A. No one knows for sure what causes this disease. One theory is that during menstruation some of the menstrual tissue backs up through the fallopian tubes into the abdomen, where it implants and grows. Another theory suggests that endometriosis may be genetic, or runs in families.

Researchers also are looking at the role of the immune system and how it either stimulates or reacts to endometriosis. It may be that a woman's immune system does not remove the menstrual fluid in the pelvic cavity properly, or the chemicals made by areas of endometriosis may irritate or promote growth of more areas. Results from a recent study showed that women who have the disease are more likely than other women to have immune system disorders in which the body attacks its own tissues. This study also found that women with endometriosis are more likely to have chronic fatigue syndrome and to suffer from fibromyalgia syndrome-a disease involving pain in the muscles, tendons, and ligaments. These women also are more likely to have asthma, allergies, and the skin condition eczema. So, researchers feel that further study of the immune system in endometriosis may give important clues to finding the causes of and treatment for the disease.

Other researchers are looking into endometriosis as a disease of the endocrine system, the body's system of glands, hormones, and other secretions, since estrogen appears to promote the growth of the disease. Other research is looking at whether environmental agents, such as exposure to man-made chemicals, cause the disease. More research is trying to understand what, if any, factors affect the course of the disease.

Another important area of research is the search for endometriosis markers. These markers are substances in the body made by or in response to the disease, and can be measured in the blood or urine. If markers are found by a blood or urine test, then a diagnosis for endometriosis could be made without surgery.


Q. What is the treatment for endometriosis?

There is no cure for endometriosis. But there are many treatments, each of which has pros and cons. It is important to build a good relationship with your doctor, so you can decide what option is best for you.

Treatment depends on the the degree of symptoms experienced, the extent of the disease (determined through laparoscopy), the woman's desire for future childbearing, and the woman's age.

Treatment with medications may focus on several strategies. Analgesic therapy, treating the discomfort of the disease only, may be indicated for women with mild to moderate premenstrual pain, with no pelvic examination abnormalities, and with no immediate desire to become pregnant.

"Pseudopregnancy" (a state resembling pregnancy) may be achieved through hormonal drug regimens. This approach was developed in response to the observed regression of endometriosis during pregnancy.

Pseudopregnancy can be induced using oral contraceptives containing estrogen and progesterone. This takes 6 to 9 months and relieves most of the symptoms, but does not prevent scarring and adhesion left by the disease. Potential side effects, such as breakthrough spotting, may limit this option for treatment.

Progesterone medications by themselves are another effective hormonal treatment for endometriosis. Progesterone pills or injections can be used. Possible side effects of these agents -- including depression, weight gain, and breakthrough spotting, may be a problem for some patients.

"Pseudomenopause" (a state resembling menopause) was developed as a means of treatment because of the observation that endometriosis regresses after menopause. Danazol, a weak androgenic (male characteristic) hormonal drug may be used to reduce natural levels of estrogen and progesterone to low levels.

Some studies have shown that the use of danazol may be superior to the "pseudopregnancy" regimens in controlling symptoms and progression of the disease in women with moderate-to-severe endometriosis. However, due to possible side effects from danazol, it is now prescribed less often then some newer medications.

A new class of antigonadotropin drugs has been developed that also produces a "pseudomenopausal" state in women.

These drugs, such as Synarel and Depo Lupron (trade names), prevent stimulation of the pituitary for the production of FSH (follicle stimulating hormone) and LH (luteinizing hormone). This stops the ovary from producing estrogen. Potential side effects of these drugs include: menopausal symptoms (such as hot flashes), vaginal dryness, mood changes, and early loss of calcium from the bones.

Due to the effects on bone density, treatment of endometriosis with one of these agents is usually limited to 6 months or less.

Surgery (either laparoscopy or laparotomy) is usually reserved for women with severe endometriosis, including adhesions and infertility. Conservative surgery attempts to remove or destroy all of the outside endometriotic tissue, remove adhesions, and restore the pelvic anatomy to as close to normal as possible. Nerve removal (neurectomy) may rarely be performed during surgery as a means of relieving the pain associated with endometriosis.

Definitive surgery might be appropriate for women with severe symptoms or disease, and no desire for future childbearing. This type of surgery involves abdominal removal of the uterus (hysterectomy), both ovaries, both fallopian tubes, and any remaining adhesions or endometriotic implants. Hormonal replacement therapy may be indicated after removal of the ovaries and should be tailored to the individual woman's needs. It should be noted that pain can persists following this procedure.

Q. How do I cope with a disease that has no cure?

A. You may feel many emotions - sadness, fright, anger, confusion - and feel alone. It is important to get the support you need to cope with endometriosis. It is also important to learn as much as you can about the disease. Talking with friends, family, and your health care provider can help. You might want to join a support group to talk with other women who are going through the same thing.

Q. How common is endometriosis?

A. In literature, the prevalence of this disease in the general population has been reported to be about five percent of the female population of reproductive age. However, in women with severe menstrual cramps, the incidence of endometriosis has been reported to be between 25 and 35 percent.


Q. Why are ovaries the most common site of endometriosis?

A. If we accept the theory that retrograde menstruation is in large part responsible for the initiation of endometriosis in those women susceptible to the implantation of the endometrial cells, then the number one reason is the position of the ovary. The ovaries are adjacent to the opening of the tube in the pelvic area and that location alone will make the ovaries more prone to be contaminated with the regurgitated menstrual flow.
The other reason is that the ovaries have the highest level of steroid hormone compared to any other organ and hence they represent an ideal environment for implantation and growth of the endometrial tissue. In different studies, the involvement of the ovaries (either unilaterally or bilaterally) has been reported up to 75 percent of the time.

Q. What is a chocolate cyst?

A. Ovarian endometriosis probably starts as a surface lesion. The process becomes invasive and the endometriotic lesion internalizes into the ovarian tissue. Once the menstrual flow and debris collect at the site of endometriosis in the ovaries, endometrial cysts form that are filled with chocolate-colored liquid. These are commonly called chocolate cysts, or endometriomas. These are nothing more than cysts which represent debris from prolonged cyclic menstruation in an enclosed area. These cysts may become very large in size, with some documented as large as a baseball or grapefruit that completely obliterate the normal ovary. However, usually there is a well-demarcated separation between the cyst wall and the normal adjacent ovarian tissue.

Q. I was told that the changes in the peritoneal fluid due to endometriosis is one of the causes of my infertility. What does this mean?

A. Peritoneal fluid is the fluid which every person has in their abdominal cavity and which functions as a lubricant for the abdominal and pelvic organs. It has become apparent in the past decade or so that the presence of endometriosis is associated with changes in this peritoneal fluid, its volume, its cellular population and its biochemistry. Generally, it has been shown that the volume of the fluid is increased in women with endometriosis. The leukocytes have also been shown to be increased in number in the fluid of patients with endometriosis.

Also, the prostaglandin hormone concentration has been reported to be elevated in peritoneal fluid as well as the level of proteolytic enzymes which are all consistent with the localized inflammatory reaction around the endometriotic implants. Since these hormones could each alter the environment of the peritoneal fluid, which is in very close proximity to the ovaries and tubes, it can potentially alter their function. In recent studies, it has been shown that the peritoneal fluid in patients with endometriosis can act as a toxin to an embryo and may even stop the growth of the embryo in its early stages.

Q. What are pelvic adhesions? Why do people with endometriosis have adhesions?

A. Scarring of the peritoneum around endometriosis is a typical and very common finding. The explanation for this is that the bleeding that occurs around each menstrual cycle gets collected, and since there is no escape for this blood, it will start irritating the adjacent peritoneal surface, then start producing irritation and inflammation and eventually, scarring. These adhesions are most common in the immobile pelvic structures, and are most commonly found in the pelvic sidewalls, behind the uterus, between the sigmoid bowel or colon, and on the posterior aspect of the uterus and cervix.

Q. On pelvic examination, I had a retroplaced uterus and my doctor said I had endometriosis. How common is this?

A. A uterus tilted backward is not a specific sign of endometriosis; however, when a patient has endometriosis behind the uterus during the years of menstruation, endometrial implants eventually will form and attach adhesions to the uterus and the pelvic wall, which can displace the uterus. A retroverted uterus has been found in 47 percent of patients with documented endometriosis, but in only 17 percent of women without endometriosis. Whether this is a cause or an effect is unknown. However, the experts in the field agree that the presence of a retroplaced, fixed uterus and pelvic pain along with other symptoms of endometriosis definitely deserves further investigation.


Q. What is the significance of CA-125?

A. There has been extensive investigation of a membrane antigen called CA-125 in women with endometriosis. Several reports have suggested that levels of CA-125 are elevated in women with endometriosis, particularly those in the advanced stages of the disease. A recent study of this antigen level showed it to be high in 90 percent of women with pelvic pain who had endometriosis while it was only elevated in 10 percent of another group of women with pelvic pain without endometriosis. It has been suggested on the basis of these studies that this test could discriminate as a possible diagnostic blood test procedure for the diagnosis of endometriosis in patients with pelvic pain.

Q. Are there any diseases that can be misdiagnosed as endometriosis or vice versa?

A. Endometriosis presents many of the same symptoms as other gynecological diseases. The pain and infertility associated with endometriosis can be seen in other conditions. The most common pelvic disease that could be misdiagnosed as endometriosis is pelvic inflammatory disease, which causes pain, pain with intercourse, and infertility. The other condition is benign or malignant ovarian tumors and other pelvic tumors. Even pathological conditions of the bowel, rectum, bladder, ureter or other urinary organs could simulate endometriosis and be misdiagnosed as endometriosis. This is why we strongly believe that for confirmation and accurate diagnosis of endometriosis, one should do a laparoscopy and biopsy, if needed. Most definitely, no patient should be treated for endometriosis without the diagnosis being confirmed by laparoscopy.
Pelvic congestion syndrome with large pelvic verocosities which may get worse premenstrually could also be misdiagnosed as endometriosis. Diagnostic laparoscopy could be very helpful in confirming the diagnosis. Many cases of endometriosis involving the bladder wall are misdiagnosed as chronic urinary tract infection with essentially negative urine cultures. In these cases, cystoscopy (looking into the bladder) and laparoscopy could be very helpful.

Q. Is there a relationship between endometriosis and the use of tampons?

A. This is unlikely. Scientifically, there has not been any basis to conclude that the use of tampons increases the risk of developing endometriosis. Also, with regard to other hygienic practices (such as douching after the menstrual period), it has not been shown that this increases the risk of endometriosis.


Q. What does endometriosis look like?

A. The presence of endometriosis is characterized by blue-gray lesions on the peritoneal surface, over the pelvic peritoneum or pelvic structures. This distinct appearance can be attributed to the encapsulated menstrual blood and menstrual debris. However, the appearance is critically dependent upon the longevity of the tissue implanted. The initial appearance may be just an irregularity or discoloration of the peritoneal surface. Initially, these lesions may appear tan or hemorrhagic in color. After establishment of viable endometrial transplant and menstrual shedding, the presence of entrapped menstrual debris gives the tissue the typical blue-gray and powder burn appearance.

Many times the lesion of endometriosis may not have any color at all. These lesions are called nonpigmented endometriosis. Clinically, these early lesions, although less impressive than pigmented ones when viewed laparoscopically, are just as important in producing pain and infertility.

Q. How old is the disease?

A. Theoretically, endometriosis should have existed since the beginning of time. However, the first description was about 300 years ago and the first detailed description was in 1860 by a physician named Von Rokitansky.
Our modern-day understanding of endometriosis began with the pioneering efforts of a private physician named Sampson in Albany, New York, in the 1920s. Dr. Sampson proposed that the menstrual backflow through the tubes contained viable endometrial cells which could be transplanted to ectopic sites.

(Compiled from various internet sources).