Does anybody here have Endometriosis?!
Question: My doctor thinks I have Endometriosis. I'm only sixteen I thought only 30-40 year olds have it. I mean I fit all the sympthons but I don't want to lose an ovary or something or have the painful surgical test.
Answers:
Why have a test when there are only 2 options for getting rid of it. According to my doctor there's a shot I could take but that could throw me into early menopause. Option 2 is a hysterectomy which is unacceptable to me (and you!)
I'm afraid if you have it, dear, you'll just have to live with it. I hope yours isn't as painful as mine. Don't worry though. There are many different reactions to Endometriosis.
My aunt has it too but she has no pain and she was able to bear three children! The best thing you can do is to keep your body at its peak of health with a great diet and consistent exercise. If you do have pain like I do, then try some prescription Ibuprofen, hot baths and those large heat patches from the drugstore. Also, wearing a pad instead of a tampon for the first couple of days really eases my symptoms. Good luck sweetie.
Other Answers:
It is possible for young girls to get it, generally the treatment is birth controll pills.
In any case it is something you NEED to get under control, and sooner is always better.
You should seek the opinion of another doctor before you have any sort of surgery.
The only way to find out if you have Endometriosis is through Laparoscopic surgery. I was diagnosed in March of 99 with Mild Endometriosis after having painful periods and sometimes painful cramps throughout my cycle. I think I had it before 1999 cause I remember as a teen, I would have painful periods as young as 14! I am 32 years old and still suffer. I haven't had anything done to help it though. Just been on Birth control pills off and on since 1999. My aunt had it really bad at the age of 17 and she actually hemmorhaged cause of it. She lost one of her ovary's and her a fallopian tube cause of a chocolate cyst. If you ever want to have children, find out now. That way you know what you are up against cause most women with Endo are Infertile. The location of my Endo didn't affect my fertility and I have 3 beautiful daughters. :) Good Luck. There are also all kinds of websites on the net to help you understand more about Endometriosis.
I had endometriosis when i was 20 and it
was the most painful thing i was in constant
pain i tried everything to make the pain go a
way.But thin my doctor said i need to have a
total hysterectomy.But now thy have different
ways to helping with pain and treating endometriosis
now.Good luck to you.
Re: all of the above - Hysterectomy is not a cure. Pregnancy is not a cure, nor are "most women with Endo infertile." Lupron injections and birth control pills are not the cures, nor should you have Lupron without even having a diagnosis - not to mention, it's not for women under age 18. Girls and women of all ages can get Endo. While there is no cure, the good news is, you DO have options - you just may have to travel for them. Read the following carefully.
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. Their literature states:
"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/
Endo Self Test:
Not sure if you have Endometriosis? While pelvic surgery is the only current way to definitively diagnose it, symptoms can lead you and your doctor to suspect the disease. Review the following and consider if any of these common symptoms apply to you. Review your answers with your gynecologist for further discussion.
Do you experience so much pain during or around your period that you find yourself unable to work, attend school or social functions, or go about your normal routine? _____YES / _____ NO
Do you have any relatives diagnosed with Endometriosis? _____YES / _____ NO
Do you find yourself with painful abdominal bloating, swelling or tenderness at any time in your cycle? _____YES / _____ NO
Do you have a history of painful ovarian Endometriomas ("chocolate cysts")? _____YES / _____ NO
Do you have a history of miscarriage, infertility or ectopic pregnancy? _____YES / _____ NO
Do you experience gastrointestinal symptoms during your cycle, such as nausea or vomiting and/or painful abdominal cramping accompanied by diarrhea and/or constipation? _____YES / _____ NO
Do you have a history of fatigue and/or a lowered immunity (i.e., "sick and tired" all the time)? _____YES / _____ NO
Do you have a history of allergies, which tend to worsen around your periods? _____YES / _____ NO
If sexually active, do you experience pain during sexual activity? _____YES / _____ NO
Do you suffer from autoimmune diseases or other conditions (i.e., thyroid disease, rheumatoid arthritis, lupus, fibromyalgia, multiple sclerosis, chronic migraines)? _____YES / _____ NO
Have you ever undergone pelvic surgery like a laparoscopy, in which Endometriosis was suspected but not definitively diagnosed?
_____YES / _____ NO
If you have answered "yes" to one or more of these questions, you may have Endometriosis. Talk to your doctor about getting an accurate diagnosis and effective treatment today. Dull aching and cramping can occur during menstruation in many women and teens, due to uterine contractions and the release of various hormones including those known as prostaglandins. However, period pain that becomes so debilitating it renders you unable to go about your normal routine is not ordinary or typical! Pain is your body's way of signaling that something is WRONG. If you are suffering from pelvic pain at any point in your cycle, an Endometriosis diagnosis should be considered.
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!" ~ www.endocenter.org
Source(s):
See also - Center for Endo Care specialty surgery center - www.centerforendo.com
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