endometreosis at 19?

Question

my last question i should have been more spasific im 19 years old and have been dicgnosed with endometeroses and overian cists im about to go into surgery in a week for a D&C im really nervis but im more nervis that when they get in there they will find that the cysts have done to much damage that i will not be able to become pregnant what kind of questions should i talk to my dr. about before i go under the knif and what how great are my chances that my overies will be to damaged to have kids

ps i have gone 3 years with this being untreated!
please help

Answer 1

Diagnostic tests like CT scans, ultrasounds, etc. do not confirm a true diagnosis of Endo, nor is a D & C a treatment for the disease. You will definitely want to read the following and check out the links below for a TON of info:

Join others who understand at the internet’s largest electronic support group: http://health.groups.yahoo.com/group/erc - and note, be sure to check out the "files" there, as they have free laparoscopy info manuals and lots of "how to cope well with Endo" type of info...

Girl Talk, for young women with Endo
http://groups.yahoo.com/group/ercgirltalk
*note - they have an awesome "Girl Talk Kit" for free also, discussing Endo in younger patients and treatments, etc.

Endo Research Center (www.endocenter.org) literature states (reposted here with full credit to them):

"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/

Answer 2

Hi, I was diagnosed with endo and an ovarian cyst when I was 20, but I had it before then for who knows how long...anyways...ask your Dr. why the DNC instead of a surgery call laproscopy, thats what I had...it was outpatient surgery, I was scared too but everything was great! They make a tiny un-noticable cut in your bellybutton and one a little lower down where they laser off the endo and cyst. The endo could be in more places than your uterus, I would think they would want to find out thru a laproscopy. Endo can cause scarring, but when you are ready to get pregnant, if the scarring is a problem, there are procedures to help with getting pregnant. The more questions you ask your Dr. will help you feel better. The surgery helped to take away the pain I was having from endo, so look forward to being relieved. I know several women who have endo and have had kids. :) Ask your Dr. the same Q's you asked us.

~If for some reason you can't have children someday, just know in your heart that an adopted child is a beautiful answer too.
Hope I helped some...Good luck!!

Answer 3

i m an endo survivor...i have had it since i was in the sixth grade...am now 26. i was a soph. in h.s. when i was taken from school into the ER and kept for 3 days before surgery. I had a cyst and fluid build up and endo everywhere...cool thing was i got to keep all the gory pictures! It came back and i was 19 too when i had to make up mind again...surgery,treatment,baby, or what? Surgery was first, then my treat was lupron shots...but 3 mths into the 6 mth treatment my body started to give out...so we stopped. I opted to having a baby. Married my h.s. sweetheart and then tried...but 1 year and no luck. I was worried i couldn't have a baby...so i set an infert. dr. appt. and that week a miracle happened...i found out i was preg. and canceled that appt. Now...the preg. was high risk and very scary, lots of bed rest. And the thing is...a baby could cure it, but it could not. I was great for 8mths then more pain. Then out of the blue we had another baby 22mths later, when we were not trying. That time around was a breeze and perfect.

I know what it is like to cry all the time...still kinda do. I missed alot of school and barely passed, I was worried i would not make it in college because of all the sick days i can't move and get out of bed. Sometimes the pain is so bad u find urself getting sick or not being able to move. I opted for a family first...instead of school because I love children and i wanted to focus on one thing at a time...but whatever your goals are in life...don't let the pain stop you from living your dreams and reaching your goals. My doctor is amazing and she always is there for my questions and remember to ask your doctor..what would you do in my shoes? just for some extra comfort for your worries.

I just went in again today...i have been great for 21/2 years...but the pain is coming back...and all the old trips to the dr and testings are too. So my sono showed no cysts yet but i too might hav a lap done again with a d&c....

My heart goes out to you...remember not to let the pain get u down and find a great support system to help u through it.
Good luck and let me know how it goes.
A

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Answer 4

Having kids may seem very important to you, especially at 19 years old. Discuss your concerns with your doctor; it may help to write up a brief list of questions before your appointment.

If he/she does not have time to respond to your concerns, try to locate a good psychologist who has more time to discuss your issues.

Whatever the outcome of your procedure, it will not be the end of the world.

...Unless you somehow die, but no sense worrying about that since it would be completely out of your control.