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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, depending on the location of the growths, interference with bowel, bladder, intestines and/or other areas of the pelvic cavity can occur.
What causes endo?
The 2002 Endo Congress gave evidence that endo is genetic. However, why it appears in some women but not their relatives, or how it starts is not known.
There are several theories, none of which have been proven, including retrograde menstruation, heredity, genetic makeup, immunology, and endocrine disruptors like Dioxin. There are many other theories being investigated. Experts such as Dr. Albee believe that it may actually be "a combination of several factors."
What are some symptoms of endo?
The only way to positively diagnose endo is via surgery, either a laparotomy or the less-invasive laparoscopy. According to the Endo Sourcebook, "the amount of pain is not necessarily related to the extent or size of the implants". The book further goes on to note that "some women with endo have no symptoms". Some signs that may lead you and your healthcare provider to suspect endo include - but are by no means limited to - any of the following mentioned on the group frequently:
*chronic or intermittent pelvic pain
*dysmenorrhea (painful menstruation is not normal!)
*dyspareunia (pain during intercourse)
*pain after intercourse
*infertility- according to the Sourcebook, infertility affects "about 30-40% of women with endo and is a common result with the progression of the disease"
*miscarriage(s)
*ectopic (tubal) pregnancy
*backache
*nausea
*vomiting
*abdominal cramping
*diarrhea
*constipation
*painful bowel movements
*blood in stool or urine
*rectal bleeding
*tenderness around the kidneys
*painful or burning urination
*Fatigue, chronic pain, and allergies and other immune system-related problems are also commonly reported complaints of women who have endo.
Will a sonogram (ultrasound) show whether I have endo?
No. A sonogram might give indications to make a doctor suspect endo, such as cysts or fibroids. The disease itself cannot be diagnosed with a sonogram, CAT scan, MRI or other diagnostic procedure. As MRIs become more powerful, they are becoming a more popular diagnostic tool, especially to find deep-seated, hidden endo.
What causes the delay in diagnosis of the disease?
Our group constantly posts reports of how the medical community ignores their complaints. They have been told, in spite of the fact that they actually do have the disease, statements such as "you sound like you've got a urinary tract/bladder infection"; "cramping with periods is normal, take some over-the-counter meds"; "you've got IBS (the catch-all diagnosis for bowel complications)"; sounds like PID (pelvic inflammatory disease)"; and the all-too-common "you're imagining it". Some women have actually been sent to the pyschologist for counselling rather than to the operating room for needed surgery - the fact of the matter is, it's in your pelvis, not in your head!
"Living with Endometriosis" reports that because endo symptoms are so inconsistent and nonspecific, it can easily masquerade as several other conditions. These include: adenomyosis, appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID.
Your best bet 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 endocronologist. Endo is a serious disease which requires serious treatment. In order to find a good doctor, you can check with the group for references or check with the Endometriosis Association and the Endometriosis Research Center. WITSENDO no longer publishes their list of "Popular Docs" but you should feel free to ask that listserve for references as well.
What is the cure for endo?
Currently, there is no cure. It can be, however, medically and surgically managed.
How is it treated?
Many members are undergoing varying methods of treatment. This includes surgical and medical measures. It is extremely important to find an experienced surgeon and if possible, check to see if your surgeon will have consulting surgeons on hand to deal with possible GI or urinary tract involvement, such as a gyno-urologist or gastroenterologist. Many gyn surgeons will not touch those areas and they are often better left to the doctors who are specific to that field.
Common meds discussed on the group frequently are:
Depo-Provera (injection)
Danocrine/Danazol (oral)
Synarel (nasal spray)
Leuprolide Depot - commonly known as Lupron or Prostap (intramuscular injection)
Zoladex (subcutaneous implant)
various birth control pills
The group also discusses from time to time other methods such as herbs, diet, acupuncture and similar methods. While not a cure, a healthy lifestyle can only help.
Aren't hysterectomies or pregnancies the cure?!
No! Hysterectomy will provide pain relief for many women. However, it is not a definitive cure for the disease, and many women in the group still have problems with endo that was left behind in the pelvic cavity. This topic is discussed frequently on the group.
As for pregnancy, many women in the group have been able to get pregnant and carry to term. Some report 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.
Is there a suggested reading list?
The group often suggests and refers to the following publications, among many others:
"Overcoming Endometriosis" by Mary Lou Ballweg and the Endo Association
"The Endometriosis Sourcebook" by Mary Lou Ballweg and the Endo Association
"Coping with Endomtriosis" by Jo Mears
"Coping with Endometriosis" by Glenda Motta, RN, MPH, ET & Robert Phillips, PhD.
"Living with Endometriosis" by Kate Weinstein (Addison Wesley).
"Endometriosis: A Key to Healing Through Nutrition" by Dian Mills
All are available at your local library or bookstore.
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