Q. I have been hearing a lot about ovarian involvement in endometriosis. What about the tubes?
A. The fallopian tubes, particularly in the early stages of endometriosis, are rarely involved anatomically in the process of endometriosis. However, with the progression of the disease, the distal portion of the tube can become adhered to the ovaries and result in diminished mobility and also, presumably, inadequate ovum pickup, and again, decreased fertility in the patient with endometriosis. There is a common understanding among experts in the field of endometriosis that if you see pelvic adhesions, especially around the ovaries and in a patient with no history of pelvic infection whose tubes are open, then this patient has endometriosis. That again goes along with the theory that the tubes are one of the last organs to become anatomically affected by endometriosis. The reason for this could be the mobility of the tube.

Q. Why does the presence of endometriosis cause pelvic pain?
A. 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.

Q. What are the symptoms and characteristics of endometriosis?
A. The most common symptoms include the following:
1. Progressive pelvic pain associated with or occurring just prior to menstruation (75 percent of patients). The localization of the pelvic pain is often related to the site involved in the endometriotic lesion. Usually, the pain is most marked just prior to the start of the menstrual flow and extends into the first few days of the menstrual cycle. Some patients may have pain prior or during ovulation due to the involvement of the ovaries. In some of these women, the pain may persist to the end of their menstrual cycle. Pain during menses (dysmenorrhea), one of the cardinal symptoms of endometriosis, often becomes more severe as the disease progresses.
2. Painful intercourse (32 percent of patients). Painful intercourse (dysparunia) is very common when endometriosis involves the tissues behind the uterus and pelvic walls and the pelvic floor surfaces and the ligaments in this area (the so-called uterosacral ligaments). The pain could be more pronounced and excruciating with deep penetration.
3. Painful bowel movements. Endometrial implants on the colon or the bladder in more advanced stages may cause pain with bowel movements or urination.
4. Premenstrual straining and abnormal uterine bleeding. Disorders of the menstrual cycle, such as premenstrual spotting, abnormal uterine bleeding, lack of ovulation or irregular or inadequate ovulation are common in endometriosis although such disorders are not at all specific to this disease. In some even extensive and advanced stages of endometriosis, the ovarian function has been found to be quite normal.
5. Pain in the suprapubic and bladder area.
6. Painful urination and occasional blood in the urine.
7. Infertility. As far as infertility and endometriosis, it has been shown that the prevalence of endometriosis is three times higher in infertile women when compared to the general population.

Q. Can I have endometriosis without having any symptoms?
A. 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 we like to work up cases of unexplained infertility with diagnostic laparoscopy which will reveal any endometriosis.

Q. What are the characteristics of the pain associated with endometriosis?
A. 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.

Q. Is painful intercourse a symptom of endometriosis?
A. 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.

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

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

Q. How often does endometriosis lead to cancer?
A. The risk of endometriosis developing into a cancerous lesion is very low. Various studies have shown that one to two and half percent of the patients with endometriosis may develop cancerous lesions at the site of endometriosis. However, if we look at the normal endometrium and ovaries, the same risk exists.

Q. 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?
A. 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 my assessment, the patient with pelvic pain, painful periods, painful intercourse and infertility has endometriosis unless it is proven otherwise. Again, in my assessment, the best available way at the present time to diagnose endometriosis is a laparoscopy and direct visualization of the lesion.

Q. I have had two spontaneous miscarriages and later on, when I was diagnosed as having endometriosis, I was told that these events could be related. Is this true?
A. The relationship between spontaneous miscarriages and endometriosis has been a matter of controversy for quite a while. However, many investigators have shown that the rate of miscarriage is higher in patients with endometriosis and shows a marked decline after treatment. It is believed that the biochemistry of the hormones in these patients can explain this phenomenon; for example, decreased serum progesterone in some of the patients and an increased serum prolactin in others. Also, the basic autoimmune problem in these patients can also be a cause.

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. 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?
A. 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.
To prevent this from happening in patients with any possibility of presence of residual endometriosis following total abdominal hysterectomy and removal of the ovaries, estrogen replacement therapy should not be started immediately. Instead, in these cases, a 12-month treatment with progestins (i.e., 200 mg. medroxy progesterone acetate injections every three months) should be instituted before estrogen therapy starts.

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. After I had a hysterectomy, I was told that I had adenomyosis. Is that different from endometriosis?
A. Yes. Endometriosis is a condition which is characterized by the presence of endometrium, or tissue which is histologically identical to endometrium, outside the uterine cavity, the pelvic walls or other areas of the pelvis. Adenomyosis is the presence or invasion of the endometrium into the uterine wall, not outside of the uterus. That is why it has also been called internal endometriosis, although it usually has a much different clinical presentation than that of endometriosis.
However, some of the symptoms could be quite similar. Pelvic pain, heavy and abnormal uterine bleeding and staining and spotting between two periods are the most common symptoms of adenomyosis, and these are also very common in patients with endometriosis. Another feature which makes adenomyosis different than endometriosis is that it occurs in an older age group of patients than endometriosis. Again, endometriosis starts right after menarche, it can be seen in teenage patients, and it is very common in the mid-20s and mid-30s. However, the average age of patients with adenomyosis is 40. Most of these people do not have a problem of infertility, and indeed one of the characteristics of the patients with adenomyosis is that they have already had the number of children that they desired. In this condition, the ovaries are rarely involved in the process and since the invasion of the endometrium is just to the wall of the uterus, the uterus in these patients is usually enlarged symmetrically.
The diagnosis can really only be made after removal of the uterus by looking at the uterine wall under the microscope. The only treatment at the present time for adenomyosis is hysterectomy. Most of the time, this is not a source of major concern to the patient since most of these patients have already had their children and are at the end of the spectrum of the childbearing age.

Q. 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.

Q. What is hydrosalpinx?
A. This is a collection of fluid in the tube which has been blocked at the fimbriated end of the tube. Hydro means fluid and salpinx means tube. A hydrosalpinx occurs in this manner: the tube produces tubal fluid all of the time and the fluid escapes from the tube via the tubal opening. If there is a blockage in the distal portion of the tube, the so-called fimbriated end, the tubal fluid cannot escape and will collect in this area, thus producing what is called a hydrosalpinx. Q. What is hematosalpinx?
A. Hematosalpinx appears in patients who have endometriosis in their tubal lumen. eHHemato means blood and salpinx means tube. During the time of menstruation and the bleeding of endometriosis, blood can get collected inside the tubal lumen, especially if the other side of the tube is also blocked. The collection of the blood in the tube then produces a condition which is called hematosalpinx. This condition has a very similar appearance to a tubal pregnancy; however, it is a chronic condition.

Q. I had blocked tubes near the uterus and I was told it was due to endometriosis. How often does this happen?
A. Endometriosis can be one of the causes of tubal blockage right at the junction of the tube and uterus. Since the junction of the tube and uterus is very fine an produces a condery narrow, the presence of a small amount of endometriosis in this site could indeed block the tube. In one study of patients with tubal blockage at the junction of the tube and the uterus, it was shown that over 60 percent of these patients had tubal blockage due to endometriosis.

Q. How can you differentiate between endometriosis, which causes bleeding in the rectum and bladder, and other diseases of these two organs?
A. One manner of differentiation is by history. Usually, endometriosis in these two organs will cause bleeding during or right after the menstrual period. These patients will have cyclic bleeding with their bowel movements or with urination as opposed to bleeding caused by other diseases of the rectum or bladder. However, to confirm and verify the diagnosis, one should have a sigmoidoscopy or flexible colonscopy (the better choice), or cystoscopy and also a biopsy, if needed.

Q. What is the best way to diagnose endometriosis?
A. 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.

Q. What is laparoscopy?
A. 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.

Q. Can somebody undergo laparoscopy and still have the diagnosis of endometriosis missed?
A. If the laparoscopy is done in a classic and orderly manner, the diagnosis will almost always be made at the time of laparoscopy. By this, I mean a systematic evaluation of the pelvic organs should occur. For example, the physician should look underneath the uterus, the anterior and posterior side of the uterus, the bladder fold, the pelvic sidewall, the ovaries and the tubes. He should then proceed to look behind the ovaries and specifically in the space between the ovaries and the pelvic sidewall.
Not performing a thorough laparoscopy can be one of the reasons that endometriosis is missed at the time of laparoscopy. There is also a technique called second puncture laparoscopy, which mans making another small incision about 1/4 inch around the pubic area and sending a manipulator into the pelvic area and, with the use of this along with the upper laparoscope, to observe the pelvic organs. This is used to manipulate, grasp and move the pelvic organs, especially the ovaries, and to look behind the surface of the ovaries and make sure that no endometriosis in that site is missed as this is one of the most common sites of endometriosis. Findings at the time of laparoscopy should be clearly written, noted and dictated in the patient's operative note (including negative findings).

Q. Do you recommend laparoscopy in patients with suspected endometriosis even if they are not interested in their future fertility?
A. Yes, particularly if the patient is suffering from pelvic pain and we are planning to start treatment for endometriosis. If the patient's history and pelvic examination are suggestive and indicative that the patient might have endometriosis, then the definitive diagnosis can only be made with diagnostic laparoscopy or direct visualization of the pelvic organs at the time of laparotomy, or open abdomen surgery. We strongly believe that no one should be started on treatment for endometriosis without a verification and a diagnosis by laparoscopy or laparotomy and, in some cases, even with a tissue biopsy and a pathological diagnosis.

Q. What is a "second look" laparoscopy?
A. A group of experts in the field of endometriosis have suggested doing another laparoscopy at the end of the treatment period to evaluate the effectiveness of treatment. Because this is the second laparoscopy, it is called a "second look" laparoscopy. In fact, this procedure is becoming much more popular today as compared to 10 or 15 years ago, even for patients who have had major surgery for infertility. For example, more and more infertility experts are going in two to four weeks following a tuboplasty to do another laparoscopy for lysis of adhesions after the major surgery.

Q. I was told that I have pelvic defects. Can you explain this?
A. The pelvic wall is covered by a thin layer called the peritoneal layer. Occasionally there are some defects in this lining which resemble small tears or holes. In several recently published studies, it has been shown at about 1/2 to 2/3 (and in one study, up to 80 percent) of those patients with pelvic defects have endometriosis. For this reason, evaluation and close inspection of the periphery, walls and floors of these defects is highly recommended.

Q. How helpful is a pelvic sonogram (ultrasound) in diagnosis of endometriosis?
A. In cases where endometriosis has produced ovarian endometrioma (chocolate cysts), this test could be helpful to confirm the presence of the cystic mass in the ovaries. Most endometriomas have a specific image of "ground glass" on sonograms as a consequence of collecting old blood and cellular debris. However, this sign is not only seen in endometriosis; the only definite diagnosis of endometriosis is made through laparoscopy. In the past few years, we have been using vaginal ultrasound that yield better images and does not require a full bladder (a very uncomfortable waiting period).

Q. I had a hysterosalpingogram. Could this have shown my endometriosis?
A. This test is designed for exploration of the cavity inside the uterus and to evaluate the patency of the fallopian tubes; in some patients with endometriosis, there is a specific pattern in the tubes, for example, a looser muscle in the wall of the tube, or elevation of the proximal part of the tube (the part near the uterus). However, since endometriosis is a disease basically outside the uterus, this test cannot function properly for the diagnosis of endometriosis.

Q. Is there an optimum time during the menstrual cycle for performing the diagnostic laparoscopy?
A. Choosing a day during the menstrual cycle to perform a laparoscopy depends on several factors. First, what is the purpose of the laparoscopy? Is it for the diagnosis of endometriosis, for evaluation of infertility, or are we looking for other pathological problems? For patients in whom we do a laparoscopy for evaluation of infertility and tubal patency, the best time is right after finishing a period and right before ovulation. This is so we can be sure that the patient is not pregnant and also so that the lining inside the uterus does not cause any problem for evaluating tubal pregnancy. However, if the purpose of laparoscopy is to evaluate ovulation, the best time is seven days or so after the presumed ovulation. Laparoscopy for diagnosis of endometriosis in patients suffering from pelvic pain can be done at any time during the cycle.

Q. What are the pitfalls in the diagnosis and management of endometriosis?
A. If one bases the diagnosis of endometriosis just on history or pelvic examination, misdiagnosis of other conditions as endometriosis or endometriosis as some other condition can occur. The other significant pitfall is to have preconceived notions about the typical or so-called prototype of patients with endometriosis. For example, although it has been proposed that there is a "prototype" of a patient who has endometriosis (Caucasian, slim, possibly over-anxious, one who has postponed her fertility), endometriosis can indeed be found in any woman and should be highly suspected in patients with pelvic pain, specifically pain with their periods, and infertility. Indeed, there is a saying in which I strongly believe: "this is a disease of equal opportunity."
Endometriosis can also be missed in patients with infertility who have a normal infertility workup. In infertile patients, if every other test in the workup, including a hysterosalpingogram, is normal, the patient still could have endometriosis and indeed, the suspicion should be higher. Another pitfall in the diagnosis of endometriosis is a shallow or superficial look at the time of the laparoscopy into just a few areas of the pelvis and concluding that the patient does not have endometriosis. Laparoscopy should be thorough and systematic and all of the possible areas that could be affected by endometriosis must be examined. Another problem can be the physician's expectation of a typical type of "powder burn" pattern of endometriosis. Endometriosis can present itself in many different ways. It may be seen as just pelvic adhesions or with very minimal visual evidence of endometriosis. It can be seen as a peritoneal defect. It can be seen as other atypical endometriotic lesions, such as petechial areas, ecchymotic areas, or areas with yellowish or brownish discoloration, or even with no color (the so-called "nonpigmented" endometriosis).