I was recently diagnosed with Endometriosis, will I have this for the rest of my life?

Question:

Answers:
For free, current and accurate info on the disease, offered with no hidden agenda other than to support and educate patients, visit the Endometriosis Research Center @ www.endocenter.org. They also offer free access to the internet's largest electronic support group at http://groups.yahoo.com/group/erc, which has a TON of free educational information and materials in the files section of the group. Definitely consider joining today to speak with over 3000 others who understand. They offer ton of info about the surgical, medical and alternative options for treatment and "how to live well in spite of the disease." Also, I took this from their website at www.endocenter.org:

"About Endometriosis:

With Endometriosis, tissue like that which lines the uterus (the endometrium) is found outside the womb in other areas of the body. Normally, the endometrium is shed each month through menses; however, with Endometriosis, these implants have no way of leaving the body. The implants still break down and bleed, but result is far different than in women and girls without the disease: internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, and formation of scar tissue result. In addition, depending on the location of the growths, interference with the normal function of the bowel, bladder, intestines and other areas of the pelvic cavity can occur. Endometriosis has also been found lodged in the skin - and even the brain.

Symptoms include chronic or intermittent pelvic pain, dysmenorrhea (painful menstruation is not normal!), infertility, miscarriage(s), ectopic (tubal) pregnancy, dyspareunia (pain associated with intercourse), nausea / vomiting / abdominal cramping, diarrhea / constipation (particularly with menses), painful bowel movements, painful or burning urination, urinary frequency, retention, or urgency; fatigue, chronic pain, allergies and immune system-related illnesses are also commonly reported complaints of women who have Endo. It is quite possible to have some, all, or none of these symptoms. Endo symptoms are varied and often nonspecific, so they can easily masquerade as several other conditions, including adenomyosis ("Endometriosis Interna"), appendicitis, ovarian cysts, bowel obstructions, colon cancer, diverticulitis, ectopic pregnancy, fibroid tumors, gonorrhea, inflammatory bowel disease, irritable bowel syndrome, ovarian cancer, and PID.

Despite today's age of medical advances, researchers remain unsure as what causes of Endometriosis. There is NO CURE, despite the continued propagation of such myths by the uninformed who still mistakenly believe that hysterectomy, pregnancy and/or menopause can "cure" the disease. Invasive surgery remains the gold standard of diagnosis, and current therapies continue to remain extremely limited, often carrying side effects.

Mistakenly minimized as "painful periods," Endometriosis is more than just "killer cramps." It is a leading cause of female infertility, chronic pelvic pain and gynecologic surgery, and accounts for more than half of the 500,000 hysterectomies performed in the US annually. Despite being more prevalent than breast cancer, Endometriosis continues to be treated as an insignificant ailment. Recent studies have even shown an elevated risk of certain cancers and other serious illnesses in those with the disease, as well as malignant changes within the disease itself.

Research has shown that genetics, immune system dysfunction, and exposure to environmental toxins like Dioxin may all be contributing factors to the development of the disease. Endometriosis knows no racial or socioeconomic barriers, and can affect women ranging from adolescence to post-menopause. The disease can be so painful as to render a woman or teen unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. It can negatively affect every aspect of a woman's life; from her self-esteem and relationships, to her capacity to bear children, to her ability to be a contributing member of society.

The disease can currently only be diagnosed through invasive surgery, and the average delay in diagnosis is a staggering 9 years. A patient may seek the counsel of 5 or more physicians before her pain is adequately addressed.

Once diagnosed, it is not unusual for a patient to undergo several pelvic surgeries and embark on many different hormonal and medical therapies in an attempt to treat her symptoms. None of the current treatments are entirely effective, and virtually all synthetic therapies carry significantly negative side effects; some lasting far beyond cessation of therapy. The exception to this is excision; see www.centerforendo.com to learn more about excision as the leading treatment.

Though Endometriosis is one of the most prevalent illnesses affecting society today, awareness is sorely lacking and disease research continues to remain significantly under funded. For instance, in fiscal year 2000, the National Institutes of Health planned to spend $16.5 billion on research. Of that funding, only $2.7 million was earmarked for Endometriosis - amounting to approximately $.40/patient. This is in stark contrast to other illnesses such as Alzheimer's and Lupus, which received approximately $105.00 and $30.00 per patient, respectively. American businesses lose millions of dollars each year in lost productivity and work time because of Endometriosis. The cost of surgery required to diagnose the disease in each patient alone adds greatly to the financial burden of both consumers and companies alike.

Once erroneously believed to be a disease of “Caucasian career women who have delayed childbearing,” we know that in fact, Endometriosis affects women of all ages, races and
socioeconomic status. Endometriosis also can and does exist in the adolescent female population. Far from the “rare” incidence once believed, studies have found that as many as 70% of teenagers with chronic pelvic pain had Endometriosis proven by laparoscopy. Other reports indicate that as many as 41% of patients experienced Endometriosis pain as an adolescent. The illness can be quite disruptive and cause significant dysfunction, especially at a time in life when self-esteem, school attendance and performance, and social involvement are all critical. Many adolescents with Endometriosis find themselves unable to attend or participate in classes, social functions, extracurricular activities, and sports due to significant pain and other symptoms of Endometriosis. Sometimes, teens and young women lack support and validation from both the home and the school; told the pain is “in their head,” that they are “faking it,” that their debilitating cramps are “normal” and “a part of womanhood,” that they are merely suffering from “the curse,” or that they should just “grin and bear it.” Their symptoms may also be dismissed as a sexually transmitted disease, which Endometriosis absolutely is not. Failure to acknowledge and address symptoms early in the disease process can lead to significant delays in diagnosis and necessary, subsequent treatments. Lack of support from family and loved ones can also add to the patient’s pain and fear - at any age.

Recent studies have also shown that Endometriosis may in fact have an even bigger impact on younger patients than older women. One such study discovered that in patients under 22 years of age, the rate of disease recurrence was
double that of older women (35% versus 19%). The study also revealed that the disease behaves differently in
younger women; leading some researchers to believe it is a
different form of Endometriosis altogether. Surgery, considered necessary to accurately diagnose and
effectively treat the disease, is often withheld from younger patients based on the injudicious belief that early surgery somehow negatively influences a young woman’s fertility. Extensive, cumulative research has shown this concern to be unfounded. What can impact fertility, however,
is neglecting effective treatment of the disease. Some
researchers also feel that symptomatic, adolescent-onset
Endometriosis is most often a lifelong problem that will
progress to severe fibrotic disease.

While it is possible to become pregnant with Endometriosis, the key is to obtain early, effective treatment such as that offered by specialty treatment centers like the Center for Endo Care (see www.centerforendo.com to learn about the success of excision as treatment). Hysterectomy is not a cure for Endometriosis. Any disease left behind by the surgeon (whether by design because he or she 'couldn't get it all' or accident because they don't recognize the disease in all manifestations) will continue to thrive and cause pain and symptoms. It does not matter if the ovaries are removed or if HRT is withheld; Endo produces its own estrogen-synthesizing enzyme known as aromatase. Thus, it enables it's own vicious life cycle and sustains the disease process. You would be better off getting all disease truly excised from all locations at a specialty center like the CEC (www.centerforendo.com).

Due in part to the efforts of foundations like the ERC, research is ongoing in some places as to the causes of Endometriosis and potential cures for the disease. Our organization will continue to push for more widespread research into the many facets of the disease, and ultimately, a cure.

For more information:

http://www.endocenter.org/

Know the Facts:

- Endometriosis can affect women and teens of all ages, even those as young as 10 or as old as 85!
- Hysterectomy, menopause and pregnancy are NOT cures for Endometriosis; in fact, there is no definitive cure!
- Delayed childbearing is NOT what causes Endometriosis; in fact, no one really knows for sure what causes the disease, but research points to multi-factorial origins like heredity, immunology and exposure to environmental toxicants!
- Endometriosis can only be accurately diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive!
- GnRH therapies like Lupron should never be administered in those patients younger than 18 yrs. of age or before a surgical diagnosis!
- You CAN live well in spite of Endometriosis. WE ARE HERE TO HELP!"

I also recommend getting the book "Living Well With Endometriosis" by Kerry Ann Morris, which just came out last month. It's the best book on Endo that I ever read. You can get it on Amazon for cheap. Good luck to you and remember you're not alone!

Other Answers:
yes.. it can be treated and not really effect you depending on the severity though.

Currently, there is no cure for endometriosis although in most patients menopause (natural or surgical) will abate the process. Nevertheless, a hysterectomy or removal of the ovaries will not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back. However, endometriosis can be effectively managed in a large majority of patients. Conservative treatments usually try to address pain or infertility issues.

The treatments for endometriosis pain include:

NSAIDs and other pain medication: They often work quite well as they not only reduce pain but also menstrual flow. They are commonly used in conjunction with other therapy. For more severe cases narcotic prescription drugs may have to be used.
Gonadotrophin Releasing Hormone (GnRH) Agonist: These agents work by increasing the levels of GnRH. Consistent stimulation of the GnRH receptors results in downregulation. This causes a decrease in FSH and LH, thereby decreasing estrogen and testosterone levels
Hormone suppression therapy: This approach tries to reduce or eliminate menstrual flow and estrogen support. Typically, it needs to be done for several months or even years.
Progesterone or Progestins: Progesterone counteracts estrogen and inhibits the growth of the endometrium. Such therapy can reduce or eliminate menstruation in a controlled and reversible fashion. Progestins are chemical variants of natural progesterone.
Avoiding products with xenoestrogens, which have a similar effect to naturally produced estrogen and can increase growth of the endometrium.
Continuous birth control pills consists of the use of birth control pills without the use of placebo pills. This eliminates monthly bleeding episodes.
Danazol (Danocrine) and gestrinone are a suppressive steroids with some androgenic activity. Both agents inhibits the growth of endometriosis but their use remains limited as they may cause hirsutism. There has been some research done at Case Western Reserve University on a topical Danocrine, applied locally, which has not produced the hirsutism characteristics. The study has not yet been published in a medical journal.
Gonadotropin releasing hormone agonists (GnRH agonists) induce a profound hypoestrogenism by decreasing FSH and LH levels. While quite effective, they induce menopausal symptoms, and over time may lead to osteoporosis. To counteract such side effects some estrogen may have to be given back (add-back therapy).
Aromatase inhibitors are medications that block the formation of estrogen and have become of interest for researchers who are treating endometriosis.[5]
Surgical treatment is usually a good choice if endometriosis is extensive, or very painful. Surgical treatments range from minor to major surgical procedures.
Laparoscopy is very useful not only to diagnose endometriosis, but to treat it. With the use of scissors, cautery, lasers, hydrodissection, or a sonic scalpel, endometriotic tissue can be ablated or removed in an attempt to restore normal anatomy.
Laparotomy can be used for more extensive surgery either in attempt to restore normal anatomy, or at least preserve reproductive potential.
The definitive treatment for endometriosis is a total hysterectomy (removal of the uterus and surrounding tissue) and bilateral salpingoophorectomy (removal of the uterine tubes and ovaries).
For patients with extreme pain, a presacral neurectomy may be indicated where the nerves to the uterus are cut.
A variety of alternative treatments are being used in patients with endometriosis, including acupuncture and nutrition.
Patients who are pregnant generally have less pain during pregnancy, and it is not unusual to have fewer symptoms after a pregnancy.

yes you will have it the rest of your life. but you can go have surgery and take some of it out

There is no cure for endometriosis, but there are good treatments. You may need to try several treatments to find what works best for you. With any treatment, there is a chance that your symptoms could come back.

Treatment choices depend on whether you want to control pain or you want to get pregnant. For pain and bleeding, you can try medicines or surgery. If you want to get pregnant, you may need surgery to remove the implants.

I had it too and ended up having a hysterectomy - as it was pretty bad and I had HORRIBLE periods and stuff. I didn't HAVE to but the doctor gave me like 5 choices and I picked it -- I was done having children too though so it was a good thing for me. Probably the best thing I ever did.

my sister has that, and yes. however there are lots of treatments for it now that help better. make sure u continue going to your doc, and take care of yourself

Cured mine with a hysterectomy. Cleared it right up! No more heavy bleeding, no more pain and cramps, no more fainting and nausea, no more cysts, no more mess, no more pads or tampons, no more pms, no more hormones, no more anemia. I should have done this years ago!
Source(s):
Talk to your doctor. Get a second opinion if necessary. Not every case is the same.

Yes I do the same thing and it works well.
When you are ready for kids you can stop taking the pill and should be able to have kids. If you have a lot of scaring on the tubes you may have trouble getting pregnant.
But it is ok to take the pills and it works great for getting rid of the pain from the endometriosis.

If you are not ready for a family the BC may be a choice for that, but there are some natural choices that have worked great for many women. I am a Wellness Consultant and would be more than happy to consultant you on any decision you make. My email is wellnesshomeexpert@yahoo.com

I've had endo since I was about 12. I'm currently 25. I avoided Lupron because it's such a serious medication, but have tried many of the others, including continuous BC. Most doctors will say it's safe to take BC continuously. It depends on how it affects you. For me it gave me depression and weight gain, but it also gave me many pain free months/years. Endo is a life time disease, but for some it goes into remision and for others it never slows or stops. Try things out that you are comfortable with till you find something that works. I ended up having a laparscopic surgery and that helped a lot. Good luck.
Source(s):
There really is no easy answer to endo, I would recommend reading all you can about it from good sources. The Endometriosis Association is a good place to start and endometriosis.org. There's also plenty of books out there. check out www.endosupport.com for more information and links to trustworthy sites.

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I was recently diagnosed with Endometriosis, will I have this for the rest of my life?

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