Endometriosis: A systemic disease

Endometriosis is a progressive chronic autoimmune inflammatory disease that affect 1 in 10 women of reproductive age, which can sometimes start at 9-11 years old. It is an extremely debilitating disease which is often misdiagnosed and under diagnosed. There are two types invisible/microscopic disease (Stage 0) and macroscopic disease (endometriomas/pulmonary with catamenial pneumothorax). It mainly affects the reproductive system with severe menstrual cramps, however, most women have some aspect of systemic endometriosis since it also simultaneously affects the psychological system with PMS/PMDD, respiratory system with restrictive lung disease/pneumothorax, the neurological system with migraines, the musculoskeletal system with diffuse myalgia, endocrine system with severe fatigue, and gastrointestinal (GI) system with constipation/diarrhea and nausea/vomiting.

Rampant misdiagnosis

Since endometriosis is a systemic disease it is often misdiagnosed, for example as irritable bowel syndrome (IBS), chronic medication induced migraine, and fibromyalgia. I call the disease the great Chameleon. It is important to note that women understand that endometriosis is initially a clinical diagnosis, there may not be any macroscopic findings (Stage 0), and laparoscopy may be initially negative for macroscopic disease, this does not negate the fact that there are endometrial ectopic foci that are invisible.

Diagnosis and Treatment

As previously mentioned endometriosis is very difficult to diagnose especially for Stage 0/invisible systemic disease. There is a blood test that was developed, but it is only 90% sensitive. Thus, there is a 10% chance that the patient is positive for disease but the test says that the patient is negative. Otherwise, it is a clinical diagnosis until there is macroscopic disease seen on laparoscopy, which can take up to 20-25 years to manifest.

Treatment is mainly hormonal with utilization of birth control therapy, such as oral contraceptives, Mirena IUD, Climara Pro patch or combinations of the aforementioned hormonal therapy. GnRH agonist/antagonists such as Leupron or Orilissa are also used. The side effects of these therapies can be devastating, but Orilissa works really well if the side effects can be tolerated for at least 6 months. Surgical options include a hysterectomy or hysterectomy with ovary removal. The ovaries when removed prior to menopause can be very detrimental to women’s health even with hormone replacement therapy.

Traditional Chinese Medicine with locoregional treatment such as acupuncture with moxibustion, reflexology and cupping, is also extremely helpful. Energy medicine techniques such as Krieger-Kunz Therapeutic Touch and Tai Chi are also invaluable tools in the armamentarium for treatment of endometriosis. Herbs such as Pau D’ Arco, Astralagus, Red Panax Ginseng, Gingko Biloba, Nopal, Graviola and Reishi Mushroom are also critical to controlling systemic endometriosis. Memorial Sloan-Kettering’s complimentary medicine herbal website is an excellent source for informational education about these herbs relative to academic research.

Adjunctively, counseling is very highly recommended secondary to the debilitating effects of excruciating pain, symptoms being disregarded, and being told that symptoms are psychological, can be very damaging to a women’s global health and daily routine care.

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