“ENDO 101:”
The Basics

You’re laying in the recovery room after having a laparoscopy and your head is spinning. Your world is a foggy place and all you know is, you hurt. In the midst of this confusion, your doctor pops in and says, “great news! We found the reason for your pain. You’ve got Endometriosis. See you next week at post-op!” When the groggy feeling lifts and you start to regain your strength, you wonder, “what on earth is Endometriosis?!”
The Basics
Endometriosis is a disease affecting an estimated 77 million women and teens worldwide(1). It is a leading cause of infertility, chronic pelvic pain and hysterectomy. With Endometriosis, tissue like the endometrium (the tissue inside the uterus which builds up and is shed each month during menses) is found outside the uterus, in other areas of the body. These implants respond to hormonal commands each month and break down and bleed….

However, unlike the endometrium, these tissue deposits have no way of leaving the body. The result is internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, expression of irritating enzymes and formation of scar tissue. In addition, depending on the location of the growths, interference with the bowel, bladder, intestines and other areas of the pelvic cavity can occur. Endometriosis has even been found lodged in the skin and at other extrapelvic locations like the arm, leg and even brain.

The presence of disease can only be confirmed through surgery like the laparoscopy, but it can be suspected based on symptoms, physical findings and diagnostic tests.

Often, younger women and teens who present to their healthcare providers with symptoms are dismissed and told they have PID or that they are too young to have Endometriosis. This is not the case. Endometriosis has been found in autopsies of infants(2) and in menopausal women. Endometriosis has even been found in men!(3)

Contrary to common misconceptions about the disease, there is no cure. There are, however, several methods of treatment which may alleviate some of the pain and symptoms.

Symptoms include: chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility/ miscarriage(s) / ectopic (tubal) pregnancy
dyspareunia (pain during intercourse) / pain after intercourse
backache
leg pain
painful intercourse
nausea / vomiting
abdominal cramping
diarrhea
rectal pain
constipation
painful bowel movements
blood in stool
rectal bleeding
sharp gas pains
bloating
tailbone pain
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
hypertension
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity
deep chest pain
pain in the leg and/or hip which radiates down the leg
painful nodules, often visible to the naked eye, at the skin’s surface…can bleed during menses and/or appear blue upon inspection
fatigue, chronic pain, allergies and other immune system-related problems are also commonly reported complaints of women who have Endo. Remember, it is quite possible to have some, all, or none of these symptoms with Endometriosis.
Because Endo symptoms are so inconsistent and non-specific, it can easily masquerade as several other conditions. These include:

adenomyosis (“Endometriosis Interna”)
appendicitis
ovarian cysts
bowel obstructions
colon cancer
diverticulitis
ectopic pregnancy
fibroid tumors
gonorrhea
inflammatory bowel disease
irritable bowel syndrome
ovarian cancer
PID (pelvic inflammatory disease)

What does it look like?
Endometriosis can present in almost any color, shape, size and location. This includes clear, microscopic papules that can lodge themselves on the underside of organs or beneath the skin. Unfortunately, physicians who are less trained to recognize all manifestations often miss diseased areas, instead searching for visible, common “powder-burn” type lesions on the reproductive organs. In reality, the lesions can be black, red, blue, brown, clear, and raspberry colored, and microscopic in size. The lesions can be spread throughout the entire abdominal region, bowels, bladder, and other areas, and may not be visible without proper magnifying equipment.

Is it Fatal?
The disease itself is classified as “benign.” However, recent studies indicate that women with Endometriosis may have a slightly greater risk of developing cancer of the breast or ovaries and a greater risk of cancers of the blood and lymph systems, including non-Hodgkin’s lymphoma. Researchers caution that the cause of the relationship is unclear. The association may be due to drugs or surgery used to treat the condition rather than Endometriosis itself, and only women with the most severe form of the disease may have the excess risk, according to a report in the American Journal of Obstetrics and Gynecology(4) .

According to lead study author, Dr. Louise Brinton of the Cancer Epidemiology and Genetics Division of the National Cancer Institute in Bethesda, Maryland, the results are “provocative in suggesting that women with Endometriosis may experience elevated risk of certain cancers.” In the study of 20,686 Swedish women hospitalized for Endometriosis, the women had a 20% greater risk of developing cancer overall, particularly of the breast, ovaries and the blood and lymph cells, during an 11-year period. The women actually had a lower risk of cancer of the cervix. “The Endometriotic tissue and its surroundings will be enriched in growth factors and cytokines that might have a deleterious effect on the growth regulation of other cells, some of which may be in distant organs – for example, breast tissue,” Brinton wrote. The growth factors might act as carcinogens, thus promoting cancer.(5)

There are other possible explanations as well. Women with Endometriosis are also more likely take certain drugs, such as Progestagens and are more likely to have had their ovaries or uterus removed, another factor that influences hormone levels, and possibly cancer risk. It is also possible that women with Endometriosis may be screened more often for breast cancer and therefore be more likely to be diagnosed with the disease. Endometriosis has also been linked to a lack of physical activity and to exposure to the environmental contaminant, dioxin. These two factors might be to blame for the cancer risk, rather than Endometriosis.

Findings of one of the largest surveys conducted of over 4,000 Endometriosis patients in the United States and Canada(6) have indicated possible links to other serious medical conditions, including a 9.8% incidence of melanoma, compared with 0.01% in the general population, a 26.9% incidence of breast cancer, compared with 0.1% in the general population; and an 8.5% incidence of ovarian cancer, compared with 0.04% in the general population. Women with Endometriosis who participated in the survey also had a greater incidence of auto immune conditions and Meniere’s disease.

What are “Stages?”
Your surgeon determines the extent and severity of your disease once confirmation of diagnosis is made through both sight of the lesions as well as biopsy results(7). Staging has been defined by the American Society for Reproductive Medicine (formerly the American Fertility Society), with criteria based on the location of the disease, amount, depth and size. These factors are all graded on a point system and classification is thus determined. The first classification scheme was developed in 1973, but since then it has been revised and refined 3 times for a more precise method of documentation. As of 1985, the stages are classified as 1 though 4; minimal, mild, moderate, and severe. Stage of the disease is not indicative of level of pain, infertility or symptoms. A woman in Stage 4 can be asymptomatic, while a Stage 1 patient might be in debilitating pain.

How is it Treated?
Endo can be treated in many different ways, both surgically and medically. Most commonly, surgery will be performed during which the disease will be excised, ablated, fulgarated, cauterized or otherwise removed, and adhesions will also be freed. When adhesions are present, a women’s organs are literally bound together.

It is extremely important that a woman with Endo obtain treatment from a highly trained Endo treatment provider. There are many inexperienced physicians out there, sadly enough, who will a.) miss the disease altogether and not perform biopsies on tissue samples to confirm the diagnosis; b.) will confirm the presence of disease but make no attempt to remove it during surgery; or c.) will make the diagnosis, but will remove it in an incomplete or ineffective manner (such as ablation, which has been shown to be relatively ineffective on deep lesions). Doing so will unfortunately (as has been my experience and that of other survivors of the disease) allow the disease to flare again in a relatively short time. This vicious cycle only requires more surgery thereafter to once again lyse adhesions and treat the disease. Starting disease management with an Endo expert in the beginning of treatment can prevent repeat surgeries and ineffective treatment measures.

Surgeries include but are certainly not limited to: the laparoscopy; the laparotomy; presacral and uterosacral neurectomies – primarily done to lessen pain associated with Endo, where the nerves transporting sensation to the uterus are cut; and various levels of hysterectomies, where some or all of the reproductive organs are removed. It should be stressed that this method will only relieve the symptoms associated with growths on the reproductive organs, not the bowels or kidneys and related areas where Endo can be present.

There are several drugs utilized either alone or in combination with surgery. These include contraceptives, GnRH agonists, and/or synthetic hormones. GnRH agonists are commonly used on women in all stages of the disease and may sometimes have serious side affects. Be sure to inform yourself about all aspects of any drug before undergoing therapy with it.

GnRH (gonadotropin releasing hormone) analogues are classified into 2 groups: agonists and antagonists. Agonists are commonly used in the treatment of Endo by suppressing the manufacture of FSH and LH, common hormones required in ovulation. When they are not secreted, the body will go into “pseudo-menopause,” stalling the growth of more implants. However, these are again only stop-gap measures that can be utilized only for short term intervals, and the key word here is suppression. Once the body returns to it’s normal state, the Endo will again begin to implant itself.

Commonly Prescribed medications include: Leuprolide Depot – “Lupron” (Leuprolide Acetate) – administered as subcutaneous injection
Synarel (naferalin acetate) – administered as a nasal spray

Zoladex (goserelin acetate) – a subcutaneous implant placed into the abdominal wall
Suprefact (buserelin acetate) – also administered as a nasal spray
Danazol, a synthetic male hormone commonly marketed as Danocrine or Cyclomen
Depo-Provera (medroxyprogesterone acetate)-injectable form of progestins
Provera (same as above; administered in pill form)
Any combination estrogen/progesterone oral contraceptive recommended by your doctor

For treatment updates, please see “Endometriosis 2000 & Beyond: the Future of Research & Treatment.”

Living with a Chronic Illness:
While it cannot currently be cured, it is important to understand that Endometriosis is a disease that can be managed. It does not have to own you. Finding the right surgeon and choosing the right approach to treat your disease is crucial. Whether it be excision surgery, medical therapy or alternative healing that appeals to you and works to relieve your symptoms, the answers are out there. And remember…you are not alone.

For more information and support, please visit the Endometriosis Research Center on the web or call the ERC toll free at 800/239-7280.
Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.