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 is, in fact, “a wound so profound and primal in nature it has the potential for pervading and negatively impacting every aspect of an individual’s life – and the life of those who care for that person; from the ability to go about a normal routine, to intimate engagement in an enjoyable sex life, to the ability to control reproductive choices.” (CEC)
So – What IS Normal?? Minor cramping during menses, often treated with over the counter remedies. Each month, tissue lining the uterus (endometrium) breaks down, sheds and exits the body resulting in normal menstruation. Inflammatory hormones – particularly those known as prostaglandins – are linked to the minor cramping and discomfort of a normal period. This is called “dysmenorrhea”. Dysmenorrhea is not the same as endometriosis, nor is the disease simply comprised of ‘normal’ endometrium in abnormal places – as many sources and organizations mistakenly assert.
The following are NOT normal:
- Pelvic pain that gets worse after sex or a pelvic exam
- Chronically heavy or long periods
- Bowel or urinary disorders 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 (in lung endometriosis)
Endometriosis is characterized by the presence of endometrial-like tissue located outside the womb, where it doesn’t belong. These fragments are different structurally, and behave differently, from the normal endometrium which is shed during a period. With endometriosis, the disease 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.
Retrograde menstruation – Sampson’s flawed theory of abnormal backflow; this does NOT explain pathogenesis
Immunologic dysfunction – a “broken” immune system allows for implantation of menstrual debris
Stem Cells – have been demonstrated to populate lesions, even in absence of menstruation
Genetics – a 7-10 fold risk exists in women and girls whose mother or relative has disease
Environmental Toxins – can cause cell changes which allow for implantation and errant immune response
No single theory explains endometriosis in all patients. Likely, we are born with mechanisms which, when later combined – “the perfect storm – trigger the disease.
What does Endometriosis feel like?
Symptoms vary, but classic signs include severe dysmenorrhea, painful sex, chronic pelvic pain, Middleschmertz (painful ovulation), cyclical or perimenstrual symptoms (i.e. bowel or bladder associated) with or without abnormal bleeding, infertility and chronic fatigue.
Women with endometriosis also frequently suffer from autoimmune inflammatory diseases, allergies and asthma , and endometriosis shares similarities with several autoimmune diseases including elevated levels of cytokines, decreased apoptosis and cell-mediated abnormalities.
Minimally invasive laparoscopic excision surgery remains the gold standard for diagnosis and treatment, ideally performed in the specialty treatment setting or performed by an advanced surgeon.
Women with endometriosis are more likely to report their pain as “throbbing” and experience dyschezia when compared with women with an apparently normal pelvis, and specific menstrual symptoms have been reported to occur more frequently in women 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
Women 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
Acute exacerbations may be caused by chemical peritonitis due to leakage of old blood from an endometriomas – large, painful cysts filled with menstrual debris and inflammatory fragments (hence the moniker ‘chocolate cyst’). With conscious laparoscopic pain mapping, painful lesions were found to involve peripheral spinal nerves rather than autonomic nerves -Demco. Mapping the source and character of pain due to endometriosis by patient-assisted laparoscopy. J Am Assoc Gynecol Laparosc. Aug 1998;5(3):241-5
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.
Parity and infertility have long been associated with endometriosis, with infertility among the chief clinical findings. As well, associated pain, anatomic distortion, development of adhesions, altered inflammatory response characterized by neovascularization and fibrosis formation, abnormal T- and B-cell functionality, abnormal complement deposition and altered interleukin-6 are among clinical consequences of this disease -Kapoor et al. Endometriosis Treatment & Management. http://emedicine.medscape.com/article/271899-overview
Endometriosis is also clearly associated with dysmenorrhea, but it is unknown whether this is a cause or a consequence -Koninckx
There is no known prevention for the disease. Likewise, no single cure has been universally defined. Even in the hands of the best surgical excisionists in the world, there has been recurrence post-surgically in a small number of patients.
TREATMENTS: Laparoendoscopic Excision – The Gold Standard
Removal of the disease can confer the best outcomes. To learn more about excisional approach, click here.
Medical Suppression – treats only symptoms, not disease, significant side effects
Physical Therapy – non-invasive, very helpful way of managing symptoms; see Dr. Sallie Sarrel’s information on PT & Endo at https://www.facebook.com/pages/Endometriosis-Infertility-and-Pelvic-Pain-Management/
Alternative Therapies – non-invasive way to help with pain (physical therapy, acupuncture, aromatherapy, myofascial release therapy, exercise (see our group here), herbal therapy, Bach Flower, holistic)
Diet/Nutrition – contributes to reduced symptoms and a healthy lifestyle, see our group at https://www.facebook.com/groups/ERCDietGroup/
Pain Management – coping mechanisms for chronic pain can be offered in a professional pain management setting
Hysterectomy – not a cure and inappropriate for young women!
Temporary Medical Suppressives include:
GnRH agonists, i.e. Lupron®, Synarel®, Zoladex®
Synthetic androgens i.e. Danazol®
Oral contraceptives, i.e. Alesse® or Lo-Ovral®, Seasonale®, Visanne® (Canada), etc.
Injectible contraceptives, i.e. Depo-Provera®
Aromatase Inhibitors i.e. Femara®
The Miracle Cure: every supplement ever sold on the Internet. TAKE NOTE! No supplement has ever been proven for endometriosis ‘cure’! Certain supplements can HELP, however. See http://www.thenutritionista.ca for expert information on supplements, vitamins and nutrition related to endometriosis.
Exercise & Endo: http://www.facebook.com/groups/132842450210584
Developed in 1997 by the Endometriosis Research Center. Thank you to all those foundations and individuals who adopted it for their own use to help others.
Not sure if you have endometriosis? Pelvic surgery is the only current way to definitively diagnose the disease, but symptoms can lead you and your doctor to suspect it. Review the following and consider if any of these common symptoms apply to you. Review your answers with your gynecologist for further discussion.
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? YES / NO
Do you have any relatives diagnosed with endometriosis? YES / NO
Do you find yourself with painful abdominal bloating, swelling or tenderness at any time in your cycle? YES / NO
Do you have a history of painful ovarian endometriomas (“chocolate cysts”)? YES / NO
Do you have a history of miscarriage, infertility or ectopic pregnancy? YES / NO
Do you experience gastrointestinal symptoms during your cycle, such as nausea or vomiting and/or painful abdominal cramping accompanied by diarrhea and/or constipation? YES / NO
Do you have a history of fatigue or feeling “sick and tired” all the time? YES / NO
Do you have a history of allergies, which tend to worsen around your periods? YES / NO
If sexually active, do you experience pain during sexual activity? YES / NO
Do you suffer from autoimmune diseases or other conditions e.g. thyroid disease, rheumatoid arthritis, lupus, fibromyalgia, multiple sclerosis, chronic migraines? YES / NO
Have you ever undergone pelvic surgery like a laparoscopy, in which endometriosis was suspected but not definitively diagnosed? YES / NO
If you have answered “yes” to three or more of these questions, you could have endometriosis. Talk to your trusted nurse or doctor about getting an accurate diagnosis and effective treatment today. Dull aching and cramping can occur during menstruation in many women and teens, due to uterine contractions and the release of various hormones, including those known as prostaglandins. However, period pain that becomes so debilitating it renders you unable to go about your normal routine is not ordinary or typical! Pain is your body’s way of signaling that something is WRONG. If you are suffering from pelvic pain at any point in your cycle, an endometriosis diagnosis should be considered.
Get help. Join today with others who understand: https://www.facebook.com/EndoResCenter
The above information is excerpted from a much larger presentation on the disease. Thank you to Nancy Petersen, RN, the Center for Endometriosis Care, the World Endometriosis Research Foundation and the ERC Diet Group for their invaluable contributions. Be sure to check out http://www.facebook.com/groups/418136991574617 for help as well.
General Inquiries:Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444
Toll Free: (800) 239-7280
Fax: (561) 274-0931