FAQ Endometriosis General Information

Frequently Asked Questions about Endometriosis

an alt.med.endometriosis FAQ

revised April 27, 2000



Copyright © 1998, 2000 Susan Strandskov



The purpose of this FAQ is not to discourage questions and

discussion, but to provide a basic overview.  Much is NOT

known about endometriosis, and there are many different

viewpoints which are better discussed at length on the

newsgroup.  Information provided here is intended only as

a quick briefing, not the definitive answer.



Information contained here draws from the writings of various

physicians, the writings of non-profit organizations, and the

experiences of women who have endometriosis.  However, it is

not -- and should not be substituted for -- medical advice.









>What is endometriosis?



Endometriosis is characterized by cells which resemble the lining

of the uterus (the "endometrium") which are found growing in places

other than where the lining of the uterus belongs.  This may cause

pain, and brings the risk of infertility.





>What causes endometriosis?



Nobody knows for sure.



One of the oldest theories on the cause of endometriosis is

"Sampson's theory" which is that menstrual blood containing cells

from the lining of the uterus escapes through the fallopian tubes

and sticks to other places in the pelvis.



Some say endometriosis has a genetic basis.



Others say that an immune system dysfunction is involved.



Some say endometriosis travels through the lymph system.



Others say that the cells form in the wrong place when we are

embryos.



Some say endometriosis is the result of the body’s reaction to

environmental toxins.



NONE of these theories have been proven.



There are many other theories under investigation.  The actual

cause may turn out to be a combination of several factors.





>How do I know if I have endometriosis?



Sometimes women have endometriosis with no symptoms at all.  Others

have excruciating pain.  Endometriosis is a likely suspect when

pelvic pain is present, but the only way to know for sure is surgery.

And, if the endometriosis lesions are very small, it may take an

excellent surgeon to find them.





>Won't a sonogram show whether I have endometriosis?



No.  A sonogram might give indications to make a doctor suspect

endometriosis, such as cysts on the ovaries.  But endometriosis

cannot be diagnosed with a sonogram.





>My doctor doctor doesn't seem to take my complaints

>seriously.  Could I still have endometriosis?



Women who actually have severe endometriosis in need of treatment

have heard the following comments from medical personnel:



- "Cramps" are normal; there's nothing wrong with you.  Take two

Advil every four hours.

- You need to look at the reasons for your "pain." Perhaps you're

avoiding sex with your husband / boyfriend.

- Sounds like irritable bowel syndrome.

- Sounds like appendicitis.

- You're not in that much pain.  You don't need narcotics.  Take

two Advil every six hours.

- Have a baby.  That'll cure your endometriosis.

- I don't see anything in the transvaginal ultrasound.  There's

nothing wrong in there.  Are you having trouble at work?

- You need to see a counselor, not a surgeon.  Have you tried

antidepressants like Prozac or Zoloft?



Unfortunately, it can be a struggle to find a doctor who will

take endometriosis symptoms seriously.





>What kind of doctor / specialist treats endometriosis?



Gynecology is the specialty which addresses endometriosis.  If you

are looking for a new doctor, you might want to look for a doctor

who lists his practice as "Gynecology" rather than "Obstetrics and

Gynecology" (OBGYN) because OBGYNs are sometimes -- not always --

so busy delivering babies that they find it difficult to take time

for a patient who has a chronic health problem.  Also, a

"Reproductive Endocrinologist" is a gynecologist with additional

training in matters relating to fertility and hormones.  An "RE"

would be an especially appropriate doctor to see if you are trying

to get pregnant.



The gynecologist may find it necessary for you to consult

additional specialists, such as a general surgeon, urologist

or bowel specialist, depending on the location of your

endometriosis.





>How do I find a good doctor?



Contact The Endometriosis Research Center for suggestions which might

help with your search, read Endometriosis Association newsletters to

learn about the work of experts in the field, and check with local

chapters of the Endometriosis Association (and Resolve, if

infertility is an issue) and ask for suggestions.





>What is Resolve?



Resolve is a support organization for infertile couples.  They

maintain a physician listing, but these doctors are not screened

other than for appropriate licencing.  These doctors believe

themselves to be knowledgeable about infertility, but they may or

may not be knowledgeable about endometriosis.  There is a

membership fee to join Resolve.



Resolve

1310 Broadway

Somerville, MA  02114-1731



617-623-1156



Internet web site:

http://www.resolve.org





>What is the cure for endometriosis?



There is no cure.  Sorry, that's not good news.  But there are

treatments to reduce the symptoms and pain.



Doctors sometimes discuss the "cure rate" of a particular procedure

as a measure of its effectiveness during a particular time frame,

and while this provides useful information it unfortunately confuses

the issue. There is no treatment at present which can be guaranteed

to permanently eradicate endometriosis and eliminate its effects.



A few surgeons, who focus exclusively on endometriosis treatment,

report that around 80% of their patients still have satisfactory

pain relief after five years, based on standard statistical

analysis procedures.  It is important to determine whether such

a claim is supported by published documentation which has been

reviewed by other professionals.  No comparable success rates have

been reported for the hormone suppressive medications.





>How is endometriosis treated?



Surgery can be done.  A good endometriosis surgeon will search

carefully, and thoroughly remove all the endometriosis lesions he

can find.  But be aware that not all surgeons have equal skills,

and even excellent surgeons may miss a few spots in this kind of

tedious surgery.  It's important to find an excellent endometriosis

surgeon.



There are medications which are often used to suppress hormone

levels in an attempt to shrink the endometriosis implants.  The

course of treatment is usually six months.  The common medications

are:



depo-provera (injection)

danocrine (oral medication)

synarel   (nasal spray)

lupron    (injection)

zoladex   (subcutaneous implant)



There are pros and cons to this kind of treatment.



Doctors often prescribe birth-control pills as a first line of

defense.  This may help for a time, but be aware that more intensive

treatment may be needed later.



Other treatments are being used, as well, such as immunotherapy,

and more are under investigation.  Feel free to ask the group about

specific treatments or new developments you are interested in.





>What about self-help measures?



Endometriosis is a serious medical problem and should be treated as

such.  However, it can be very helpful to integrate healthy lifestyle

practices with specific treatment.  Rest, exercise and a diet of

healthy, nutritious food can help.



Some other self-help measures that have been suggested:

Avoid pesticides and other chemicals.  Be aware of chemicals in

food, and avoid eating a lot of things that have been pre-packaged,

processed and preserved.  Don't allow meat and milk products to

fill up an excessive portion of your daily food intake.





>Isn't hysterectomy the cure for endometriosis?



Hysterectomy will put an end to menstrual cramps, and provides pain

relief for many women.  But, when the uterus is removed,

endometriosis is frequently left behind in other locations in

the pelvis.  The endometriosis that is left can continue to cause

problems.  Many women have problems with post-hysterectomy

endometriosis.





>But my doctor said the endometriosis will

>go away when I get pregnant.



The symptoms might stop while you are pregnant.  (Then again, they

might not.)  Menstrual cramps might be reduced afterwards.  But the

symptoms of endometriosis are likely to return soon after delivery.



Many women have had children and still have trouble with

endometriosis.



Some have not been able to get pregnant.  Endometriosis can

cause infertility.





>Does endometriosis always cause infertility?



No.  Probably fewer than 40 percent of women with endometriosis

are infertile.  But infertility problems can increase over time

and as the endometriosis causes more damage.





>Is endometriosis a new disease?



Endometriosis was given its present name in the 1920's, but

certainly was in existence long before then.



The Endometriosis Association was founded in 1980.





>Is anyone doing any studies on endometriosis?



Yes.  Two good sources of information on current research and

treatment are The Endometriosis Research Center and the

Endometriosis Association.



>How do I get in touch with The Endometriosis Research Center?





The Endometriosis Research Center

751 Park of Commerce Drive, Suite 130

Boca Raton, Florida 33487



Phone: (561) 988-0767

Toll Free (800) 239-7280



Internet web site:

http://www.endocenter.org





>How do I get in touch with the Endometriosis Association?



Endometriosis Association

8585 North 76th Place

Milwaukee, WI  53223



Phone toll free:  1-800-992-3636

(recorded message - leave your address to get an information packet)



Internet web site:

http://www.EndometriosisAssn.org/

There is a membership fee.





>This is all new to me and I don't even know

>what questions I should ask!



Two excellent books are available, both

by Mary Lou Ballweg and the Endometriosis Association.



Overcoming Endometriosis

was published in 1987 by Congdon & Weed, Chicago.



The Endometriosis Sourcebook

was published in 1995 by Contemporary Books, Inc., Chicago.



The Sourcebook is presently available in most large bookstores.

Both books can also be obtained from the Endometriosis Association.





>What are these code-words and acronyms you are using?



adenomyosis = a different form of endometriosis, in which

endometrial tissue is found in the muscle wall of the uterus.



adhesions = tissue which binds surfaces together.  Usually refers

to scar tissue from surgery which binds together internal organs.

Adhesions may cause pain, necessitating surgery to remove the

adhesions.



endo = endometriosis



HSG = hysterosalpingogram.  An x-ray of the uterus and fallopian

tubes.  Is used to look for blockages, polyps and fibroid tumors.



hysterectomy = surgical removal of the uterus.  An oophorectomy

(removal of the ovaries) may or may not be done with a hysterectomy.



IBS = irritable bowel syndrome, often a symptom of endometriosis



laparoscopy = "lap," "belly-button surgery" or a "scope" is used

to diagnose and surgically treat endometriosis.  Involves small

incisions, one of which is placed in the belly-button.  Not to be

confused with laparotomy, which involves a large incision and may

be necessary to treat severe cases.



laparotomy = surgery involving a large incision which is usually

placed along the "bikini line" or the top of the pubic hair.

Involves a longer recovery time than laparoscopy, and is usually

reserved for severe cases.  (Doctors sometimes refer to laparotomy

as a lap, so be sure you know which one the doctor plans to do!)



oophorectomy = surgical removal of the ovaries.  Often done at the

same time as hysterectomy.  If both ovaries are removed, this is a

"bilateral oophorectomy."



sono = sonogram.  Does not usually show endometriosis, but may

identify cysts and other problems.







FAQ is for general information purposes and

does not constitute medical advice.



Some material contained in this document previously appeared

in another copyrighted document, an FAQ

Compiled by Susan Strandskov, August 1997

with input from Erica, Tamar, Heather,

and the members of alt.support.endometriosis

Copyright 1997 Susan Strandskov







An alt.med.endometriosis FAQ

Compiled January 1998

by Susan Strandskov with input from Erica Rex

Copyright © 1998, 2000 Susan Strandskov

All Rights Reserved.

Please do not copy this material for use elsewhere

without express permission.