Endometriosis can be a painful, chronic disease that affects up to 16% of infertile women. It can return even after treatment and occurs when tissue that lines the cavity of the uterus or endometrium is found outside the uterus - most commonly in the abdomen on the ovaries (sometimes forming a cystic cavity full of blood known as an endometrioma), fallopian tubes, uterus, lining of the pelvis, bladder and the bowel. Endometriosis is generally more common in caucasian women in their late 20's and 30's. One of the most common theories, as to the cause of endometriosis, is that during normal menstruation, the menstrum or menstrual tissue, not only comes out of the vagina as menstrual blood but flows backwards through the fallopian tubes and implants on the above mentioned sites. Once "implanted", these growths or lesions respond each month, hormonally, to the menstrual cycle in the same way that the normal lining of the uterus does. Each month the tissue builds up, breaks down, and sheds. Menstrual blood in the uterus can exit through the vagina but the tissue and bloodshed by these "endometrial implants" have no way of leaving the body. This causes internal bleeding and inflammation of the surrounding tissue; resulting in pain, scar tissue and adhesion formation and possible infertility. Although, the classic signs of endometriosis are painful periods, pain during intercourse and infertility; some of the worst endometriosis can be pain free. Endometriosis is also associated with repeated pregnancy loss, irregular periods and ovulatory dysfunction. On the other hand, the best treatment for endometriosis is pregnancy.
Treatment for endometriosis includes surgery or medication. Before any treatment is considered it is essential to make the diagnosis. A number of different medical conditions can present with pelvic pain and not be endometriosis. These include: irritable bowel syndrome or spastic colon, benign ovarian tumors, gastrointestinal symptoms and just normal menstrual pain. The gold standard for the diagnosis of endometriosis is to confirm visually and/or make a pathological diagnosis from a biopsy. If there is a high suspicion of endometriosis based on the woman's symptoms than it can be confirmed by diagnostic laparoscopy, which is an out-patient procedure, where a small laparoscope is placed through the belly button in order to view the entire pelvic and abdominal cavity. Classic endometriosis appears as blue-black staining, like powder burns from a gun shot at close range, and less commonly, as vesicles, or small fluid filled sacs, known as vesicular endometriosis. Endometriosis can appear as isolated implants throughout the pelvis or anywhere in the abdomen, including the bowel and even the liver and diaphragm. Many times, it is associated with scar tissue and adhesion formation, adhering organs to each other and, thus mechanically, preventing a woman from conceiving.
If endometriosis is suspected but there are not a lot of clinical symptoms, rather than doing a surgical procedure that might not confirm the diagnosis, ACFS recommends doing a CA-125. This is a glycoprotein that is produced by the uterus, cervix, fallopian tubes, and the lining of the chest and abdomen. When any of these tissues are damaged or inflamed, small amounts of CA -125 can spill into the bloodstream where a blood test can detect it. Endometrosis definitively is associated with inflamming the surrounding tissue. Initially used to test for ovarian cancer, which presents with extremely elevated levels; it can be slightly elevated in woman that have endometriosis. In general, levels of CA-125 in excess of 35 U/ml are considered elevated and may be suggestive of endometriosis. You must remember, however, the CA-125 is only a screening test for endometrosis. If it is elevated, it is very suggestive that you may have endometriosis and further investigation should be done; but if it is negative, it does does not necessarily mean that you do not have endometriosis. A clinical decision needs to be made as to whether or not you want to do any further testing.
At surgery, if endometriosis is found, it can be treated by cautery or laser vaporization, to "burn-off" the endometrial implants, adhesions can be taken down to free up the surrounding tissue, and endometriomas can be removed from the ovary. If the disease is too extensive and cannot be gotten safely and effectively by laparoscopic surgery, an open incision, or laparotomy, may need to be done to adequately remove the disease. Whether, after laparoscopy or laparotomy, if the surgeon feels that they did "not get all the endometriosis and/or the overall appearance of the pelvis is inflammed, suggesting "microscopicdiease", then ACFS recommends that follow-up medical treatment be started for at least 6 months.
The theory behind medical treatment for endometriosis is to "burn-out" the implants by stopping hormonal stimulation to them. It is the cyclic natural hormonal stimulation of a woman and the subsequent shedding of the menstrual lining, that inflames and damages the surrounding tissue leading to scar tissue and adhesion formation. The standard of care treatment is the use of Lupron, in a long acting preparation, known as Depo-Lupron. Lupron Depot (leuprolide acetate for depot suspension), a GnRHagonist, is a hormonal agent that significantly reduces estrogen levels by shutting down the signals from the hypothalamus and pituitary to the ovary. The medication works in two distinct phases. Phase one stimulates the ovaries, for a very short period of time, causing them to produce more estradiol. In phase two, the messenger hormones that tell the ovaries to produce estrogen decline dramatically. The resulting drop in estrogen causes a woman's menstrual cycle to shut down and up to 80% experience menopause-like side effects. Actually, if you do not experience menopausal side-effects on Lupron, you probably will not have menopausal symptoms when you enter the true menopause. The most common menopausal symptoms related to the treatment are hot flushes and vaginal dryiness. Remember, you are not a menopausal woman going throughthe "change of life", just a young woman who is being treated for endometriosis. The menopausal symptoms are always reversible when the drug is stopped and ACFS is not aware of a sngle case in the literature that was not reversible. The treatment is continued monthly, as a single IM injection, for a minimum of 6 months and, in very bad disease, up to one year. If a woman is having significant side-effects from the Depo-Lupron or if it is to be continued for more than 6 months, very small doses of estrogen and progesterone (not enough to stimulate the endometriosis) can be "added back" and will cause the menopausal symptoms to abate. Treatment longer than 6 months can actually cause bone loss so "add-back" therapy is required.
The best time for pregnancy is in the first year to 18 months after surgical and/or medical treatment for endometriosis. If endometrisos is diagnosed, and a woman is not interested in pregnancy, she can "buy" some time by either doing a 6 month course of Depo-Lupron if it is warranted; or be put on cyclic birth control pills which some studies have shown may reduce the rate of return of endometriosis. But return it will. The goal is to achieve all your pregnancies before the disease gets so bad the you have to do IVF or have a hysterectomy because you are tired of surgeries every 2-5 years or just tired of the symptoms. Sometimes, before this is accomplished, the woman may have had two or three surgeries and one or two treatment courses with medication. If a woman cannot use Depo-Lupron because of the expense and/or no insurance coverage (which, by the way, is unlikely), continuous birth control pills (OCAs) are an option. By using continuous OCAs, you can stop the monthly shedding of the uterine lining and allow the endometriosis to "burn-out" since it is deprived of hormonal stimulation. The downside of using OCAs is that you have to be on them for 9 months to do any good, and the possible side-effects of a possible prolonged "pre-menstrual" state is not tolerated by a lot of women. Also, since there is estrogen and progestin in OCAs, they are not as effective as Depo-Lupron.
If surgery is recommended, it should be done by someone who has extensive experience and expertise. If a woman is in the childbearing years and has no children or still wants or is thinking about having more children, then hysterectomy is never an option. Far too often, this is the option women are given by their doctor. Endometriosis can be surgically removed and if there is already too much resulting scar tissue and adhesions from long standing disease, the latest data in the literature suggests that endometriosis does not affect the outcome of IVF. If there is pain and pregnancy can be postponed, there are very effective medical therapies that will alleviate the pain and "buy time".
If your doctor has advised you that surgery is necessary and you are planning to have a baby now or in the future, be sure to ask a lot of questions. If the word "hysterectomy" is discussed or even brought up, get out. This includes the way they plan to perform the surgery. Do they use microsurgical techniques? How many of these surgeries have they done? What is their complication and success rate? Are they the best qualified to perform this type of surgery? And most importantly, you should be asking if this particular surgery can affect your future fertility. In my experience, sometimes gynecologic surgeries performed by excellent surgeons can unknowingly result in future difficulties with conception. In many cases, when fertility preservation is important, it may well be worth seeking a second opinion.
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