.  Can endometriosis persist after hysterectomy/ovary removal
   5.  Is There Microscopic or Occult Endometriosis
   6.  Is endometriosis an autoimmune disease? Any association with autoimmune?
   7.  Does endometriosis increase my risk of cancer?
8. Patient Stories
   1. Overview
   2. Barriers to Care
   3.  Endometriosis: A Husband’s Perspective
   4.  Endometriosis is so much worse than a bad period
   5.  Impact of endometriosis on women’s lives: a qualitative study
   6.  Parenting is Hard, Even Harder with Endometriosis