Endometriosis: No, Severe pain is NOT "Normal"
Endometriosis is a fairly common but poorly understood disease that is frequently undetected, untreated, and misdiagnosed. Current estimates of those who are affected by it range from 2% to 10% of all women in their reproductive years. According to the National Women’s Health Information Center, at least 5.5 million women in the United States have endometriosis.
Endometriosis can develop anytime during a woman’s reproductive years. It is estimated that about half of the cases of severe menstrual cramping may actually be caused by endometriosis. The actual number of women afflicted with endometriosis is unknown because the disease is frequently without symptoms, and is only definitively diagnosed by surgical biopsy. Any other method of diagnosis is considered inadequate because the disease can be mistaken for other conditions with similar sources of pain and discomfort.
Endometriosis is a condition in which the tissue that is normally found inside the uterus, on the surface of the uterine wall (the endometrium), is found outside the uterus. The expelled endometrial tissue cells migrate into different areas of the body and implant themselves on other organs and tissue, where they grow and proliferate, causing pain, infertility and other health problems. The ectopic (i.e., external or misplaced) endometrial tissue takes the form of nodules, lesions, cysts, implants or growths.
Each month, in preparation for possible pregnancy, normal endometrial tissue swells and thickens in response to the female hormones, lining the inside of the uterus with blood to form a nourishing nest. When conception does not occur, this endometrial lining is shed and menstrual flow begins.
With endometriosis, the uterus continues its monthly function, while the ectopic endometrial tissue that has migrated outside of the uterus into other areas of the body also responds to the female hormones associated with the menstrual cycle—swelling, thickening and bleeding at the same time as menses. However, unlike the endometrial tissue lining the uterus, which sheds into the uterine cavity and is eliminated the endometriosis bleeds and has nowhere to go. It remains in the body, causing inflammation of the surrounding tissue, which leads to the formation of scar tissue and adhesions. It creates dense fibrous tissue that can spin webs among the pelvic organs, matting them together and interfering with the organs’ normal function.
Endometriosis typically affects the organs and structure of the pelvis, including the surface of the ovaries, the muscle tissue around the uterus, the fallopian tubes, and the lining of the pelvic cavity. It surrounds the organs, compresses them, pushes them aside, or invades and penetrates them. Endometriosis also has the capacity to spread to distant sites within the body and proliferate. Less typical sites include the gastrointestinal system and, more rarely, the urinary tract and lower genital tract. Sometimes, the lungs and limbs can also be affected
No one is certain what causes endometriosis, although researchers believe that genetics, a dysfunctional immune system, hormones, and environmental factors may all play a part in it. According to the Endometriosis Foundation, a woman (or girl) with a mother who has endometriosis is seven times more likely to have the disease herself.
Menstruation is the primary common denominator in endometriosis. But women with short menstrual cycles of less than 27 days, and/or a long menstrual flow of over one week, are more likely to develop endometriosis.
One theory suggests that endometriosis may result from “retrograde menstrual flow,” which occurs when some of the endometrial tissue backs up through the fallopian tubes, and escapes outside the uterus and through the fringes of the pelvic cavity. However, most women have had some retrograde flow, and not all of these women get endometriosis, so there is more to it.
Whether or not a woman has ever been pregnant does not seem to be a factor. However, because endometriosis occurs during a woman’s reproductive years, it is believed to depend upon stimulation by the ovarian hormones. Estrogen, a hormone involved in the female reproductive cycle, promotes cell growth and therefore is believed to contribute to endometriosis.
Another theory suggests that endometriosis may be spread through the blood or lymph systems, which would explain its presence in areas outside of the pelvic region, such as in the lungs and arms.
Some practitioners believe that an overgrowth of yeast (Candida albicans) has something to do with the initiation and progression of endometriosis. It seems that women who recognized that some of their symptoms were related to yeast, and took the necessary steps to overcome the yeast overgrowth, were able to reverse the symptoms of endometriosis. Treatment of candida includes using agents that kill the yeast, diet modifications to eliminate sugar- and yeast-containing foods, and probiotics to reestablish a healthy flora in the gastrointestinal system.
Some women with endometriosis actually have an allergy to their own hormones, specifically progesterone and LH (luteinizing hormone, which stimulates progesterone production). Doctors who specialize in environmental medicine have developed treatments designed to desensitize women to these hormone allergies. Once the desensitization is complete, they can be treated for the endometriosis using progesterone without problems. During a conversation with environmental specialist Dr. Morton Teich, he mentioned that although he focuses on desensitization work, he has observed that when he has treated patients for yeast overgrowth, the allergies also disappeared.
Researchers are also looking into environmental exposure to pesticides and other toxins, environmental hormones, and substances that mimic hormones as potential causes of or contributors to endometriosis. For example, the Endometriosis Association supported research at the University of Wisconsin, which demonstrated that endometriosis could be initiated in monkeys upon dioxin exposure.
Dioxins, a by-product of many manufacturing processes, persist in the environment for long periods of time and accumulate in food sources such as meat, dairy and fish. In fact, many countries now monitor the amount of dioxins in food and will recall food with unsafe levels.
Dioxins have long been established as significant hormone disrupters, so it is not surprising that they would have an effect like endometriosis, which is believed to be a hormone-related disease. Environmental exposures to dioxins may explain why endometriosis occurs with greater frequency in some areas of the country (and the world) over others.
In addition to dioxin, anything that mimics or disrupts normal hormone activity may contribute to endometriosis, such as the phthalates and bisphenols commonly found in plastics, pesticides and insecticides. Even soy, which has estrogen-like properties, may be a problem for women with endometriosis.
Some women may experience no symptoms with endometriosis. Other women will experience symptoms that may or may not correlate with their menstrual periods. Symptoms may come and go, or occur at set times in a woman’s menstrual cycle. The symptoms may seem to worsen over time. For some women, symptoms may occur in a consistent pattern for years. For others, their symptoms may be marked by inconsistency, with symptoms that do not occur every month, or in the same pattern or location, or with the same intensity.
The most predominant symptom for endometriosis is pain. Women in general are often ignored when they complain about any pain associated with menstruation. For some, it can be so incapacitating that the sufferer is not able to function normally.
Healthcare practitioners and others tend to brush aside the type of cyclical pain that can first appear in the teenage years. They are quick to prescribe birth control pills as a first course of “treatment,” which might (or might not) ease the pain of endometriosis. Next, narcotic-type pain relievers might be prescribed. However, the continued need for pain relief can lead to dependence on these drugs to cope.
Let’s be clear: severe pain is NOT normal, not during menstruation, not ever! The pain associated with endometriosis is more severe than menstrual cramps, but also can be very confusing. The words used to describe it include dull, persistent, deep, burning, stabbing, grinding or gnawing. The pain may be accompanied by nausea, intestinal cramping, vomiting, diarrhea, constipation or dizziness.
The pain may be located in the center of the abdomen or on one or both sides. It may radiate to the lower back, the thighs, or the rectum. General pelvic pain may occur when a woman makes a certain movement or sudden actions. This tugging or yanking sensation may result from pulling on adhesions or scar tissues stretching between organs.
The nature and intensity of the pain associated with endometriosis can vary. Pain might be intermittent or continuous in nature, usually occurring before and during menstruation, and during or after sexual activity. The location and level of pain may not always directly relate to the extent of visible endometrial growths. Some women with extensive visible endometrial growths may be entirely pain free, while others with a few small growths experience severe pain.
With endometriosis, abnormal growths occur and proliferate, most typically in the pelvic cavity. Adhesions on the ovaries are common. There may be one or more areas, some as small as a pinhead and others that grow much larger (but rarely larger than an orange). The small areas look like blood blisters and may be blue, dusty red or brownish black, depending on how much fresh or old blood is present.
Endometrial cysts may form when ovarian tissue tries to protect itself by growing a “lid” of tissue over the endometrial implant. These cysts swell and bleed cyclically because they respond to hormones and grow like uterine tissue. The cysts may rupture, usually just before or immediately after menstruation, spilling the contents into the pelvic cavity.
The swelling and rupture are painful, and the old blood from the cyst is highly irritating to the lining of the pelvic cavity, which causes inflammation and more pain. The cells in the rest of the pelvic area secrete bands of fibrous material that solidify and seal over the ruptured cyst. Repeated spillage from ruptured cysts can produce adhesions that bind the organs together so that the pelvic organs become one large, immovable mass.
When endometriosis is present on the lining of the pelvic cavity or on the supportive tissues that hold the uterus in place, it may look and behave somewhat differently than endometriosis located on the ovaries. It usually appears as a varying number of small blueberry-like spots that may group together to form solid knobby bumps.
These areas of endometriosis may also “menstruate” at first but, as the disease progresses, so much scar tissue is formed that the ectopic endometrial tissue gets compressed, can no longer bleed, and becomes inactive. Considerable damage may occur before this inactive stage is reached, because the scarring draws more tissue to adjacent organs as it progresses. While the inactive tissue may no longer menstruate, it may continue to swell each month. Because this tissue is now covered in firm, unyielding scar tissue, this can result in a considerable amount of pain.
As mentioned earlier, the large and small intestines can also be affected by endometriosis. Endometrial growths can cause obstruction to the bladder or bowel, causing increased constipation in the large bowel, which gets worse at menses. It is often accompanied by a sharp cramp, and the urgent need to go to the bathroom, even when little urine or feces is eliminated. In the small intestine, this endometrial blockage may be associated with lower-abdominal pain, abdominal swelling, and vomiting.
Many women who have endometriosis suffer silently for a long time before seeking treatment, believing that pain is “normal” during menstruation or sexual intercourse. Sadly, the average age at diagnosis is 27, which means that most women have needlessly tolerated that pain and suffering for 10 years or more prior to diagnosis!
What’s worse is that endometriosis is also a leading cause of female infertility. Many infertile women with endometriosis report experiencing debilitating pain during their periods as teenagers, but they were never diagnosed or were misdiagnosed, typically with Irritable Bowel Syndrome (IBS) or Pelvic Inflammatory Disease (PID). A delay in the proper diagnosis and treatment of endometriosis can be a life-altering mistake for those who wish to become pregnant.
Despite copious advances in medical diagnostic technology, a confirmed endometriosis diagnosis still requires surgical biopsy. This is typically performed as a laparoscopy, in which the doctor inserts a surgical viewing tube into a small incision near the navel.
For more severe or advanced cases, the doctor may suggest a laparotomy, which involves opening the belly with a larger incision. With either procedure, the doctor can begin removing implants or growths while viewing the endometriosis, so treatment can essentially begin during diagnosis.
After the removal of any visible and accessible endometrial growths, further treatment of endometriosis is a complex subject. The type of treatment suggested will depend on many factors, including the woman’s age, severity of symptoms, the location and extent of the endometriosis, and future plans for having children.
While not exactly considered to be a “treatment” for endometriosis, some women report success with controlling their symptoms by adhering to an anti-inflammatory diet and paying close attention to food allergies. As previously discussed, addressing a Candida overgrowth also helps curb endometriosis.
Both pregnancy and menopause tend to cause endometrial growths to shrink, so the drugs prescribed typically create a pseudo-pregnancy or pseudo-menopause.
Birth control pills are usually the first course of treatment. However, they typically don’t relieve the pain of endometriosis, and they have been identified as a significant contributor to yeast overgrowth.
Stronger drugs may be prescribed in more severe cases. Danazol (an androgen similar to testosterone) shrinks and “dries up” the endometrial implants. It also stops ovulation, preventing the egg from bursting out its follicular sac. Without a burst follicle, no progesterone is produced, which prevents the shedding of endometrial tissue. Because danazol is known to cause bloating, weight gain, irritability, depression, acne, muscle cramps, and masculinizing effects (such as deepening of the voice, as well as facial and chest hair growth, that in some cases are irreversible), it is recommended that it not be taken for more than nine months. Although considered to be one of the most effective treatments, many of the women who have taken danazol experience a recurrence of the disease within three years.
Gonadotropin releasing hormone agonists (GnRH-a), such as Lupron®, are another type of drug that suppress hormone production to prevent ovulation and menstruation. Although these types of drugs appear to have milder side effects than danazol, they have a high rate of recurrence, and typically are not prescribed for more than six months. These types of drugs are used temporarily to shrink implants prior to surgery (or pregnancy) and sometimes after surgery, as is danazol.
Aromatase inhibitors, such as Arimidex®, are also being used to temporarily suppress hormone production, preventing ovulation and menstruation. Little is known about their long-term use, or the rate of endometriosis recurrence at this time.
Other drugs that are directed at inflammation or cell proliferation are also being investigated for the treatment of endometriosis, but none have proven to be remarkably effective at this point.
Some practitioners believe
that endometriosis reflects a
condition of extreme estrogen
dominance, with an underlying
cause of progesterone
deficiency. In his book Natural
Progesterone: The Multiple
Roles of a Remarkable Hormone,
Dr. John R. Lee wrote of his
success in treating patients
with progesterone. Patients
with mild to moderate endometriosis
bioidentical progesterone from
day 10 to day 26 of their cycle,
increasing the dose until
their pelvic pain diminishes.
They continued with that
dose for three to five years
before gradually lowering it.
The progesterone treatment considerably reduced their
menstrual flow, which gave
their bodies the time it needed
to heal the endometriosis
lesions. If the pain returned
after ceasing progesterone
treatment, some patients
continued the treatment until
none of Dr. Lee’s patients
had to resort to surgery when
following the treatment regimen.
The hormone focus is typically on the imbalance between estrogen and progesterone, but endometriosis sufferers also tend to display disruptions of insulin and glucose. Exaggerated levels of insulin can actually produce seizures of the fallopian tubes and the gastrointestinal muscles, leading to significant pain.
The imbalance of estrogen and progesterone can also influence thyroid activity, potentially adding the symptoms of hypothyroidism to the condition. As such, achieving and maintaining optimal hormone balance can influence the treatment of endometriosis.
Hysterectomy, or removal of the uterus, should be considered only as a last resort. While it may (eventually) bring some pain relief, it is not a cure for endometriosis. In the long run, the former victim of endometriosis is likely to suffer from other serious life-long consequences due to the lack of hormone production. And, ironically, adhesions and endometrial growths persist even after hysterectomy for some women.
If you have severe pain, or know someone who is suffering in this way, we encourage you to learn as much as you can about endometriosis. With that knowledge, you will be better prepared to work with a healthcare professional to alleviate the pain.
One of the best resources available to you is the Endometriosis Association, a non-profit, self-help organization dedicated to offering support and help to those affected by endometriosis:
Endometriosis Association International Headquarters
8585 N. 76th Place, Milwaukee, WI 53223 USA
phone 414.355.2200 | fax 414.355.6065
- Endometriosis : The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg & the Endometriosis Association; McGraw-Hill; New York, NY; 2004.
- The Yeast Connection Handbook by William Crook, MD; Professional Books, Inc.; Jackson, TN; 2002.
- Natural Progesterone: The Multiple Roles of a Remarkable Hormone by John R. Lee, MD; BLL Publishing; Sebastopol, CA; 1993.
- Interview with Mary Lou Ballweg of the Endometriosis Association, February 2013.