What is Endometriosis?
I've done quite a bit of reading on Endometriosis, and what follows is a combination of things I've found on the 'Net,through information from my doctor's office and through personal experience.
According to the Endometriosis Association, the medical definition of endometriosis is: "Endometrium including both endometrial glands and stroma in an ectopic location".
In simple terms, it means that tissue similar to the lining of the uterus is found living outside the uterus. Both the endometrial glands and stroma cells have to be present for endometriosis to occur. Each month the uterus sheds its lining. The lining found on the outside of the uterus also sheds each month. But this flow has no where to go, so the body reacts by covering the raw area with scar tissue(adhesions). Since this happens each month, obviously the body builds up this scar tissue and adhesions more and more. If active endometriosis is trapped under the scar tissue, a lot of pain and pressure can result.
Endometriosis can also be referred to as lesions or implants. Most of the time it is found in the pelvic area, such as the uterus, ovaries, fallopian tubes, bowel and bladder. It can also attach to old scars, such as a scar from a cesarean. In very rare cases, it has been found in the lungs, kidneys and intestines.
Endometriosis affects 1 in 5 American women, and is the leading cause of infertility in the United States.
As far as the amount of pain goes, it varies for each woman. Some women can have level 4 endometriosis (severe) and have little or no pain, while others can have level 1 endometriosis (mild) and have debilitating pain. I can only speak from personal experience here. I have level 4 Endo and I have very severe pain. The cycle of this bleeding and scarring causes burning sensations in certain parts of my abdominal area, and especially around my cesarean scar. Other typical symptoms of endometriosis are heavy or irregular periods, pain during and after intercourse, severe cramps and pain during periods, urinary and/or bowel problems, miscarriages and infertility. (I have had all of these symptoms, even suffering a miscarriage two years ago and now finding out that I am infertile because of the Endo). Other symptoms that I have not read as much about include fatigue, mood swings, allergies, depression, and bloating or weight gain.
Theories About the Cause of Endometriosis
The one thing known for certain is that there is no known cure for endometriosis. There is only pain management and/or surgery, and neither one is a 100% guarantee cure.
How do you know if you have Endometriosis?
But pelvic exams does not 100% diagnose endometriosis. The only was to diagnose it is through an outpatient surgery called Laproscopy. It's a pretty simple surgery where a small incision is made, usually in the belly button (I actually had two incisions, one in my belly button, and one on the side of my abdomen). A Laproscope is then used to look at the pelvic area. Sometimes if the Endo is mild enough, it can be scraped away during this procedure. Other times it can be removed by laser, or by another surgery called a Laporotomy.
Treatments for Endometriosis
When symptoms are mild, a doctor and patient might use a 'wait and see' approach, to see if the symptoms stop on their own or get worse.
Some women may try pregnancy to get rid of endometriosis. While endometriosis may subside during pregnancy, it had been proven that in most cases it does come back after pregnancy. For some women, by the time they are diagnosed with endometriosis, it is already too last for pregnancy (as it was in my case).
Sometimes drug treatment can improve symptoms for some women. But please remember, drug treatment is not a cure - the Endo is still there, the drug treatments only mask the disease.
I was put on Lupron shots for six months. In effect, Lupron makes your body think it is going through menopause, and the endometriosis will stop growing, and sometimes will even soften and dissolve. I have heard and read a lot of bad things concerning Lupron and its side effects, but personally, I've felt great when I was on it. I had none of the side effects of Lupron, I had a bit more energy, hardly any pain, and the best - no period for six months! Unfortunately, a person can't be on Lupron forever (and it's also very expensive, I thank God I had medical insurance), and after the last shot wore off, I found myself in worse shape than before, so obviously the Lupron did not dissolve or soften enough of the tissue.
Sometime oral contraceptives are used to control periods and pain. Again, this may work in some women and not for some others. For me, it did neither. I had terrible pains and terrible periods. But I have heard of some women who felt much better being on "The Pill".
If drugs don't work at all, then sometimes surgery is considered. There are different levels of surgery for Endo, depending on the severity.
Conservative surgery removes the endometriosis while keeping all organs intact, maintaining fertility. This should be considered for women not totally infertile yet who still want to get pregnant. Although it removes the endometriosis, it isn't a guarantee that the Endo won't come back. As long as your body goes through a monthly cycle, the endometriosis can come back.
Sometimes more radical surgery needs to be done. This would be for women who cannot bear children any more or who do not want any more children, and for women who's daily lives are filled with pain that cannot be controlled any other way. Radical surgery involves removing the reproductive organs. This may help many women, but if there are Endo implants in other parts of the body not found previously, these may still cause pain and may need to be removed when found.
Each woman must give much thought and be very open with their doctor and partner with the type of treatment they want. If your doctor wants to try a certain treatment, and you are wary, speak up. It's your body, and you have the choice of what to do with it.
Hopefully one day there will be a cure for this disease. Although, even though I have a severe case and have much pain, I know it won't kill me, so I hope there is a cure for cancer, AIDS and Leukemia first.
Please email me with your thoughts and comments
Chris' Endometriosis Page
Last Updated Novenber 18, 1999
Web Page by Chris Hill (ChrisHill14@excite.com)