What is Endometriosis?

Endometriosis is a condition where cells that are similar to the lining of the uterus are found outside of the uterus.  By definition, endometriosis occurs outside of the uterus.  These cells grow on the lining of the pelvic and abdominal areas, on body organs such as the intestine, appendix, bladder, diaphragm and even the lung on occasion.  In fact, endometriosis has been found just about anywhere in the body. 

Endometriosis is a strange disease.  It can be painful or silent.  It can have symptoms such as pain with the menstrual period or it can have symptoms that are seemingly unrelated.  Many patients with endometriosis struggle with pain.  Many have resulting infertility associated with endometriosis.

Warning signs and risk factors for endometriosis include a family history of endometriosis, the use of birth control pills or hormones for controlling period pain, and missing school during the teen years due to period pain.

Endometriosis symptoms include:

  • Pelvic pain during period – often starting a few days before.  Patients often develop pain throughout the menstrual cycle with continued disease
  • Constipation and/or Diarrhea – many patients with endometriosis are diagnosed with Irritable Bowel Syndrome (IBS)
  • Bloating
  • Painful intercourse usually with deep insertion or certain positions
  • Infertility
  • Painful bowel movements
  • Blood in the stool during menses
  • Urinary frequency
  • Fatigue
  • Lower back pain

The symptoms are often a clue to location of endometriosis.

Common myths about endometriosis

As stated above, endometriosis, by definition, occurs outside of the uterus.  Many doctors advocate hysterectomy (removal of the uterus) and possibly the ovaries as definitive treatment for endometriosis.  To be clear, there is not a single study in the medical literature that supports that statement.  Removing the uterus and ovaries can help with some aspects of pelvic pain, but they DO NOT make endometriosis go away.  In fact some forms of endometriosis can continue to produce their own hormone support.

There is not a single hormone that has ever been shown to destroy endometriosis cells.  This includes birth control pills, progesterone medicines, and GnRH modulating medicines.  All of these medicines have only been studied for their effect on endometriosis related pain and symptoms.

According to the ACOG practice bulletin #114 on management of endometriosis, there are no data to support the claim that hormones prevent progression of disease.  Hormones are meant to palliate (control) symptoms without necessarily treating the underlying disease.

This is common guidance that patients receive from their providers.  Even the most advanced and destructive endometriosis that causes scarring, bowel invasion, bladder invasion, diaphragm and lung invasion, can usually be treated surgically with a low complication rate if the surgery is done by a skilled team.  “ Too risky” is for each patient to determine individually.

Many of the hormones including birth control pills, progesterone medicines, progesterone IUDs, Leuprolide, and Elagolix have been tested head to head and found to be equivalent in studies.  Some patients will respond differently to some hormones and not others, but it is difficult to predict.  Years and years of hormone trials often contributes to the 8-10 years of delayed diagnosis that is common in patients with endometriosis.

We have been aware of the symptoms of endometriosis, painful period and pelvic pain, for multiple decades.  One of the first common treatments is a trial of hormone therapy.  Even if hormones help with symptoms, there still is a risk of progression of the disease.  Simply calling the symptoms “Endometriosis” then continuing the same failed treatment protocol does not change the patient experience.

This is false.  A study by my mentor, CY LIU, and a colleague, Todd Jenkins, proved this to be false.  Patients choosing to focus on symptom control with hormones, must be aware of the possibility of disease progression that may become destructive and more difficult to treat.