Do you have Endo?

Do You Have Endo?

What’s the Big Deal? It’s Just “Killer Cramps,” Right?

Wrong. This mistaken assumption diminishes and invalidates the suffering of every individual with the disease and can lead to feelings of isolation. Endometriosis isn’t just ‘bad periods.’ Someone can have endometriosis without a uterus or routine menstruation.

So – What IS Normal?? Minor cramping during menses, often treated with over the counter remedies, is not uncommon. Inflammatory hormones – particularly prostaglandins – are linked to the mild cramping and discomfort of routine periods. This is called “dysmenorrhea”.  Dysmenorrhea is not the same as endometriosis. Endometriosis is not merely a ‘period’ disease.

The following are NOT normal:

  • Chronic pelvic pain
  • Pelvic pain that gets worse after sex or a pelvic exam
  • Abdominopelvic pain apart from menses
  • Chronically heavy or long periods
  • Bowel or urinary disorders, often associated with periods
  • Painful sexual activity, particularly with penetration
  • Significant lower back pain with menses
  • Allergies, migraines or fatigue that tends to worsen around menses
  • Crippling menstrual pain
  • Catamenial pneumothorax (with lung endometriosis)

Endometriosis is characterized by the presence of endometrial-like tissue located outside the womb.  These fragments are different structurally, and behave differently, from the normal endometrium which is shed during a period. With endometriosis, the disease commonly occurs on the pelvic structures (and sometimes beyond), causing severe pain, bowel, bladder or other organ dysfunction, inflammation, scarring and adhesions, and in some cases, infertility. Endometriosis represents a significant clinical challenge commonly associated with reduced quality of life in those affected.  Symptoms are frequently wide-ranging and often start early in life, but may be underappreciated by medical and lay communities alike.

Often called a “disease of theories,” the definitive cause(s) of endometriosis remain under debate, though demonstrated association with a number of hereditary, environmental, epigenetic and menstrual characteristics exist.  NO SINGLE RESEARCHER HAS FOUND “THE” ANSWER.  The chronic, inflammatory reaction, infertility and pain associated with endometriosis may also correspond to a variety of co-morbid conditions ranging from autoimmune disease to food and environmental allergies and intolerances.

Theories include:

Retrograde menstruation – Sampson’s century-old theory of abnormal backflow; this does theory cannot explain endometriosis in all cases and does not account for the histological differences in the lesions vs. native endometrium

Immunologic dysfunction – there may be an immunological component to the development of the disease for some

Stem Cells – have been demonstrated to populate lesions, even in absence of menstruation

Genetics – a 7-10 fold risk exists in those whose mother or relative has disease

Environmental Toxins – may cause cell changes which allow for implantation and errant immune response in some individuals

These are just a few of some of the more common theories often referenced in the scientific literature. NO theory explains all endometriosis in all patients, particularly in rare cis males with endometriosis, non-menstruators, and those with extrapelvic forms of the disease.

What does Endometriosis feel like?

Symptoms vary from person to person, but classic signs include severe dysmenorrhea, painful sex, chronic pelvic pain, Middleschmertz (painful ovulation), bowel or bladder associated pain or symptoms, infertility and often chronic fatigue, collapsed lung in thoracic endometriosis, and more. Endometriosis can cause pain in menstruators and non-menstruators alike. Those with endometriosis also frequently suffer from certain comorbidities.

People with endometriosis often report their pain as “throbbing” and experience dyschezia when compared with those with an apparently “normal” pelvis, and specific menstrual symptoms have been reported to occur more frequently in those with the disease as compared with a control group.  Endometriosis is more commonly found on the left side, with at least one study indicating 56% of women having left-sided disease versus 50% having right-sided disease [Ballard, Lane, Hudelist, Banerjee, Wright. Can specific pain symptoms help in the diagnosis of endometriosis? A cohort study of women with chronic pelvic pain. Fertil Steril Volume 94, Issue 1, Pages 20-27, June 2010]. Individuals may also report hematochezia (rectal bleeding) in association with menses when endometriosis involves the rectosigmoid colon.  Similarly, flank pain and/or hematuria may be present if the bladder or ureters are involved. Sexually active women may report dyspareunia, which may be due to scarring of the uterosacral ligaments, nodularity of the rectovaginal septum, cul-de-sac obliteration, and/or uterine retroversion, all of which may also lead to chronic backache. These symptoms are often exaggerated during menses. Women with deep infiltration of the uterosacral ligaments were shown to have the most severe impairment of sexual function [Ferrero, Esposito, Abbamonte, Anserini, Remorgida, Ragni. Quality of sex life in women with endometriosis and deep dyspareunia. Fertil Steril. Mar 2005;83(3):573-9]. Partial or complete bowel obstruction may occur due to adhesion formation or a circumferential endometriosis lesion. Ureteral obstruction and hydronephrosis can also result from endometrial implants on the ureters or mass effect from an endometriomas [Kapoor, Alderman et al. Endometriosis Treatment & Management. http://emedicine.medscape.com/article/271899-overview]. Depending on the site, endometriosis may present with secondary symptoms including bowel obstruction, melena, hematuria, dysuria, dyspnea and swelling in the soft tissues [Sonavane SK, Kantawala KP, Menias CO. Beyond the boundaries-endometriosis: typical and atypical locations. Curr Probl Diagn Radiol. 2011 Nov-Dec;40(6):219-32]. In cases of pleural (lung/diaphragmatic) endometriosis, catamenial pneumothorax – lung collapse in association with menses – may occur.

There is no known prevention for the disease. Likewise, no absolute cure has been universally defined. Even in the hands of the best surgical excisionists in the world, there can  be recurrence or persistence of the disease.

TREATMENTS:

Removal of the disease (surgical excision) can confer the best surgical outcomes, but a multidisciplinary approach is best suited for many who struggle with endometriosis.

Medical Suppression – treats only symptoms, not disease, many have significant side effects

Physical Therapy – non-invasive, very helpful way of managing symptoms

Alternative Therapies – non-invasive way to help with pain for some; may include acupuncture, aromatherapy, myofascial release therapy, exercise, herbal therapy, etc.

Diet/Nutrition – may contribute to symptom reduction (though not a treatment for the disease itself)

Pain Management – coping mechanisms for chronic pain can be offered in a professional pain management setting

Hysterectomy – not a cure, but may have a place in the treatment spectrum for some with endometriosis and adenomyosis

Temporary Medical Suppressives include:

GnRH agonists/antagonists, i.e. Orilissa®, Lupron®, Synarel®, Zoladex®

Synthetic androgens i.e. Danazol®

Oral contraceptives, i.e. Alesse® or Lo-Ovral®,  Seasonale®, Visanne®

Injectible contraceptives, i.e. Depo-Provera®

Aromatase Inhibitors i.e. Femara®

No supplement has ever been proven as an endometriosis ‘cure’. Certain supplements may help some, however. See http://www.thenutritionista.ca for expert information on supplements, vitamins and nutrition related to endometriosis.

General Inquiries:

Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444

E-mail: askerc@endocenter.org

Toll Free: (800) 239-7280

Fax: (561) 274-0931

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