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What is Endometriosis?

When a woman has endometriosis, the tissue that lines her uterus, called the endometrium, grows outside of the uterus. When this tissue grows outside of the uterus, it is often found in the pelvic cavity, usually in one or more of these places: on or under the ovaries, behind the uterus, on the tissues that hold the uterus in place, or on the bowels or bladder. In very rare cases, endometriosis areas can grow in the lungs or other parts of the body.

As the tissue grows, it can develop into growths, also called tumors or implants. These growths are usually benign (not cancerous) and rarely are associated with cancer. Growths can cause mild to severe pain, infertility (not being able to get pregnant), and heavy periods.

The endometriosis growths are affected by the monthly menstrual cycle. Each month, the lining of the uterus thickens to get ready for pregnancy. If a woman does not become pregnant, the lining of the uterus sheds and the woman bleeds. When a woman has endometriosis, the growths outside of the uterus also bleed during her period. But there is no way for the blood to leave her body, and inflammation and scar tissue can develop. Blockage or bleeding in the intestines and problems with bladder function may also occur.

What are the symptoms of endometriosis?

A common symptom of endometriosis is pain, mostly in the abdomen, lower back, and pelvic areas. The amount of pain a woman feels is not linked to how much endometriosis she has. Some women have no pain even though their disease affects large areas, or there is scarring. Some women, on the other hand, have severe pain even though they have only a few small areas of endometriosis.

General symptoms of endometriosis can include but are not limited to:
  • Extremely painful or disabling menstrual cramps; pain may get worse over time

  • Chronic pelvic pain includes lower back pain and pelvic pain.

  • Pain during or after sex.

  • Intestinal pain.

  • Painful bowel movements or painful urination during menstrual periods.

  • Heavy menstrual periods.

  • Premenstrual spotting or bleeding between periods.

  • Infertility not being able to get pregnant.

  • Women who have endometriosis may have gastrointestinal symptoms that are like those of a bowel disorder, as well as fatigue.

How would I know if I have endometriosis?

If you think you might have this disease, talk with your health care professional. There are a number of tests a doctor can perform to try to find out if you have endometriosis. Sometimes, imaging tests are used to make a "picture" of the inside of the body, which allows a doctor to locate larger endometriosis areas. The two most common imaging tests are ultrasound, a machine that uses sound waves to make the picture, and magnetic resonance imaging (MRI), a machine that uses magnets and radio waves to make the picture.

The only way to know for sure if you have endometriosis is to have a laparoscopy. This is a surgery with general anesthesia in which a tube with a light is placed inside your abdomen. The surgeon can then check your organs and see any growths or tissue from endometriosis. This procedure will show the location, extent, and size of the growths and help you and your doctor make better treatment decisions. Before surgery, you will need to discuss your medical history with your doctor, and have a physical (pelvic) exam.

What causes endometriosis?

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.

How common is endometriosis?

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.

Is there any age group which is more prone to endometriosis?

Endometriosis has been reported only in the reproductive ages, which means right after the start of the menstrual cycle until menopause or immediate post-menopausal years.

Ovarian function is necessary for the development and maintenance of these endometrial implants. Endometriosis is normally not seen before age 15 or after menopause. In recent years, we have seen more patients with endometriosis below the age of 20. This is due to the use of laparoscopy in evaluating women with symptoms suggestive of endometriosis.

In a recent study of 140 patients aged 10.5 years to 19 years who were complaining of severe pelvic pain, 47 percent had documented endometriosis at laparoscopy as the sole reason for their pelvic pain.

Is endometriosis based on a genetic or familial factor?

Several studies have shown that the incidence of endometriosis is much higher in women having a sister or mother who has already had endometriosis. There was a study conducted involving more than 150 women with endometriosis; of these, 18 (12 percent) were found to have a mother or sister with endometriosis. However, in the same group of women, only two (1.5 percent) showed that they had a mother-in-law or sister-in-law who had endometriosis. This clearly shows that there is a familial tendency with endometriosis. As one can see from these figures, there is almost an eight-fold increase in the risk of endometriosis in women whose mother or sister has been diagnosed as having the disease.

Equally important was the finding that endometriosis on a familial basis tended to be at a more advanced stage when diagnosed and also that it acts more aggressively. It has been suggested that endometriosis might result from an inheritable immunodeficiency state.

Is it true that intercourse during the menstrual cycle increases the risk of endometriosis?

This has not been proved. It has been suggested that intercourse during menses might increase tubal activity and increase the backflow of the menstrual cycle through the tubes and thus increase the risk of endometriosis. However, there are no statistics to bear this out.

Why does endometriosis seem to be discussed more in recent years?

Endometriosis is one of the most common gynecological diseases and is responsible for a significant portion of gynecological surgeries each year. Almost as important as the numbers is the fact that young women with endometriosis are often faced with difficult decisions regarding their future reproduction. One of the main symptoms or consequences of endometriosis is infertility, and since there has been a renewed interest in the United States in fertility, there has also been a renewed interest in this disease.

The introduction of the laparoscope for more accurate diagnosis of endometriosis has also helped us to diagnose more cases in earlier stages in younger women. The result of this increased attention is that more and more women are now forewarned about the symptoms of the disease.

Is it true that endometriosis is more common in some races?

There seems to be some evidence among researchers that Caucasian women are at greater risk than blacks. Two studies have found the prevalence of endometriosis in blacks to be half that of whites. However, the notion that black women rarely suffer from endometriosis is incorrect. Some data shows that the risk of disease among Asian women is even higher than in Caucasians. There are also several studies which suggest that this disease is more common among higher socio-economic groups of women.

Is there a characteristic menstrual cycle of the woman who has endometriosis?

Yes. Many studies have shown that women with endometriosis begin their menstrual cycle at a significantly younger age than women without the condition. Endometriosis is more prevalent in women who have a regular cycle than in women who have an irregular cycle. Another interesting characteristic is that patients with endometriosis have a shorter interval between their periods (less than 27 days). Severe menstrual cramps are also seen much more frequently in endometriosis.

It has been shown that the chance of having endometriosis is four times greater in patients with severe menstrual cramps as compared to women with mild menstrual cramps. Another point is that patients with a prolonged menstrual flow are apt to have endometriosis. It has also been found that if the menstrual flow is longer than a week, the risk of developing endometriosis is 2.5 times greater than in women who have a menstrual flow lasting less than a week.

If I put off having children until my 30s or later, do I have a greater chance of getting endometriosis? Also, is there any truth to the belief that delayed childbirth can lead to endometriosis?

This theory first surfaced in the early 1950s along with the idea that early childbearing offered protection against endometriosis. Although the incidence of endometriosis is higher in women who delay having their first child, this may be because of the fact that endometriosis causes infertility. It is therefore difficult to distinguish whether the infertility preceded or followed the endometriosis. We do believe, however, that pregnancy does have a protective effect on women with endometriosis.

Are more cases being diagnosed with endometriosis in younger women today?

Yes more cases of endometriosis are being diagnosed right now in a younger age group of women. Twenty-five years ago, the diagnosis was mainly based on severe symptoms and palpable masses in the pelvic area, and was confirmed by laparotomy. Patients were typically in their mid or late 30s. However, with the use of laparoscopy, the typical age at which the diagnosis is being made has dropped significantly. Currently, it is somewhere in the mid to late 20s.

Do you see endometriosis after menopause?

Normally, no. This is because the growth of endometrial implants are dependent upon the female hormone. After menopause, the ovaries cease to produce the hormones that promote the growth of endometriosis and we usually do not see many cases. However, after menopause, there are two factors which may promote or maintain endometriosis. One is the use of estrogen replacement therapy and the other is the presence of high endogenous estrogen in obese patients.

Is endometriosis a disease of modern times?

The presence of endometrial tissue outside the uterus was first reported about 300 years ago in 1696 by Sabiard. However, since the turn of the century, and especially in the 1920s, it has been known that endometrial tissue outside of the uterus is responsible for painful menstruation, pelvic pain, pain with intercourse and infertility. The fact that we have been hearing more about endometriosis in the past two or three decades is due to more awareness by the public and physicians about the condition.

Today, physicians are looking more for this condition in patients who have pelvic pain, pain with menstruation and infertility. Also, there are better tools for diagnosing endometriosis, especially in the early stages. The primary tool was once only the pelvic examination, or at the time of surgery.

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

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.

If the retrograde flow of menstrual bleeding through the fallopian tube is a major mechanism for endometriosis, why don't all women have endometriosis?

Although some degree of menstrual backflow occurs almost universally, only those women who are predisposed to having endometriosis will allow the cells to implant in the pelvic area. Patients who have some deficiency in their immunological system, women who have more frequent periods (shorter than 27 days), or women who have longer days of bleeding with their period (more than 7 days) are more prone to develop endometriosis.

Why does the presence of endometriosis cause pelvic pain?

In the early stages of endometriosis, small areas of surface endometriosis tend to rupture, which could produce pelvic irritation and pelvic pain. Another reason for the pain can be the presence of adhesions in the pelvic area which make the pelvic organs rather fixed. Any motion of these organs (e.g., during intercourse), could produce pelvic pain. One other theory for pelvic pain during the menstrual cycle in patients with endometriosis has been the chemical changes that occur in the peritoneal fluid. The sudden onset of severe generalized abdominal pain is highly suggestive of leakage or rupture from an endometrioma into the abdominal cavity.

Can I have endometriosis without having any symptoms?

This does occur in some patients. The symptoms of endometriosis are highly variable. For instance, a patient with very extensive endometriosis may be incapacitated with pain or have very few symptoms. The same variability can be seen in mild endometriosis. Therefore, if the classic symptoms and signs and the physical findings of endometriosis are present in a patient, the diagnosis obviously could be straightforward. However, the absence of symptoms or physical findings does not mean that endometriosis is not present. Infertility is, at times, the only symptom, which is why a work up is necessary in cases of unexplained infertility with diagnostic laparoscopy which will reveal any endometriosis.

What are the characteristics of the pain associated with endometriosis?

Pelvic pain and painful periods in particular are the cardinal symptoms of endometriosis. In the most classic type of endometriosis, the pain usually starts shortly after menarche, which is the first few months right after the start of the period as a teenager. Most patients will attest that they always had pain with their period which eventually got worse as the years went by and increased in intensity and severity. The pain is usually on the sides and often is described by patients to be "a pain deep inside me."

The pain is produced by bleeding and a so-called "miniature period" at the site of endometriosis, which causes swelling of the peritoneum around it, which, in turn, causes pain. Another possible mechanism for the pain could be the chemical changes in the peritoneal fluid (i.e., changes in the prostaglandins which have been postulated to sensitize nerve endings to pain stimuli). However, why some women have painful periods with even a very mild degree of endometriosis cannot be fully understood, especially in view of the fact that other patients with much more extensive disease have much less pain and, in some cases, no pain at all. One other explanation for patients with pain in endometriosis is the involvement of other organs, such as the rectum or colon. Bleeding of the endometriosis around or in the muscle wall of the colon and rectum again causes expansion of this area and associated pain. This causes pressure and some sense of urgency for bowel movements during the menstrual period in some patients, especially if the disease is more extensive and is getting into the lumen of the bowel. It can also cause bloody stools during or prior to menstruation.

Is painful intercourse a symptom of endometriosis?

Painful intercourse (dysparunia) is one of the most common symptoms of endometriosis, especially in the more advanced or severe stages. The pain is described by patients as occurring during deep penetration and also as being deep in the pelvis. Although in its early stages this pain is at the lateral side of the pelvis, soon after it could be anywhere or all over the pelvic area, and can make intercourse unpleasant and miserable for the patient. This may also play a role in subsequent infertility

Is it true that some patients with endometriosis have bloody stools, bloody urine, painful urination and painful bowel movements?

If the endometriosis has invaded to the rectum or bladder's innermost lining, the mucosa, the patient may have bloody stools or urine during the menstrual cycle when the bleeding occurs in these areas. We must emphasize that these are not very common symptoms of endometriosis. Involvement of these areas is usually seen in extensive or advanced stages of endometriosis, and not many patients progress to these stages today. This is mainly due to our knowledge of endometriosis in recent years and the more liberal use of diagnostic tools, mainly laparoscopy, in the early detection of endometriosis.

I was told that I have uterine fibroids and endometriosis. Does this happen frequently?

Endometriosis can often co-exist with other gynecological problems. These problems could also be a contributing factor in some of the patient's symptomatology (i.e., prolonged and abnormal periods, pelvic pain, pelvic pressure and even infertility). Almost 15 percent of patients with endometriosis have other pelvic pathology, such as uterine fibroids, unrelated to endometriosis.

I have pain all the time and since the pain of endometriosis is usually just prior and during the menstrual cycle, is it possible that I have endometriosis?

Usually, the pain associated with endometriosis is right before or during the menstrual period in the initial stages; however, as the disease progresses, it may occur throughout the cycle. The pain may be acute or chronic. In about half of the patients with severe or extensive endometriosis, the pain is chronic all through the cycle which gets worse right before and during menstruation, and during or shortly after intercourse.

In the past, some clinicians have used pain medications which have been known to be anti-prostaglandin as a test by giving it to the patient and assuming that if they have relief, they have endometriosis. However, this does not appear to be the most valid way of diagnosing endometriosis. In studies, the patient with pelvic pain, painful periods, painful intercourse and infertility has endometriosis unless it is proven otherwise. The best available way at the present time to diagnose endometriosis is a laparoscopy and direct visualization of the lesion.

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

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.

I had a hysterectomy and removal of my tubes and ovaries. However, two years later, I had a very painful area in my pelvis and was told that I had endometriosis. Is this possible?

Yes. Sometimes when a total abdominal hysterectomy with removal of both tubes and ovaries is performed, the surgeon cannot remove all of the implants in the pelvic area. When both ovaries are removed, the patient needs replacement of an exogenous hormone, namely estrogen or estrogen and progesterone. These exogenous hormones can stimulate the remaining endometrial implants and cause persistent cyclic bleeding and eventually produce painful nodules of endometriosis in the pelvic area. This is found most commonly in the top of the vaginal area where the uterus has been removed. This can also happen in patients who have a hysterectomy without removal of the ovaries.

Before I had my laparoscopy, I was told I might have endometriosis or a chronic case of pelvic inflammatory disease. How are these different?

A. Chronic pelvic inflammatory disease (PID) has most of the symptoms and physical findings of pelvic endometriosis. Most of the patients with PID have bilateral pelvic adhesions, adhesions around the tubes and ovaries, and they might have a mass in the pelvic area. Since it happens also in younger age groups, these two conditions could be misdiagnosed or could simulate each other very much. These two conditions may also have some similarity in their ultrasound examinations (i.e., a cyst in the ovary as a result of endometriosis could resemble a chronic ovarian abscess). However, if one goes back to the history of these patients with PID, it will usually be found that there is a history of acute pelvic infection, and a history of fever and pain which subsided with antibiotic therapy. Again, for confirming the diagnosis of either of these and differentiating them from each other, diagnostic laparoscopy is necessary and recommended.

What is the best way to diagnose endometriosis?

Direct visualization of the endometrial lesion is currently the best method for definitive diagnosis. This is done by laparoscopy. As we have mentioned again and again, the patient's history will suggest that she might have endometriosis. Pelvic examination will corroborate this diagnosis. However, it is the direct visualization that confirms or verifies the presence of endometriosis. The diagnosis was once done mainly through, or at the time of, laparotomy or major surgery. Today, laparoscopy has replaced other modalities of verifying the diagnosis of endometriosis.

What is laparoscopy?

Laparoscopy is a procedure in which the physician can look directly inside the abdomen and pelvic area and observe the anatomy of the abdominal and pelvic cavity and detect any pathological findings.

In performing a laparoscopy, after induction of anesthesia, a very small incision is made, usually about 1/4 inch, right underneath or inside the folds of the navel. A telescope-like instrument is then inserted which is usually as thin as, and slightly longer than, a pencil. This instrument is attached to a light source which illuminates the pelvic and abdominal cavity. The physician can then look directly inside the cavity and observe the uterus, tubes, ovaries and other pelvic structures. He can then observe any pathological findings, such as pelvic adhesions, ovarian cysts, pelvic endometriosis or any other abnormal conditions.

The diagnosis of endometriosis is not the only use for laparoscopy. It has also been used in the diagnosis of infertile women, especially if the infertility has been longer than two years, or if the infertility screening studies have been normal, or in any patient with so-called unexplained infertility. Another use or indication for laparoscopy has been in other types of pelvic inflammatory disease or patients with pelvic adhesions. Laparoscopy has also been used extensively in the past decade as a tool for the treatment of many pelvic conditions.

What percentage of patients with endometriosis are infertile?

A variety of studies have shown that between 30 and 50 percent of patients who suffer from endometriosis have some degree of reproductive failure. This figure is almost three times higher than the number of women in the general population who have difficulty getting pregnant. In terms of what percent of infertile patients have been found to have endometriosis, again, different studies have shown different figures, but the general consensus is around 15 to 20 percent of infertile patients are suffering to some degree from endometriosis.

In infertile patients with endometriosis, what is causing the infertility?

At the present time, there is not one single factor that can explain the cause of infertility in all patients with endometriosis. Obviously, the cause of infertility in women with severe endometriosis is much easier to understand. In these patients, the extent of the pelvic adhesions, the distortion of the tubes and ovaries, and occasionally because of the destruction of the ovarian tissue, the infertility can be easily explained due to the anatomical distortions that affect the pickup of the egg by the tube and the effect of severe endometriosis of the ovary and ovulation.

However, the cause or relationship of endometriosis in the minimal stage on infertility is not as clear, and what makes matters more fascinating is that we see many women with endometriosis who have normal fertility. However, the fact that 60 to 70 percent of these patients with minimal to mild endometriosis who also have infertility will conceive after treatment, and the fact that the majority of them will conceive within the first year after treatment, is convincing evidence that the presence of endometriosis can interfere with fertility. In a study which was done in a group of patients who received donor semen insemination as a treatment for infertility, it was found that the presence of mild endometriosis decreased their chance of pregnancy. So there is evidence that even minimal endometriosis can interfere with fertility.

The mechanism by which endometriosis could interfere with reproduction has been suggested to be:
  • Interference with normal ovulation by interfering with development of follicular growth and function.

  • Interference with sperm mobility.

  • Interference with the release of eggs, thereby causing inadequate or even no ovulation.

  • Changes in the peritoneal fluid, thereby producing a hostile environment for sperm and ovum.
I was told that I have luteal phase defect. What is this and how common is it?

The luteal phase is the second half of the menstrual cycle. The menstrual cycle traditionally has been divided into two parts. The first two weeks have been called the proliferative phase. This is the time that the ovarian follicle is being developed. The lining inside the uterus is proliferating and getting ready for ovulation and possible implantation.

The second half of the menstrual cycle, or the last two weeks, is characterized by a dramatic increase in the hormone progesterone, which is produced by the part of the ovary which is called the corpus luteum. The presence of progesterone is very critical for proper implantation of the fertilized egg and adequate amounts of this hormone are necessary for implantation.

In patients with endometriosis, several studies have indicated that there is a higher incidence of this luteal phase deficiency or luteal phase defect. Another problem which has recently been described in patients with endometriosis is the so-called luteinized unruptured follicle syndrome. In this case, the patient will ovulate but the egg does not come out of the ovary and it becomes entrapped in the ovary, which can obviously account for infertility in some of the patients with endometriosis.

What are my options for relieving my pain?

Since the pain in women with endometriosis has been attributed to the presence of inflammatory process as a result of the high levels of prostonoids in the endometrial implants, the use of nonsteroidal anti-inflammatory drug (NSAID) that interferes with the production of these chemicals makes quiescence in the patient. Studies have shown that the use of medication such as naproxen sodium (Anaprox-Syntex) can cause substantial pain relief (in over 80 percent of cases) in patients with laparoscopic documented endometriosis. The same results have also been achieved with ibuprofen. I should mention that these medications seem to be more effective when initiated at the first signs of discomfort rather than waiting for severe pain to develop.

The use of codeine-based pain medications, so long as there is close supervision and limited course (a few days each month) has little addiction possibilities and, in many patients, could be extremely helpful in pain relief.

Natural Alternatives for Endometriosis

Bioidentical Progesterone Cream (Progensa 20)

Since we know that estrogen initiates endometrial cell proliferation and the formation of blood vessels accumulation in the endometrium, the aim of treatment is to block this monthly estrogen stimulus to the aberrant endometrial islets. Bioidentical Progesterone stops further proliferation of endometrial cells.

Herbal Formula (ProSoothe)

ProSoothe is an all natural herbal formula that significantly improves uterine fibroids and pelvic pain/cramps, irritability, tension, mood swings, acne, headaches, breast pain, bloating and weight gain.

Also found in this synergistic herbal formula is dandelion and vitex,(chaste tree) that helps the body remove exogenous,(external excess estrogen)from hormone therapy or contaminated food,(xenosteroids).

With time the monthly pains gradually subside as monthly bleeding in these islets becomes less, and healing of the inflammatory sites occurs.

Evening Primrose Oil

Evening primrose oil (EPO) contains gamma-linolenic acid which is an omega-6 fatty acid. Omega-6 fatty acids decrease inflammation which helps with aberrant endometrial islets which respond monthly to the hormonal changes and become inflammed and shed like normal menstrual tissue.

Recommended Herbs

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