Your Comprehensive Guide to Understanding Endometriosis

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1 Your Comprehensive Guide to Understanding Endometriosis (Eric Daiter MD, Board Certified in Reproductive Endocrinology and Infertility) What is endometriosis? Problems caused by endometriosis: its symptoms Diagnosing endometriosis Treating endometriosis What to expect after treatment for endometriosis What is Endometriosis? Being told that you might have an abnormal medical condition is upsetting and can be scary. This section defines what endometriosis actually is. Endometriosis is a common abnormality of the female pelvis, affecting millions of women throughout the world, and yet it is often poorly understood (even by experienced Gynecologists). Endometriosis occurs when tissue that normally only lines the inside of the uterus (womb) grows anywhere outside the uterus. These uterine lining cells, called endometrium, are highly active during a female menstrual cycle: prior to ovulation they grow by increasing their number in response to high concentrations of estrogen and following ovulation they are modified structurally to allow for the implantation (and the normal development) of a fertilized egg (embryo) in response to the elevated concentrations of progesterone. If pregnancy does not occur, then the prepared endometrial lining is shed (released) as the woman s menstrual flow. Endometrium that grows abnormally outside the uterus, called endometriosis, is also very active tissue and during the menstrual cycle endometriosis similarly develops in response to estrogen and progesterone. If pregnancy does not occur in a woman with endometriosis, then these thickened lining cells break down, can bleed, and are shed locally but they have no way to exit the body! Endometriosis that breaks down, bleeds and sheds often causes lots of local

2 inflammation, which can then cause lower pelvic pain or infertility. It is not uncommon for endometriosis to remain undiagnosed for many years, even under the care of an experienced Gynecologist. This is unfortunate since there are more treatment options for early stage endometriosis, including less invasive and more effective treatments, and a woman s symptoms can be relieved sooner. Whenever there is a concern about endometriosis, early detection and treatment with an experienced endometriosis expert is ideal since highly effective treatments for endometriosis are now available at select medical centers. Symptoms of Endometriosis: Endometriosis causes inflammation, which can in turn cause symptoms such as lower pelvic pain (anywhere from mild discomfort to killer cramps) and the subsequent development of scar tissue (adhesions) in response to this recurring inflammation. The inflammation that results from endometriosis can also cause the involved organs to malfunction. Endometriosis most commonly grows in the female pelvis around the uterus, fallopian tubes, ovaries, bladder and colon so the symptoms that endometriosis most often causes include female lower pelvic pain, irritable bowel symptoms (painful bowel movements, diarrhea or constipation) or urinary frequency (especially during the time of a menstrual flow). All stages of endometriosis can cause female infertility and endometriosis increases the risk of ectopic pregnancy.

3 Of note, the visual appearance of endometriosis does not reliably predict the severity of symptoms (amount of problems) that it causes. For example, some women with a normal appearing pelvis can have microscopic implants of endometriosis (that can only be seen using a microscope) that reduce fertility or cause tremendous amounts of pain. Meanwhile, other women with advanced stages of endometriosis and scar tissue throughout the pelvis seemingly have little reduction in fertility and no pelvic pain at all. The reason for this lack of direct correlation between the amount of visible endometriosis and the degree of infertility or pain that it causes is presently unclear. Endometriosis research is active and hopefully new insights will be available soon. Diagnosing Endometriosis: Endometriosis should be suspected whenever a woman has cyclic pelvic pain or abnormal function that involves the reproductive organs, bowel or urinary system. Women, as well as their medical care providers, should maintain a high index of suspicion for endometriosis since specialists dedicated to the meticulous treatment of endometriosis can usually treat the troubling symptoms successfully. Unfortunately, the diagnosis of endometriosis is not always confirmed early on and consequently women may suffer through years of frustration and symptoms. The likelihood of endometriosis is increased when there are cyclic symptoms, suspicious nodules on physical examination, characteristic appearances on radiological tests such as ultrasound, or certain abnormalities in blood work, but these findings cannot confirm the diagnosis. Endometriosis can only be diagnosed by direct visualization or tissue biopsy. Direct visualization is most often accomplished using a minimally invasive same day surgical procedure called laparoscopy and treatment is generally completed during the same procedure. For best results, the doctor performing this surgery would have the experience and expertise to accurately diagnose and effectively treat all of the typical and atypical lesions of endometriosis. Many experienced surgeons do not biopsy the lesions unless tissue confirmation is otherwise required. Different types and stages of endometriosis can be distinguished based on their location, the appearance of the lesions, or the size and depth of the lesions. Endometriosis is usually located on the protective thin translucent peritoneal lining (called peritoneum) that covers the pelvic organs, including the

4 reproductive organs, the distal bowel and the bladder. This peritoneum normally contains an abundant supply of sensory nerves, nerves that can perceive inflammation or trauma to cause a pain sensation. The inflammation caused by the endometriosis can also cause the underlying affected organs to malfunction, resulting in reproductive failure, irritable bowel symptoms or painful frequent urination. The classic appearance of endometriosis is a powder burn lesion (thick black raised area that looks like charred tissue) but several atypical lesions have also been identified. It is believed that early signs of recurrent inflammation due to endometriosis result in clear vesicles (look like blisters) along the peritoneum or red flame lesions. Over time these lesions may develop into powder burn lesions or white scarred down lesions. Advanced endometriosis lesions may also bleed into themselves, this blood eventually turns into a thick brown liquid that looks like chocolate syrup, and these lesions are consequently often called chocolate cysts. Chocolate cysts can be found in the ovary (called endometriomas) or under the peritoneum. Any of these endometriosis lesions may vary in size and depth of invasion. In this surgical photograph of endometriosis on the ovary (above), clear vesicles on the ovary can be seen as well as filmy adhesions between the fallopian tube and the ovary. These adhesions reduce the ability of the fallopian tube to function normally and can result in infertility or an ectopic pregnancy.

5 This surgical photograph of endometriosis on the uterus (above) shows clear vesicles covering most of the surface of the uterus, most likely forming as a result of long term cyclic inflammation due to endometriosis. This woman had tremendous ("killer") cramping with her menstrual flow that was completely relieved when this area was properly treated. This surgical photograph of endometriosis on the bladder (above) illustrates classic powder burn lesions on the bladder. Whenever the bladder began to fill this woman had the urge to void (urinate) and when the bladder was emptying she would have sharp stabbing pain in the region of her bladder. Fortunately,

6 these symptoms were eliminated after thoroughly treating these lesions. This surgical photograph of an endometrioma within the ovary (above) demonstrates the thick brown liquid that is released from these ovarian cysts when they rupture or are otherwise opened. This brown fluid is very irritating to the peritoneum and severe lower pelvic pain can result from leakage of this fluid around the ovary. When these cysts are removed it is important to try to remove the entire cyst wall to limit recurrence. For this woman, menstrual cycles were irregular and very painful prior to surgery and they became much more regular with only mild cramps following the complete removal of endometriomas from both ovaries.

7 This surgical photograph of advanced endometriosis (above) shows severe reactions to endometriosis within the cul de sac of Douglas behind the uterus, obliterating this space and resulting in a "frozen pelvis." The ovaries, uterus, fallopian tubes and distal bowel are all stuck together in adhesions and large peritoneal cysts are developing in response to chronic inflammation. Removing all of the dense adhesions to completely free up the pelvic structures, meticulously removing the endometriosis from the region, and removing the peritoneal cysts are the procedures required to optimize postoperative outcome.

8 This surgical photograph of atypical endometriosis (above) shows some classic powder burn lesions next to some red flame lesions along the peritoneal surface of the bladder. Endometriosis lesions are often thought to progress in appearance from clear vesicles (early lesions) to red flame lesions to powder burn lesions to white scarred down lesions (end stage lesions). The powder burn lesions are the "typical" lesions of endometriosis. This surgical photograph of the reproductive organs (above) shows the uterus connected to the right fallopian tube and the fallopian tube lying adjacent to the right ovary. There are a few small areas of endometriosis on the ovary that might develop into endometriomas if left untreated. The irrigator aspirator tool is used to move the ovary anteriorly and laterally to visualize the undersurface of the ovary since the surgeon would otherwise not see these lesions when the ovary is in its usual position tucked under the right side of the uterus. The surgeon who takes the time to thoroughly search for, and appropriately treats, all endometriosis lesions is often rewarded by successfully reducing the woman's symptoms. Treating endometriosis: It is easy to become confused, and even frustrated, by all of the different treatment options suggested for endometriosis. The purpose of this section is to explain specific treatments that are reasonable for different types, and symptoms, of endometriosis.

9 The stages of endometriosis, and the different types of visible lesions, are not reliably correlated to clinical symptoms (the character or amount of pain or the degree of reduced function, including fertility). Therefore, treatment based directly on the woman s symptoms is more common and is reasonable. For example, if a woman with suspected endometriosis has no discomfort and is fertile then the benefit of treatment is low or theoretical at best. Alternatively, if a woman with little visible endometriosis has extreme pain with her menses then aggressive management in the regions of the pain is often (at least in our own personal experience) very beneficial. Knowing when the benefits of treatment outweigh the risks involved with treatment is very important. A complete medical history should identify the entire range of symptoms. The physician should also consider, assess, and attempt to rule out other possible causes for each of these symptoms. When endometriosis is suspected, and the symptoms are interfering with the woman s life to the point where she would rather undergo treatment than continue living with the untreated symptoms, then treatment makes sense. When the primary goal of treatment is to enhance fertility in a woman with suspected endometriosis, laparoscopic surgery has been shown to be most effective. All the medications that are used to treat endometriosis cause at least transient (temporary) problems with ovulation (which further reduces fertility) and most of these medications are contraindicated during pregnancy. Additionally, none of the medications used for medical management of endometriosis have been shown to effectively increase a woman s fertility. Our office routinely suggests a basic infertility evaluation prior to endometriosis surgery whenever the goal is to enhance reproductive potential. This includes an egg evaluation (including hormone blood work and an ovulation history), a male factor evaluation (including a semen analysis), and a pelvic factor evaluation (including a hysterosalpingogram and a postcoital test). Specific treatment alternatives can then be discussed in the context of all of these test results. Most of the published clinical research that has shown positive effects on a woman s natural reproductive potential (fertility) after surgical treatment of endometriosis was performed on moderate to severe stage endometriosis. The greatest increases in fertility were following pelvic repair and reconstruction in women with anatomic distortions, obstructive lesions, or extensive adhesions due to advanced endometriosis. This makes sense since surgery can often structurally correct these anatomic problems. There is less convincing literature to support the effectiveness of pelvic repair in minimal to mild cases of

10 endometriosis, however, this research does exist. One of the first articles to demonstrate the effectiveness of (increase in fertility following) surgical treatment for minimal and mild endometriosis was published in The New England Journal of Medicine in 1997, and subsequently many other articles have supported this finding. The reason why removal of minimal superficial lesions of endometriosis increases fertility is less clear, but many researchers believe that molecular messengers released by these small endometriosis lesions in the pelvis have a toxic effect on fertilization, embryo development or implantation. When the primary goal of treatment is reduction in pain thought to be due to endometriosis (including lower pelvic pain, pain with bowel movements and pain with urination), then both medical management and surgical treatment have been shown to be very effective. Medications that have been shown to be effective at reducing the pain caused by endometriosis include Danazol, Lupron, and Depo Provera. A significant reduction in pain is reported in about 85% of women on medical management using these medications, however, women frequently avoid them since they often take 3 4 months to become effective, they have serious potential side effects, and they cause temporary infertility. Women on Danazol for several months often complain of androgenic side effects, including but not limited to an increase in male pattern hair growth (face, back, upper abdomen), weight gain (central obesity), acne or oily skin, and a decrease in breast size. Women on long term Lupron often complain of side effects related to low estrogen because Lupron turns off the ovaries to produce a pseudo menopause hormonal state that is associated with hot flashes, mood swings, and insomnia. Websites also refer to many other possible side effects but these are uncommon in my personal experience. Women on several months or years of Provera often complain about unpredictable break through bleeding and a chronically depressed mood. Provera can also result in long term anovulation for up to a year after discontinuing the medication, so this should be considered when fertility might be desired after treatment. Surgical treatment of endometriosis can be highly effective at reducing the pain due to endometriosis, significant pain relief can often be achieved within days or weeks, and this relief of pain most often lasts many years. If conservative surgery to remove endometriosis and repair the pelvis is ineffective at reducing or eliminating lower pelvic pain with your current health care provider, then consideration of a second opinion with another endometriosis surgeon, management using medications (despite their side effects), or definitive surgery (including hysterectomy) may be advisable.

11 Other treatment options that are usually not discussed thoroughly in U.S. medical schools include alternative or natural treatments, which are generally based on treatment of the whole person not just the body. Acupuncture has been a part of Traditional Chinese Medicine for thousands of years and often involves the insertion of fine sterile needles into specific locations along with herbal formulas. Naturopathy is based on the belief in the power of the body to heal itself and treat focuses on diet, lifestyle, herbal remedies, and cleansing treatments. Holistic therapies may be combined with the Western Medicine approaches. What to expect after treatment for endometriosis: Endometriosis happens and unfortunately it is under diagnosed and therefore under treated. A thorough surgical treatment for endometriosis often includes the removal of all visible typical and atypical lesions of endometriosis, possibly the removal of the peritoneum overlying symptomatic areas, the lysis of all pelvic adhesions, and the removal of persistent nonfunctional ovarian cysts or other pelvic pathology. When this is performed in a meticulous manner, the surgery takes a long time to complete, generally a few hours. In my experience, if the surgery is performed to relieve pelvic pain, then the treated patient most often has an immediate reduction in the pain that brought her to surgery but now has a new dull aching pain in the treated areas that is due to the inflammation of surgical repair. This discomfort is almost always effectively treated with a nonsteroidal antiinflammatory drug like Motrin, Advil or Ibuprofen for a day or two. If the surgery was performed to enhance reproductive potential (fertility), then we generally recommend healing for a month following surgery and then continuing to attempt conception. Sometimes it is amazing how rapidly the reproductive organs return to normal function and reproductive success is accomplished if the issue causing the problem can be identified and repaired properly. Endometriosis can return after lesions are removed because the mechanism that allowed the endometrial tissue to grow outside the uterus has not been altered. Research is actively investigating ways to inhibit the progression of endometriosis without the significant side effects of the medications that are currently available. Oral contraceptive pills appear to limit progression of endometriosis and these birth control pills are sometimes suggested if fertility is not desired immediately after surgery. The timeframe in which endometriosis

12 and its symptoms return varies from one woman to another, but in my experience most often about 3 5 years of relief is achieved following laparoscopic surgery. If significant symptoms of endometriosis do return, retreatment for recurrent endometriosis can be considered. Medical management for the pain associated with endometriosis usually becomes effective within a few months and these medications are usually continued for at least a short time thereafter. These medications suppress endometriosis lesions rather than removing them and most research suggests a return of pretreatment symptoms within 1 2 years after discontinuation of the drugs. Many consider medical management of endometriosis a temporary measure with minimal long term benefits.

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