Endo What?

If you’re like most people, you’ve probably never heard of endometriosis before and may not even know how it is pronounced. Even though it affects 1 in 10 women (almost as common as breast cancer and 8 times more common than ovarian cancer[1]) the general public still has very little awareness about the disease.

What is Endometriosis?

The lining of the uterus is called endometrium. This tissue responds to the hormones of a woman’s cycle, first thickening to prepare for a possible pregnancy, then thins and sheds by bleeding if pregnancy does not occur. Endometriosis is characterized by the presence of endometrium-like[2] tissue located outside of the uterus. These lesions are found on the pelvic structures (and sometimes beyond), causing severe pain, bowel, bladder and other organ dysfunction, inflammation, scarring and adhesions, ovarian cysts and in some cases, infertility. Endometriosis presents a significant clinical challenge. Symptoms are wide-ranging and often start early in life but may be underappreciated by the medical community.

Isn’t it just “Killer Cramps”?

No. Endometriosis is more than cramps. Minor cramping during menses, which can often be treated with over the counter remedies, is called dysmenorrhea and is not the same as endometriosis. The following are common symptoms[3] of endometriosis and are NOT normal:

  • Pelvic pain that gets worse after sex or a pelvic exam
  • Painful sexual activity, particularly with penetration
  • Significant lower back pain with menses
  • Crippling menstrual pain
  • Bowel or urinary pain, dysfunction or disorders often time associated with periods
  • Chronically heavy or long periods
  • Allergies, migraines or fatigue that tends to worsen around menses
  • Bloating, “Endo Belly”

How is Endometriosis Diagnosed?

Currently, the only way to verify the presence of endo is surgically; by pathology confirmation of biopsied specimens obtained during a laparoscopy. Currently, there are no tests for endometriosis. Imaging tests such as ultrasounds, CTs and MRIs along with pelvic and rectovaginal exams can indicate suspicion of endometriosis but cannot confirm it.

Endometriosis can be found in many locations throughout the pelvic cavity and sometimes even beyond including:

  • Ovaries
  • Fallopian tubes
  • Uterosacral ligaments (supporting the uterus)
  • Posterior cul-de-sac (the space between the uterus and rectum)
  • Bladder
  • Outer surface of the uterus
  • Lining of the pelvic cavity
  • Intestines
  • Appendix
  • Lungs & diaphragm

The disease can be categorized into four different stages: Stage I – minimal, Stage II – mild, Stage III – moderate, Stage IV – severe. The stage classification may describe the extent of the disease, but has a very poor correlation to a patient’s actual symptoms. Someone with stage II disease may experience more pain than someone with stage IV disease.

What Causes Endometriosis?

While the definitive cause of endometriosis is still being researched, there are several theories that have been adopted. The most widely accepted theory is that of retrograde menstruation; the backflow of blood from the uterus into the pelvic cavity. However, every woman with a menstrual cycle experiences retrograde menstruation so this theory does not explain why some women have endometriosis and others do not. Another accepted theory is an immunological dysfunction, where a dysfunctional immune system allows for implantation of endometrial-like tissue. Another accepted theory is that genetics play a role. Girls are 7-10 times more likely to have endometriosis if their mother or relative also has the disease[4].

What treatment/therapies are available?

  • Laparoscopic Excision – the “Gold Standard”

The gold standard for treatment is minimally invasive laparoscopic excision surgery. Where the endometriosis lesions are excised, cut out and removed, not ablated by laser vaporization. A highly skilled surgeon that has trained as an endometriosis specialist is crucial to getting proper treatment. 

The following therapies do not treat endometriosis but serve more to alleviate symptoms caused by the condition:

  • Medical suppression (ex. oral contraceptives, IUDs, and Gonadotropin-releasing hormone)
  • Physical Therapy (including pelvic floor physical therapy)
  • Pain management
  • Diet/nutrition
  • Alternatives (ie. acupuncture, aromatherapy, exercise, herbal therapy)

What if I think I have endometriosis?

The Endometriosis Research Center developed an 11-question self-test to help identify suspicion of endometriosis. Consider if any the of these common symptoms apply to you:

  1. Do you experience so much pain during or around your period that you find yourself unable to work, attend school or social functions, or go about your normal routine?
  2. Do you have any relatives diagnosed with endometriosis?
  3. Do you find yourself with painful abdominal bloating, swelling or tenderness at any time in your cycle? 
  4. Do you have a history of painful ovarian endometriomas (“chocolate cysts”)?
  5. Do you have a history of miscarriage, infertility or ectopic pregnancy? 
  6. Do you experience gastrointestinal symptoms during your cycles, such as nausea or vomiting and/or painful abdominal cramping accompanied by diarrhea and/or constipation?
  7. Do you have a history of fatigue or feeling “sick and tired” all the time?
  8. Do you have a history of allergies, which tend to worsen around your periods?
  9. If sexually active, do you experience pain during sexual activity? 
  10. Do you suffer from autoimmune diseases or other conditions e.g. thyroid disease, rheumatoid arthritis, lupus, fibromyalgia, multiple sclerosis, chronic migraines?
  11. Have you ever undergone pelvic surgery like a laparoscopy, in which endometriosis was suspected but not definitively diagnosed?

If you answered “yes” to three or more of these questions you could have endometriosis. It is best to consult with an endometriosis specialist about your symptoms and your answers to these questions. Take a look at our recommended list of physicians snd review the information here to prepare for your appointment.

https://www.endofound.org/preparing-to-see-a-doctor

***This website is in no way a replacement for medical care. The content on this site is informational and should not be considered medical advice. Please seek a licensed health care provider for medical issues.***

References

[1] https://www.cancer.org/cancer/breast-cancer/about/how-common-is-breast-cancer.html and https://www.cancer.org/cancer/ovarian-cancer/about/key-statistics.html

[2] https://pubs.acs.org/doi/abs/10.1021/acs.jproteome.5b00965

[3] https://www.drseckin.com/endometriosis

[4] https://www.endocenter.org/do-you-have-endo/