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First of all, I want to express my thanks to each one of you that has visited my page.
I hope by making this site, that I can help others who suffer from this disease and
educate those who are just being diagnosed with it. Also, I want to thank my family
for standing by me and helping me through this disease. Hopefully with all the information
that we find everyday on endo, soon there will be a cure. Until then, you have me as
your friend to help you through the rough times. Please read each page because there
is some very educational things in this site. Also, if you have anything that you would like
to see added to this site, or maybe you need a shoulder to cry on, feel free to email me, and let me
know what you think.
I'm going to start off with some background information on endo and some other neat little tidbits. So sit back, grab your heating pad and pain pills and let's enjoy. :)
Endometriosis is a disease which affects over 5 million women and girls worldwide, with millions more worldwide. It is often dismissed by health care providers and society, due to the lack of knowledge and awareness surrounding the disease.
There is no cure for Endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it.
Outlined below is an brief overview of Endometriosis, possible symptoms which might lead you to suspect you may be suffering from the disease, and common treatment measures.
Endometriosis is a disease in which tissue like the endometrium (the tissue that lines the inside of the uterus which builds up and is shed each month during menstruation) is found outside the uterus, in other areas of the body. These implants still respond to hormonal commands each month, and break down and bleed. However, unlike the lining of the uterus, the tissue has no way of leaving the body. The result is internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue. In addition, interference with bowel, bladder, intestines and/or other areas of the pelvic cavity can occur. While uncommon, Endometriosis has also been found lodged in the skin and even the brain. There is no cure for Endometriosis.
Endometriosis is a puzzling disease affecting women in their reproductive years. The name comes from the word "endometrium," which is the tissue that lines the inside of the uterus and builds up and sheds each month in the menstrual cycle. In endometriosis, tissue I like the endometrium is found outside the uterus, in other areas of the body. In these locations outside the uterus, the endometrial tissue develops into what are called "nodules," "tumors," "lesions," "implants," or "growths." These growths can cause pain, infertility, and other problems.
The most common locations of endometrial growths are in the abdomen_involving the ligaments supporting the uterus, the area between the vagina and the rectum, the outer surface of the uterus, and the lining of the pelvic cavity. Sometimes the growths are also found in abdominal surgery scars, on the intestines or in the rectum, on the bladder, vagina, cervix, and vulva (external genitals).
Endometrial growths have also been found outside the abdomen, in the lung, arm, thigh, and other locations, but these are uncommon. Endometrial growths are generally not malignant or cancerous_they are a normal type of tissue outside the normal location. (However, in recent decades there has been an increased frequency of malignancy occurring or being recognized in conjunction with endometriosis.) Like the lining of the uterus, endometrial growths usually respond to the hormones of the menstrual cycle. They build up tissue each month, break down, and cause bleeding.
However, unlike the lining of the uterus, endometrial tissue outside the uterus has no way of leaving the body. The result is internal bleeding, degeneration of the blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue. Other complications, depending on the location of the growths, can be rupture of growths (which can spread endometriosis to new areas), the formation of adhesions, intestinal bleeding or obstruction (if the growths are in or near the intestines), interference with bladder function (if the growths are on or in the bladder), and other problems. Symptoms seem to worsen with time, though cycles of remission and reoccurrence are the pattern in some cases.
There are several theories, none of which have been proven. Following is just a sample of common ones.
There are many other theories being investigated. Some believe that it may actually be "a combination of several factors."
The cause of endometriosis is not known. A number of theories have been advanced but no one of them seems to account for all cases. One theory is the retrograde menstruation or transtubal migration theory_that during menstruation some of the menstrual tissue backs up through the fallopian tubes, implants in the abdomen, and grows. Some experts on endometriosis believe all women experience some menstrual tissue backup and that an immune system problem and/or hormonal problem allows this tissue to take root and grow in women who develop endometriosis. Another theory suggests that the endometrial tissue is distributed from the uterus to other parts of the body through the Iymph system or the blood system. A genetic theory suggests that it may be carried in the genes of certain families or that certain families may have predisposing factors to endometriosis.
Another theory suggests that remnants of tissue from when the woman was an embryo may later develop into endometriosis or that some adult tissues retain the ability they had in the embryo stage to transform into reproductive tissue under certain circumstances. Surgical transplantation has also been cited as a cause in cases where endometriosis is found in abdominal surgery scars, although it has also been found in such scars when direct accidental implantation seems unlikely. Other theories are being developed by the Association and others researching endometriosis.
The amount of pain associated with the disease is not related to the extent or size of the implants. Some women with Endo have no symptoms, others have debilitating pain and even infertility. Some signs that may lead you to suspect Endo include - but are by no means limited to - any of the following:
The most common symptoms of endometriosis are pain before and during periods (usually worse than "normal" menstrual cramps), during or after sexual activity, infertility, and heavy or irregular bleeding. Other symptoms may include fatigue; painful bowel movements with periods; lower back pain with periods; diarrhea and/or constipation and other intestinal upset with periods Some women with endometriosis have no symptoms. Infertility affects about 30-40% of women with endometriosis and is a common result with progression of the disease.
Remember, it is quite possible to have some, all, or none of these symptoms.
Because Endo symptoms are so inconsistent and nonspecific, it can easily masquerade as several other conditions. These include: adenomyosis ("Endometriosis Interna"), appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID.
The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy.
The most effective thing an Endo patient can do is to find a specialist who treats the disease, such as an experienced gynecologist with a history of treating Endo patients, or if infertility is a concern, a reproductive endocrinologist. Form a partnership with this professional, in which you make informed decisions regarding your treatment plan together. Endo is a serious disease which requires serious treatment.
Any stand-alone or combination estrogen/progesterone oral contraceptive recommended by your doctor. Other patients have opted for less-traditional approaches to their treatment, such as alternative medicine, acupuncture, herbal therapy, massage techniques, and dietary measures. While not a cure for the disease, exercise (as indicated and advised under the guidance of a trained professional who is familiar with your condition), good nutrition, and adopting a generally healthy lifestyle may significantly improve symptoms.
No. At this time, there is no cure for this disease.
Hysterectomy may provide pain relief for many women. However, it is not a definitive cure for the disease, and many women still have problems with Endo that was left behind in the body. Additionally, HRT often prescribed post-hysterectomy raises some issues for some patients. As for pregnancy, many women with Endo have certainly been able to get pregnant and carry to term, though approximately 30-40% of women with Endo may experience problems with infertility. Some of women who have achieved pregnancy reported short-term relief from monthly cramps during the pregnancy; others have had no relief at all. In many cases discussed, the Endo returned "in full force" after the pregnancy.
Diagnosis of endometriosis is generally considered uncertain until proven by laparoscopy. Laparoscopy is a minor surgical procedure done under anesthesia in which the patient's abdomen is distended with carbon dioxide gas to make the organs easier to see and a laparoscope (a tube with a light in it) is inserted into a tiny incision in the abdomen. By moving the laparoscope around the abdomen, the surgeon can check the condition of the abdominal organs and see the endometrial implants, if care and thoroughness are used.
A doctor can often feel the endometrial implants upon palpation (pelvic examination by the doctor's hands), and symptoms will often indicate endometriosis, but medical textbooks indicate it is not good practice to treat this disease without confirmation of the diagnosis. Ovarian cancer sometimes has the same symptoms as endometriosis, and hormonal treatment (particularly estrogen), which is common in treating endometriosis, could cause a cancer to grow even faster. A laparoscopy also indicates the locations, extent, and size of the growths and may help the doctor and patient make better informed, long-range decisions about treatment and pregnancy.
Treatment for endometriosis has varied over the years but no sure cure has yet been found. Hysterectomy and removal of the ovaries has been considered a "definitive" cure, but Association research has found such a high rate of continuation/recurrence that women need to be aware of steps they can take to protect themselves. (Space does not allow us to detail these steps here - please see additional Association literature.) Painkillers are usually prescribed for the pain of endometriosis. Treatment with hormones aims to stop ovulation for as long as possible and can sometimes force endometriosis into remission during the time of treatment and sometimes for months or years afterwards. Hormonal treatments include estrogen and progesterone, progesterone alone, a testosterone derivative (danazol), and a new drug, GnRH, gonadotropin releasing hormone. Side effects are a problem for some women with all hormonal treatments.
Because pregnancy often causes a temporary remission of symptoms and because it is believed that infertility is more likely the longer the disease is present, women with endometriosis are often advised not to postpone pregnancy. However, there are numerous problems with the "Prescription" of pregnancy to treat endometriosis. The woman might not yet have made a decision about childbearing, certainly one of the most important decisions in life. she might not have critical elements in place to allow for childbearing and child bearing (partner, financial means, etc.). she may already be infertile.
Other factors may also make the pregnancy decision and experience harder. Women with endometriosis have higher rates of ectopic pregnancy and miscarriage and one study has found they have more difficult pregnancies and labors. Research also shows there are family links in endometriosis, increasing the risk of endometriosis and related health problems in the children of women with the disease.
Conservative surgery, either major or through the laparoscope, involving removal or destruction of the growths, is also done and can relieve symptoms and allow pregnancy to occur in some cases. As with other treatments, however, recurrences are common. Surgery through the laparoscope (called operative laparoscopy) is rapidly replacing major abdominal surgery in the U.S. and will probably also do so in other countries. In operative laparoscopy, surgery is carried out through the Iaparoscope using laser, cautery, or small surgical instruments. Radical surgery, involving hysterectomy and removal of all growths and the ovaries (to prevent further hormonal stimulation) becomes necessary in cases of long-standing, troublesome endometriosis.
Menopause also generally ends the activity of mild or moderate endometriosis. Even after radical surgery or menopause, however, a severe case of endometriosis can be reactivated by estrogen replacement therapy or continued hormone production after menopause. Some authorities suggest no replacement hormone be given for a short period (3-9 months) after hysterectomy and removal of the ovaries for endometriosis.
Endometriosis is without question one of the most puzzling conditions that affect women. More is being learned about it as time goes on and this knowledge is dispelling some of the assumptions of the past which now have been disproven or are suspect. One of these past assumptions was that nonwhite women did not generally get endometriosis. This has now been shown to be untrue_often nonwhite women in the past were not getting the kind of medical care to have endometriosis.
Another "myth" about endometriosis was that very young women did not get it_an idea that probably arose because formerly teenagers and younger women endured menstrual pain (often one of the early symptoms) in silence and did not get pelvic exams until the disease progressed to unbearable proportions. It was also believed in the past that endometriosis more often affected well-educated women. Now we know that this notion developed because well-educated women were those getting the best medical care and were more often persistent enough to obtain explanations for their symptoms.
Another assumption that has at times been made about endometriosis is that it is not a serious disease because it is not a killer like cancer, for instance. However, anyone who has talked with many women with endometriosis about their actual experiences with the condition soon learns that while some women's lives are relatively unaffected by it, especially in the early stages, too many others have suffered severe pain, emotional stress, have been unable to work or carry on normal activities at times, and have experienced financial and relationship problems because of the disease. Perhaps someday soon we will understand this perplexing disease and be able to end all the myths, pain, and frustrations that sometimes go with it!
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