Endometriosis is a reproductive disease affecting approximately 176 million women and girls worldwide – 8.5 million in North America alone. With the potential to cause severe pelvic pain, infertility and a myriad of physical, sexual, emotional, academic, quality of life and career issues, and with associated costs soaring near $22 billion annually, endometriosis has proven it is more than just “killer cramps."
Qualitative studies indicate that a large number of women and girls with endometriosis remain under-diagnosed, ineffectively treated and isolated as a result of the disease. In contrast to this stark picture painted of the disease, however, the profound symptoms caused by endometriosis are actually quite treatable. With early diagnosis and timely intervention, there is help – and hope!
What Is Endometriosis?
During the normal menses or period, the female body naturally sheds the endometrium – the clinical term for the lining of the uterus. In women and girls with endometriosis, however, some of this menstrual fluid leaks back into the body and begins to implant in the surrounding areas. This aberrant tissue still responds to hormonal commands and grows, menstruates and sheds. Unlike normal endometrium, however, these implants have no way of exiting the body and subsequently give rise to the disease.
The process results in internal bleeding, development of debris-filled cysts known as endometriomas, painful inflammation, production of irritating enzymes, and formation of scar tissue and adhesions (fibrous bands of dense tissue). These can lead to the “binding” or twisting of organs.
Commonly referred to as lesions, nodules or implants, endometriosis typically develops on the pelvic structures including the bladder, bowel, intestines, ovaries, fallopian tubes and elsewhere in the abdominal cavity region.
Though the pelvis is the most common site for endometriosis, the disease has also been diagnosed in other locations such as the diaphragm, lungs and other areas far outside the abdominopelvic region.
What Are Some Signs of Endometriosis?
Hallmark symptoms indicating that endometriosis should be considered as a possible diagnosis include:
- Painful menstruation; particularly severe cramping that lasts longer than 2 days
- Intermittent pelvic pain at any time in the cycle
- Painful intercourse
- Infertility and pregnancy loss
- Gastrointestinal and urinary tract difficulties
- Rectal pain
- Immune and allergy-related disorders
Unfortunately, due to a widespread lack of awareness, women and girls go an average of nearly a decade before their symptoms are accurately diagnosed. Complaints of “killer cramping," particularly among younger women, are often dismissed as “normal." Endometriosis can also masquerade as other disorders, including fibroids or adenomyosis, and not all women will have all symptoms – as many as one-third of women may not demonstrate any signs of the disease until infertility becomes an issue.
Endometriosis has also been associated with other health concerns, such as certain autoimmune diseases, fibroids, adenomyosis, interstitial cystitis, and even certain malignancies, but this research is still too early to be conclusive.
A common myth about endometriosis is that the more endometrial cells accumulated in the body outside of the uterine cavity, the more pain it causes for the woman. Any amount of endometriosis can cause pain, and the disease does not need to be advanced to cause significant symptoms. Likewise, a higher stage (3 and 4) disease may cause little to no symptoms in some women.
Situations vary; moderate growth (stage 1 or 2) can trigger intense pain in some women while advanced growth causes less severe pain in others. Every woman's situation is unique and therefore expert medical evaluation is absolutely essential.
What Causes Endometriosis?
Endometriosis is not a sexually transmitted disease (STD) or other infection of any kind, nor is it contagious. Often called a “disease of theories," the definitive cause remains under debate. However, recent studies indicate that genetics, immune dysfunction, cell transformation (called metaplasia) and exposure to environmental toxicants may all be contributing factors. More recently, landmark studies have implicated mesenchymal stem cells in the origins of the disease.
Any girl or woman of any racial, ethnic and socioeconomic background can develop endometriosis, which is neither contagious nor preventable, but some patients may be genetically predisposed. For example, a woman with a mother or sister who has the disease is 6 times more likely to develop endometriosis herself. Those who begin their period at an early age, experience heavy periods, have periods that last more than 7 days, and/or experience short monthly cycles (27 days or less) may also be at an increased risk. Nonetheless, no single theory explains the development of endometriosis in all patients; more likely, a composite of several mechanisms is involved.
How Is Endometriosis Diagnosed?
Despite advances in medical technology, a confirmation of endometriosis still requires surgical biopsy. This is obtained through a minimally invasive procedure called laparoscopy, a typically out-patient, minimally-invasive procedure. Performed under general anesthesia, this procedure allows your doctor to view the abdominal and pelvic organs to diagnose and subsequently extract the disease. Though certain diagnostic tests can be used as part of a preliminary work-up, anything less than surgical confirmation of endometriosis is considered uncertain.
Unfortunately, women and girls are often misdiagnosed or directed to "manage" the pain for years with painkillers and other medications, but these only mask symptoms of the disease. Patients are also sometimes misled to believe that the only long-term solution is removal of all female reproductive organs, which is a myth. Endometriosis is not cured by removal of the reproductive organs. This dangerous misconception is responsible for countless, needless hysterectomies performed each year.
How Is Endometriosis Treated?
Though there is currently no absolute cure, laparoscopic excision surgery is an effective, organ-sparing option which is largely considered the gold standard of treatment. Laparoscopic excision removes all forms of the disease from “root to tip," restores normal organ placement and function, treats pain and even in advanced stages, infertility. With laparoscopic excision, patients can expect a great number of their symptoms to disappear or be significantly reduced. Unlike other surgical methods, laparoscopic excision removes all depths of implants – from all areas.
Other laparoscopic techniques include superficial removal such as ablation, cauterization, fulguration or vaporization. These types of surgeries involve the removal of endometriosis on the surface of different tissues and organs in the pelvic region, but do not go as deeply into tissues as laparoscopic excision. Incomplete removal of disease may offer temporary relief of endometriosis, though studies have placed recurrence rates at 40-60% within the very first year following these types of surgery.
Hysterectomy is a highly misunderstood option, often recommended as “a cure” – which it is not. While removal of the uterus has a role in endometriosis, it should never be considered a cure or first line of treatment. Removal of the uterus and in some cases, the tubes and ovaries may be helpful in limited circumstances, such as in those who have largely invasive disease that may have resulted in “frozen pelvis.” Each case for hysterectomy should be very carefully evaluated and should also include meticulous excision of all disease at the time of the procedure.
Hormonal treatments are also very familiar to those struggling with the disease. Popular medical treatments, largely designed to stop menstruation and/or mimic menopause, include:
- Continuous oral contraceptives: Taking oral contraceptive pills without any breaks may be a good symptomatic treatment for women and girls with the disease who continue to experience painful periods. Taking oral contraceptive pills continuously suppresses menstruation and as a result may relieve many symptoms of endometriosis. Some women find the side effects of oral contraceptives (i.e. weight gain, depression or headaches) to be problematic. Symptoms of endometriosis will recur when women stop taking the pills.
- Depo-Provera®: This injection can be used to create levels of the hormone progesterone to resemble a woman’s hormones in early pregnancy. This stops ovulation and menstrual periods in most women and may help some women or girls with temporary relief from symptoms. Some women and girls find Depo-Provera’s® side effects to be problematic. Symptoms of endometriosis will recur when the drug therapy is stopped.
- Mirena®: The Mirena® coil is another progestin therapy. Mirena® is a small, plastic T-shaped intrauterine device (IUD) that can be used for up to 5 years. Little information is available on the use of Mirena for women with endometriosis and its use is largely anecdotal. Mirena® is a relatively new option for women and girls with the disease and only limited studies about effectiveness, potential side effects, and long-term outcomes have been done.
- GnRH-Agonists: Lupron®, Zoladex®, Synarel® and Suprefact® are common GnRH-A (gonadatropin releasing hormone agonist) drugs. These drugs are designed to cause a patient to stop ovulating or menstruating; inducing a condition similar to that of menopause. GnRH-As are intended to suppress the symptoms of endometriosis temporarily. Rates of recurrence in the first year following therapy may be as high as 74.4%. GnRH-As may also have significantly negative – and long-lasting – side effects for some women, ranging from bone density loss to impaired memory function, among others. GnRH-As are not FDA approved for use more than twice in a lifetime, nor in women under 18.
- Aromatase Inhibitors: Similar to GnRH-A therapy, Aromatase Inhibitors (such as Letrozole®) are a class of drugs designed to temporarily suppress estrogen levels. They are intended for short-term relief of symptoms only. Side effects are expected to be similar to those experienced with Lupron® and other GnRH-A drugs, and recurrence of endometriosis in the long-term has not been adequately studied.
- Pain killers like aspirin or ibuprofen as well as non-steroidal anti-inflammatory drugs and prescription narcotics such as Vicodin® may help reduce – but not remove – some of the symptoms associated with the disease as well. Long-term use of painkillers can have many side effects.
Alternative therapies are also an option. Click here to learn about relevant therapies for endometriosis.
Live Well in Spite of Endometriosis
Though considered a “chronic” condition with far-reaching impact, through early intervention, timely diagnosis and application of effective treatments, it is entirely possible to live well in spite of the disease. A multi-faceted approach often encompassing surgical removal of disease accompanied by certain lifestyle or medical therapies may help reduce or manage symptoms and restore quality of life. Support is another of the biggest components for coping. Sharing experiences with others who understand in a compassionate environment can be the key to finding effective ways to deal with the disease.
Pain is never normal, and is the body’s way of sending the message that something is wrong. If you or a loved one suffers from pelvic pain, listen to your body, talk to your gynecologist to find out if endometriosis is the cause of that message. If that doctor won’t take your pain seriously, find one that will partner with you in your care to find the answers.
Remember, you’re never alone, and there is help and hope. For more information and assistance with endometriosis, please visit the Endometriosis Foundation of America at http://www.endofound.org.