What is Endo?

WHAT IS ENDOMETRIOSIS?


I have lived the most part of my life with a disease called, ENDOMETRIOSIS, also called 'Endo', many have heard of this disease, but not many have a good understanding of it, this includes the women suffering from it, doctors, or the general public. Much needs to be done to get information about this disease out there so more people have an accurate and better understanding of what it is, and what the diagnosed woman is going through.

It is now a common disease found in women, one study indicates it may effect about 7% of reproductive-aged women or approximately 5 million American women alone. It can occur to any woman regardless of age, ( after puberty), childbearing history, or race. Some women may have any stage of endo and not even know they have it as they feel no pain at all, some may feel little pain yet others may find it painful to severely painful and debilitating.Endo is an enigma and the levels and degree that one women will feel vs another's makes it hard for others and even some Doctors to take it seriously or be attentive to it.

No one knows for certain what causes it, and there is no cure. Treatments are available, but for the most part, only temporary, it does come back, treatments range from surgeries to medications, but most medications have their own undesirable side effects, sometimes also severe and debilitating and may last for years and possibly a lifetime.

Endo is surrounded in myths, it is unfortunate that some doctors not fully educated in endo also believe and pass along these myths, some include,
* Endo is not painful, it is in the womans head, it is a psychological issue that counseling/anti-depressants/change of circumstances would cure.
* Endo is used by some women to gain sympathy or use for attention.
*

This is the definition of this disease, ENDOMETRIOSIS, also referred to as , ENDO.

Endometriosis is a noncancerous disease in which pieces of the lining of the uterus , ( called, "endometrial" lining)- grow outside the uterus. These pieces of the lining implant themselves and attach to other places outside the womb, they can implant on the outside of the uterus, Fallopian tubes, ovary's, bladder, bowel, intestines, muscles. It can migrate even further to many other parts of the body like the kidney, although rare, endo can be found on the skin, in scars, ( in abdomen through accidental placement of endometrial cells through C-section surgeries, or abdominal surgeries, lung, and even the brain, endo can migrate and attach almost anywhere.
When endo is found inside the uterine muscle, it is called adenomyosis, this too is extremely painful and causes many concerns, and can present themselves like fibroids. Endo has also been found in men, although rare.

There are a few theory's as to what causes endo, some research suggests the cells to the uterine lining are mistaking implanted in other places inutero,( while we are growing in our mothers womb), then grow to maturity and begin to cause problems sometime after when we reach puberty. Another theory is retrograde bleeding, where the lining/cells, are backed up through the Fallopian tubes and spill out into the abdominal cavity during mensis, tampon use, or by other means. Other theory's suggest an immune disorder, toxic and environmental poisonings, such as dioxins found in disposable diapers, pads and tampons made of materials other than natural unbleached cotton. In a well known study Reesis monkeys received dioxins and later were diagnosed with endo. There are many theory's, none which have been proved absolute.
There seems there can be a hereditary component as it is seen to run in families, more research still needs to be done.

Treatments are few, and none cure, some offer temporary relief, these may include;

*surgeries to remove found implants, often this often is only temporary as it may be nearly impossible to get every implant as they can be anywhere, hide under organs and muscles, and come in various color and sizes making it hard if not impossible to find, so what is left still cause issues, or it can come back.
*Another option may be GnRH class drugs, these stop the production of estrogen, which endo feeds off of. This offers only temporary relief and carries the risk of causing many, life long severe health issues, and once these drugs are stopped, most always endo comes back within 6 months to 2 years.
* Birth control pills, used to regulate one's cycles or stop them all together through continuous use.
* Other newer treatments in research stages.

Endo research is being done, but we, the suffering NEED to see it brought more out into the open, such as media, education, talks in schools and teaching more Dr's and the medical community, so more research dollars can be spent in research and finding new, SAFER, treatment options. MUCH more time and money need also be put into researching to see if it may be caused by toxins found in our products, water, chemicals, and/or from other places, everything must be considered.

If you are having painful periods, while slight discomfort is normal, severe pain, pain with intercourse, during voiding, and especially during the 2 weeks to, and the time of your period, you may have Endometriosis, it is best for your health and state of mind to bring this up with a doctor and be checked out. If you get nowhere with your doctor, please consider this, while it is HIGHLY unfortunate, there are still many myths attached to endo, such as women whining about their periods, being hysterical, looking for attention, etc....If you truly have pain, YOUR PAIN IS REAL. Many women find because of the stereotypes, they have a hard time getting their Dr's to listen, PLEASE KEEP TRYING! Some women have seen MANY MANY Dr's before getting one willing to go further in finding a diagnosis. The ONLY DEFINITE way to get an absolute diagnosis of endo, is through a laparoscopy, ( small incision through the belly button where a small scope is inserted to see your insides), or a laparotomy, (full abdominal incision to view the inside of your pelvic area and organs). Other tests such as ultrasound cannot confirm this disease!

These procedures are the ONLY way to a definitive diagnosis.

If you think, or know you have endo, and you need someone to talk to, there are MANY resources, such as online support groups filled with women suffering from this disease, all are more than willing to offer their support, or information to lead you to a diagnosis and support you in your journey.

I have 2 such groups that I have started and 1 more I co- support on that I am a very proud part of, offering my 25+ years of living with Endo with many other new or knowledgeable women. You can find many on the net, or you may try mine listed below.

This blog offers to you, my life journey through endo, my thoughts, life, treatments, ideas, things I have found help some, help the most, or were a waist of time, money and pain for me. It is a journal of hope, and faith that I can live with, and through this disease that has affected every aspect of my life, and millions of others.

I hope in your reading it comes to help you, educate, and make you feel you are not alone in your struggle.

Health"n"Healing,

Moonfire AKA, AdminLady.

SUPPORT GROUPS

Endo Lights
Offers ALL stages of sufferers, both diagnosed,
and undiagnosed but searching for information,
A safe, non-judgmental place to come to, to find support &
friendships, but most of all share life with endo and learn
in the most positive light.
BE AN ENDO LIGHT, AND KEEP IT OUT OF THE DARKNESS!
EndoLights-Support@yahoogrpups.com
ALL stages, both diagnosed and
undiagnosed, but searching to learn,
WELCOME!


Stage IV Plus Endo

A positive, and inspiring forum for those of us
who are deemed stage IV and end stage, or/and inoperable.
This is a forum for us who have suffered through so many treatments
surgeries and disappointments and now must face living
with this disease to the best of our ability's.
In finding positive approaches, inspiration, education,
and still seeking new research and hope......
This is the place for us to gather our strength and share
lives and possibilities in a positive light.

<stageivplusisus@yahoogroups.com>.
All stageIV+in-operable, welcome!




My Full Endo story is under October 07-06 post, you can find it to the right side drop down menu under PAST POSTS