What is Endometriosis?
During monthly menstruation, the female body sheds the endometrium - uterine lining - in the process commonly known as a "period". In women and girls who have endometriosis, some of these menstrual fluids are retained in the body and abnormally implant in areas outside of the uterus. These implants, or nodules, eventually accumulate on the bladder, bowel, ovaries, cul de sac, and other nearby organs, leading to the development of adhesions, scarring and invasive nodules. This can cause symptoms that vary from painful periods, chronic pelvic pain, infertility, pain associated with intercourse and sexual activity to painful bowel movements, rectal pain and urinary pain or difficulty.
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, higher stage (3 and 4) disease may cause little to no symptoms in some women. Situations vary; moderate growth 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.
No consensus has been reached on the definitive cause of endometriosis, though stem cells, genetics, dysfunctional immune response, and environmental triggers may all be part of the multi-factorial origin of the disease. A woman or girl with a mother who has endometriosis is seven times more likely to have the disease herself; endometriosis is also associated with other autoimmune disorders such as thyroid disease.
Despite the confusion and misinformation continuing to surround the disease, the profound, agonizing pain caused by endometriosis is actually treatable, and in many cases quite successfully. Unfortunately, due to a lack of societal and medical community awareness, women are frequently directed to "manage" their discomfort for years with powerful painkillers and hormones - but these only mask symptoms of the condition. What's more, many patients are incorrectly informed by their doctors and treated for symptoms but not endometriosis, which consequently causes a long delay in effective treatment. This dangerous result has led to many "hit or miss" surgeries and thousands of unnecessary hysterectomies. Laparoscopic Excision Surgery - deep removal of all disease from all areas including bowel, bladder and beyond - is an effective, organ-sparing option; ideally performed by experienced, specialized surgeons with dedicated, multidisciplinary medical teams.
Endometriosis Facts & Statistics
- Most women with endometriosis suffer pain—and present symptoms—up to a full decade prior to diagnosis.
- Approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America alone.
- Associated costs of the disease are estimated to be a staggering $22 billion annually.
- The average woman is 27 when she is first diagnosed with endometriosis.
- Endometriosis is one of the top three causes of female infertility. While it is one of the most treatable, it remains the least treated.
- Abdominal and bowel symptoms linked to endometriosis are commonly misdiagnosed as Irritable Bowel Syndrome (IBS).
- Endometriosis is often misdiagnosed as Pelvic Congestion or Pelvic Inflammatory Disease (PID).
- Many infertile women with endometriosis experienced debilitating painful periods as teenagers but were misdiagnosed.
- Many women suffer silently because they feel that their pain, especially pain associated with sexual intercourse, is just too personal to discuss with their gynecologist. This is more common in some cultures than others.
- Many cases of endometriosis can be successfully treated with Laparoscopic Excision Surgery. Hysterectomy should only ever be considered as a last resort. There is no oral medication to cure endometriosis.
Symptoms of Endometriosis
Endometriosis is much more than simple “killer cramps.” It can cause symptoms varying from painful periods (called dysmenorrhea), to pain with sexual activity (referred to as dyspareunia), to gastrointestinal and urinary tract difficulties (respectively referred to as dyschezia and dysuria). Infertility is also prevalent in endometriosis, affecting more than half of women who have the disease. Some characteristic signs of endometriosis include:
- chronic or intermittent pelvic pain
- painful menstruation
- irregular vaginal or uterine bleeding
- irregular vaginal clotting
- large, painful ovarian cysts called endometriomas or "chocolate cysts"
- infertility, miscarriage, ectopic (tubal) pregnancy
- pain associated with intercourse
- nausea/vomiting, gastrointestinal cramping, diarrhea/constipation, particularly with periods
- rectal pain
- blood in the urine; urinary frequency, retention, or urgency
- fatigue, chronic pain, allergies and other immune-related issues are also commonly reported complaints in those with endometriosis
Despite advances in diagnostic technology, a confirmation of endometriosis requires surgical biopsy. This is commonly obtained through a minimally invasive procedure called laparoscopy. Laparoscopy is typically performed on an out-patient basis. Your surgeon will look at your abdomen and pelvic cavity through an instrument known as the laparoscope. This surgery allows your surgeon to inspect your abdominal and pelvic regions (and beyond, as needed) to diagnose and subsequently remove the disease. To date, anything less than surgical confirmation of endometriosis is considered uncertain. Due to its diagnostic difficulties, endometriosis may be mistaken for other disorders that include:
- adenomyosis (sometimes called "Endometriosis Interna")
- ovarian cysts
- bowel obstruction
- colon cancer
- ectopic pregnancy
- inflammatory bowel disease (IBD)
- irritable bowel syndrome (IBS)
- ovarian cancer
- PID (pelvic inflammatory disease) or sexually transmitted disease(s)
Endometriosis is NOT an STD or an infection of any kind. It is not contagious. Though it cannot be prevented, treatments do exist.
Endometriosis impacts women and adolescents’ quality of life, sexual pleasure, and ability to have children. The founders of EFA strongly believe that specialized surgery called “Laparoscopic Excision” is the gold standard of endometriosis treatment.
Laparoscopic Excision Surgery
Laparoscopic excision removes all forms of the disease, restores normal organ placement and function, and treats pelvic pain and infertility. With laparoscopic excision, patients can expect a great deal of their symptoms to disappear or be greatly reduced. In most cases, even in higher stages, excision surgery can successfully resolve infertility as well. Laparoscopic excision involves finding and excising, or cutting out, all forms of endometriosis. Currently only a small number of advanced gynecologic surgeons perform this life-changing operation, including EFA’s Founder, Dr. Tamer Seckin, MD.
Other Laparoscopic Surgeries
Other surgical techniques exist, including surgical ablation, cauterization, fulguration or vaporization through the laparoscope. These types of laparoscopic 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 tissue as laparoscopic excision. These kinds of incomplete removal 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.
While removal of the uterus has a role in endometriosis treatment, it should never be considered a cure. 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
Studies have shown that endometrial tissue outside the uterus responds to hormones like endometrial tissue inside the uterus. This means the tissue grows, swells, and sheds during the menstrual cycle. Popular medical treatments have largely been designed to stop menstruation and mimic menopause.
Contraceptive-Based Hormonal Treatments
Three common types of hormonal contraception – Depo-Provera®, Mirena®, and oral contraceptive pills can be used to treat endometriosis.
Continuous Oral Contraceptives: Taking oral contraceptive pills without any breaks may be a good treatment for women and girls with the disease who continue to experience painful periods when they use oral contraceptive pills the “normal” way in which they have a cycle at the end of every four week pack. 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® 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 endometriosis symptoms. But some women and girls find Depo Provera’s® side effects to be problematic. Symptoms of endometriosis will recur when the drug therapy is stopped.
The Mirena® coil is another progestin therapy. Mirena® is a small, plastic T-shaped intrauterine device (IUD) that can be used for up to five years. Little information is available on the use of Mirena for women with endometriosis and its use is largely anecdotal. The Mirena® IUD 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.
Other Hormone Therapies
GnRH-As: 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; making a condition similar to that of menopause. GnRH-As are intended to suppress the symptoms of endometriosis temporarily. Indeed, 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 ranging from bone density loss to impaired memory function, among others.
Aromatase Inhibitors: Similar to GnRH-A therapy, Aromatase Inhibitors (such as Letrozole®) are a relatively new 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.
Contraceptive-Based Hormonal Treatments
Other Hormonal Treatments
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. Long-term use of painkillers can have many side effects.
Diet and Nutrition
Some women find they may be able to effectively reduce and even control their symptoms through changes in diet. Anecdotally, there is evidence that diets that promote anti-inflammatory, healing properties can promote hormonal balance and reduce symptoms. The dietary approach can also address the Candida (yeast) and food allergy concerns that many women with endometriosis experience. While no single diet or food approach will work for all women and girls with the disease, it is a non-invasive means of improving overall health. A wonderful resource on this topic for further reading is “Endometriosis: a Key to Healing through Nutrition” by Dian Shepperson Mills, MA and Michael Vernon, PhD, HCLD.
Alternative therapies include many very different methods. Some of the most popular therapies reported by the endometriosis community include herbal medicines, acupuncture and various kinds of massage, exercise, biofeedback therapy, transcutaneous electrical nerve stimulation (TENS), and other homeopathic and naturopathic therapies.