endometriosis- i have jst found out i have it- pretty scared any others out there?

Question

hi, I have recently found out I could be suffering from endometriosis- i saw my gynae and had a scan and it revealed my right ovary has moved behind my uterus- i'venever screamed so much when he touched it! now he says i could have endo- i'm only 17 but pretty scared of the effects on fertility- the pain in really bad but i can deal with that as long as i have the chance of having children- sorry to be so deep but i'm really worriesd about this- i have my laproscopy in November, and i'm so scared. is there any other women out there with this condition ?? if so could you give me some info on what happens in the op and also the chances of infertility, my gynae din't want ot discuss it! thank you i appriciate any answers.x.

Answer 1

I'm sorry you are feeling so scared right now. I know this can be a scary experience. I personally have not been through this but a very close friend of mine was diagnosed when we were 17 (we're both 23 now). I know the gyno told her she would most likely still be able to have kids. The gyno put my friend on the pill and she just takes it year-round -- she skips her period every month so she hasn't had a period since she was 17. When she is ready to start a family, she will go off the pill and it should be fine. When she is done having kids, they recommended a hysterectomy for her.

Please find another gyno. Your doctor should be willing to discuss any and everything with you. They should be able to tell you all of your options and possible risks. You will feel better having a doctor who is completely honest with you and able to inform you better. Do some research online on your own, and please reach out to someone in your life for comfort! I know you are scared and that's okay... just please get yourself some support so you can start to feel better.

Answer 2

You need a new gynaecologist.

Your doctor should discuss everything with you, and clear up any questions you have. It is difficult to get pregnant with endo, but not impossible and the good news is, if you do get pregnant, it often reverses the condition. A laproscopy is a pretty minor procedure; they make a very small incision and there isn't much scarring or pain. It's more uncomfortable than anything else.

I've never heard that the ovary moving behind the uterus can cause endometriosis. That may be a separate issue.

I hope you do not have endometriosis.

Answer 3

Hi MariaP, Endo can be pretty scary. I've had it since I was about 12. I was diagnosed with endo about 5 years ago, and officially diagnosed through surgery about 1 year ago. I had a laparoscopy. First of all, you should find a different doctor.

There is no reason that the doctor shouldn't discuss everything with you. I would find an endo specialist in your area asap and have them do the surgery. Many times doctors who don't specialize in endo aren't the best at getting all the endo when they are in surgery. I'd recommend visiting the Endometriosis Association online (www.endo-online.org), check out www.endosupport.com for information, and webMD for information on how to deal with laparoscopy and what to expect.

I had out-patient surgery, it went fine. I was in surgery for about 2 hours total, in recovery for about another 2-3 hours, and then home in bed to rest for a couple days. I took off 4 days total just to be sure. I was in a lot of pain after surgery, it's kinda like endo pain or like I did a zillion crunchs. They make two very small incisions, one near the belly button, the other near the crease in your leg to your belly. They give you some great pain killers, use them for the first day. And recovery isn't too bad.

Hopefully it'll go as smoothly for you as it did for me. I had some endo pain up to a month later, but since then it has subsided and I'm only dealing with occassional endo pain. Good luck!

Answer 4

Don't be to scared.I was 4 when I had my first surgery where they removed my right ovary.I had surgery again when I was 15 and they removed a cyst off my left ovary.I have had alot of surgerys for the same thing.It would cause alot of pain. I have had 3 kids in between all the surgerys. I didn't find out I had endometriosis until I was 26.But at that time I had alot of pulips on my uturis.Plus I had 3 kids so she did a complete hysterectomy.I know it sucks but I am happy you found out now.You can still have kids.I don't think I would wait till I was 30 to have kids.Anyway Good Luck!

Answer 5

What is endometriosis?

Endometriosis (say “en-doh-mee-tree-OH-sus”) is a problem many women have during their childbearing years. It means that a type of tissue that lines your uterus is also growing outside your uterus. This does not always cause symptoms, and it usually is not dangerous. But it can cause pain and other problems.

The clumps of tissue that grow outside your uterus are called implants. They usually grow on the ovaries, the fallopian tubes, the outer wall of the uterus, the intestines, or other organs in the belly. In rare cases, they spread to areas beyond the belly.

How does endometriosis cause problems?

Your uterus is lined with a type of tissue called endometrium (say “en-doh-MEE-tree-um”). It is like a soft nest where a fertilized egg can grow. Each month, your body releases hormones that cause the endometrium to thicken and get ready for an egg. If you get pregnant, the fertilized egg attaches to the endometrium and starts to grow. If you do not get pregnant, the endometrium breaks down, and your body sheds it as blood. This is your menstrual period.

When you have endometriosis, the implants of tissue outside your uterus act just like the tissue lining your uterus. During your menstrual cycle, they get thicker, then break down and bleed. But the implants are outside your uterus, so the blood cannot flow out of your body. The implants can get irritated and painful. Sometimes they form scar tissue or fluid-filled sacs (cysts). Scar tissue may make it hard to get pregnant.

What causes endometriosis?

Experts do not know what causes endometrial tissue to grow outside your uterus. But they do know that the female hormone estrogen makes the problem worse. Women have high levels of estrogen during their childbearing years. It is during these years—usually from their teens into their 40s—that women have endometriosis. Estrogen levels drop when menstrual periods stop (menopause). Symptoms usually go away then.

What are the symptoms?

The most common symptoms are:

Pain. Where it hurts depends on where the implants are growing. You may have pain in your lower belly, your rectum or vagina, or your lower back. You may have pain only before and during your periods or all the time. Some women have more pain during sex, when they have a bowel movement, or when their ovaries release an egg (ovulation).
Abnormal bleeding. Some women have heavy periods, spotting or bleeding between periods, bleeding after sex, or blood in their urine or stool.
Trouble getting pregnant (infertility). This is the only symptom some women have.
Endometriosis varies from woman to woman. Some women do not know that they have it until they see a doctor because they cannot get pregnant. Some have mild cramping that they think is normal for them. In other women, the pain and bleeding are so bad that they are not able to work or go to school.

How is endometriosis diagnosed?

Many different problems can cause painful or heavy periods. To find out if you have endometriosis, your doctor will:

Ask questions about your symptoms, your periods, your past health, and your family history. Endometriosis sometimes runs in families.
Do a pelvic exam. This may include checking both your vagina and rectum.
If it seems like you have endometriosis, your doctor may suggest that you try medicine for a few months. If you get better using medicine, you probably have endometriosis.

To find out if you have a cyst on an ovary, you might have an imaging test like an ultrasound, an MRI, or a CT scan. These tests show pictures of what is inside your belly.

The only way to be sure you have endometriosis is to have a type of surgery called laparoscopy (say “lap-uh-ROS-cuh-pee”). During this surgery, the doctor puts a thin, lighted tube through a small cut in your belly. This lets the doctor see what is inside your belly. If the doctor finds implants, scar tissue, or cysts, he or she can remove them during the same surgery.

How is it treated?

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.

Treatments for endometriosis include:

Over-the-counter pain medicines like ibuprofen (such as Advil or Motrin) or naproxen (such as Aleve). These medicines are called anti-inflammatory drugs, or NSAIDs. They can reduce bleeding and pain.
Birth control pills. They are the best treatment to control pain and shrink implants. Most women can use them safely for years. But you cannot use them if you want to get pregnant.
Hormone therapy. This stops your periods and shrinks implants. But it can cause side effects, and pain may come back after treatment ends. Like birth control pills, hormone therapy will keep you from getting pregnant.
Laparoscopy to remove implants and scar tissue. This may reduce pain, and it may also help you get pregnant.
As a last resort for severe pain, some women have their uterus and ovaries removed (hysterectomy and oophorectomy). If you have your ovaries taken out, your estrogen level will drop and your symptoms will probably go away. But you may have symptoms of menopause, and you will not be able to get pregnant.

If you are getting close to menopause, you may want to try to manage your symptoms with medicines rather than surgery. Endometriosis usually stops causing problems when you stop having periods.

What else should I think about?

If you are thinking about using medicines for pain, keep the following in mind:

NSAIDs are not a good choice if there is a chance that you are or could soon become pregnant. They may increase the chance that you will have a miscarriage. Check with your doctor before using any over-the-counter medicine for more than a few days at a time.
Hormone therapy can cause a range of side effects. Some are unpleasant, like those caused by menopause. Others are serious, like bone thinning (osteoporosis). To limit these problems, hormone therapy is only used for a few months at a time. Be sure to find out the side effects of any therapy you are thinking about.

Answer 6

find another obgyn

Answer 7

Diagnostic tests like CT scans, ultrasounds, etc. do not confirm a true diagnosis of Endo. However, it is entirely possible that you have it. You will know for sure after your upcoming lap. 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
*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/

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