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Frequently Asked Questions (FAQs) | Anne's Laparoscopy Tips
alt.support.endometriosis
Frequently Asked Questions (FAQs)

This page is provided as a courtesy. Site owner is not responsible for content. Please contact alt.support.endometriosis directly by visiting your newsgroup reader to ask questions or make suggestions concerning this document. Thank you.
Important: Please remember, this FAQ is for general information purposes only. It does not constitute medical advice.

What are the "rules" of alt.support.endo?
There are none - other than all participants must be respectful of each other!

Who is welcome to join the group?
All women who have endo, think they have endo, or need information are welcome. In addition, their significant others and family members are certainly welcome and encouraged to join in the discussions. We always welcome accredited physicians and professionals to participate where they can, and certainly anyone who has legitimate interests in learning more about the disease is always welcome.

Who is not welcome?
"Snake oil" salesmen, predators who wish only to prey on unsuspecting women in pain to sell their "cures" to, are not welcome. Ever. If you are a newbie, and someone contacts you off-list to tell you the story of how they "found a cure", ignore it. Post to the group about any mail you receive off-list to ensure that it comes from a valid source. There are several long-standing members of the group who can tell you if a contact is legitimate. Many are not.

Are there any message classifications?
There are no "official classifications", as such, but we have recently adopted a new system of prefacing our messages with certain keywords to alert members to subject topics. Some posts tend to be sensitive in nature, and this will enable members to skip posts they might be sensitive to. Likewise, it will enable everyone to pick out posts which are more applicable to them on a particular day. This is not a rule, but rather a courtesy. Here are some headers:

INFERT: Infertility mentioned. Many people are hoping for pregnancy success stories and this will help them avoid this issue.
M/C: Miscarriage mentioned. A particularly sensitive issue which can be triggering for some members.
EMBAR: Embarrasing topic. This will spare some people some inadvertant hurt feelings on difficult subjects. This can include anything sensitive from sex to kidney or bowel discussions, for example.
PG: Pregnancy. This is used to help avoid pregnancy discussions by those who are dealing with infertility, a very real and painful aspect of living with endo.
VENT or RANT: Self-explanatory. This is sometimes used by members to alert the group to the fact that they are in need of some support.
GRAPHIC: Graphic descriptions. Used out of courtesy so those who are weak-stomached, already feeling ill, suffering morning sickness, etc. can be warned not to upset their tummies anymore at the time. Typically used for any "gross out" discussions.

Use your imagination for any subject header you'd like to use! Again, these are not rules, and no one who fails to use a header will be flamed. It is strictly as a courtesy to others in the group.

What are "Surgery Stars"?
These are our sisters on ASE who are scheduled for upcoming procedures. Please post to the group with your name, type of procedure, surgery date, and if you'd like, the location where your surgery is being done. The list is not limited just to those who are having laps or similar surgeries; it is for all sisters who are having diagnostics done as well, such as IVPs, colonoscopies, etc. Remember to post your information!

What is endometriosis?
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.

Why call it "endo"?
"Endometriosis" (en-doe-me-tree-oh-sis) is too long a word to keep retyping - and it is far easier to say for those new to, or unfamiliar with the disease.

What causes endo?
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.

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 counseling 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 WITSENDO?
How do I subscribe? How do I UN-subscribe?
Witsendo ("we are interested in the treatment and support of women with endo") is a moderated listserve for women with endo (and their loved ones). A high volume of email is distributed weekly to the subscriber list, addressing all aspects of the disease. To subscribe, send an email to:
LISTSERV@LISTSERV.DARTMOUTH.EDU
with the message: SUBSCRIBE WITSENDO your full name
(obviously, substitute your own name) in the body of the mail. Do not include anything else, as the Listserv computer will read it as a command. If you must include a subject, simply put "SUBSCRIBE" in the line. For leaving the list: same procedure, with the message: SIGNOFF WITSENDO your full name. Witsendo mail can be very high in volume. Once you have joined, you can learn how to sign up to get the messages in digest format rather than individual emails.

Are there any other email support groups?
The ERc has an active, moderated list at
www.groups.yahoo.com/group/erc
There is a similar group for british women at
www.groups.yahoo.com/group/endouk
There are many such groups at yahoo, webMD and other places

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.

How do I join the Endometriosis Research Center?
Send a self-addressed, stamped envelope with your name and mailing address to:
The Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444
Phone: Toll Free (800) 239-7280
www.endocenter.org
There is never a membership fee and materials are available for the cost of postage.

How do I join the Endometriosis Association?
Endometriosis Association International Headquarters
8585 North 76th Place
Milwaukee, WI 53223
phone 1-800-992-3636
www.endometriosisassn.org
There is a membership fee and costs for materials.

In England?
National Endometriosis Society
50 Westminster Palace Gardens
Artillery Row
London
SW1P 1RL
www.endo.org.uk

Australia?
http://www.endometriosis.org.au/

New Zealand?
http://www.nzendo.co.nz/

Other countries? Post an address to ASE and we can add the information here!

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 (Congdon & Weed, Chicago)
"The Endometriosis Sourcebook", also by Mary Lou Ballweg and the Endo Association (Contemporary Books,)
"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). All are available at your local library or bookstore.