What Is Endometriosis, Exactly?
Certain medical conditions women might face in their lifetimes are preventable. Good hygiene helps prevent infections; good nutrition keeps the menstrual cycle consistent; practicing safe sex can prevent acquiring a sexually transmitted infection. However, one thing that seems to have no relationship to how good a protector you are of your own body is endometriosis.
Endometriosis is named after the word endometrium. The endometrium is the innermost layer of your uterus—the part that builds up each month during your menstrual cycle and then sloughs away if pregnancy does not occur, becoming the blood and tissue fragments you see as your period. So, endometriosis is a condition that involves the endometrium.
The difference between the normal endometrial layer of your uterus and endometriosis is that the endometrium is where it is supposed to be—inside the uterus. Endometriosis, however, is endometrial tissue found in other places. It can be sitting in your pelvis or on your ovaries, intestines, bladder, and sometimes even in other locations. Thus, endometriosis is the condition in which endometrial tissue is located outside of your uterus.
Endometrium vs. Endometriosis: Location Is Everything
So what? It’s normal tissue, right?
The problem is that this tissue is hormonally responsive: it builds up, decays, falls apart, and then exits your uterus through the vagina. Your menstrual cycle is just that—a cycle. It repeats over and over. The normally exiting endometrium that you see as bloody menstrual debris ends up on a pad or tampon to be discarded, and then you go about your business. The following month repeats the process.
Although the endometrial tissue that may be sitting in your lower abdomen somewhere is much like the endometrium you shed each month, there is a big difference. Endometriosis is the pathological state that exists because this tissue is trapped inside your body. It is shed monthly like the normal endometrium, but it has nowhere to go. Worse, since it is bloody, it is very irritating to the surrounding tissue. And this typically leads to two major problems: an inflammatory reaction that results in pain and the release of chemicals that launch an immunological response.
The Inflammatory Response of Endometriosis
Blood is very irritating to all tissues, except in the blood vessels which contain it. When blood ends up in or on another tissue or body space, your body will complain. GI bleeding can cause nausea because blood irritates the stomach lining. Bleeding in the brain is a stroke in progress. Even a ruptured vein during routine blood-drawing can result in a hematoma (bruise) that will be very tender.
The bloody nature of menstrual tissue is no exception and creates a rather dramatic local reaction from the tissues exposed to it. The inflammation provokes a response from pain receptors, signaling the body to launch an active immune response. While that response is far-reaching, just the local inflammatory response can be debilitating, causing dull, burning pain in the pelvis, especially during your period when it is shedding as though it were in the uterus.
The Immunological Response of Endometriosis
Endometriosis is an unwelcome invader when it takes up residence in places where it’s not supposed to be. As such, it is seen by these tissues as foreign. Add to that the localized inflammatory reaction that endometriosis provokes, and it’s like an “all-points-bulletin” for your body to send troops to the area. These changes can cause chemical reactions that interfere with conception, should you be trying to get pregnant. Endometriosis is an infamous and significant cause of infertility.
One important immunological effect that makes endometriosis painful is the body’s tendency to want to wall off areas of inflammation or infection. A good example of this is when you have an infection in your skin, you may witness the development of an abscess. It is formed when the infection becomes walled off by membranes that enclose a collection of bacteria (alive and dead), immune cells, and fluids, which make up the abscess. It’s your body’s way of isolating bad things so they won’t get into the entire system.
At some point, the abscess will rupture and cause the infection to drain to the outside world. Healing can then begin at the site. When the outside world is inaccessible, such as with endometriosis in a body cavity like your pelvis, the body still tries to wall off this site of inflammation. It does this by migrating mobile tissue, like bowel or bowel fat, to the area and using it as a covering.
The problem here is that certain internal organs, like your bowel, are meant to remain free-floating. If there’s a portion of bowel stuck in one spot covering an area of endometriosis, stool inside the intestine—will have difficulty moving through on its way out. When that happens, it will build up and distend the stuck portion.
Distention is about the only way to make intestines hurt, which is why babies suffer so much with gas that causes colicky pain. This type of pain is no different, except it is more severe and can be continuous in some cases.
Pain—the Biggest Red Flag for Endometriosis
Usually, the way women discover that they have endometriosis is because there is pain somewhere. There are two sources of the pain associated with endometriosis:
- Localized inflammatory pain. Inflammation signals pain through certain types of nerve fibers—the kind that gives a burning, throbbing sensation and transmits these signals very slowly. This is in contrast to, say, hitting your thumb with a hammer and the pain response is sharp, stabbing, and very fast.
- Adhesions. Things that get stuck to areas of endometriosis are called adhesions. When tissues get stuck like this, you will notice symptoms with the normal functioning of these organs. For instance, if endometriosis is adhering to the outside of your intestinal wall, you’ll experience the burning sensation from that area of localized inflammation. You will also feel sharp colicky pains as feces make their way down your GI tract and encounter the partial obstruction a kink can make, or there can be severe, sharp pain in your rectum when having a bowel movement. If there is endometriosis involving your bladder, the same events can occur when filling and emptying your bladder.
When the active adhesion process cools down over time, the result is scarring in that area, and some of the symptoms initially caused by the adhesions may continue.
Again, the timing of the pain is very telling. If all of these things become worse or only happen during your period, this is highly suggestive of endometriosis. But it’s not as simple as that. Some women have NO PAIN with endometriosis. Not only does everyone feel pain differently, but it is also possible that endometriosis may involve tissue in “silent” areas that create no symptoms. Some women will have no idea they have endometriosis until they undergo a laparoscopic procedure for infertility, but by then, the condition may be far advanced.
Infertility—the Most Important Consequence of Endometriosis
While pain can be debilitating and result in lost wages, missed school, and severe compromise of social life and marital or intimate relationships, the most devastating consequence is infertility. The anatomical distortion that can occur may kink or block your fallopian tubes or ovaries such that an egg cannot be released during ovulation or travel successfully down the tube for fertilization. Similarly, an obstruction can prevent sperm from meeting the egg mid-tube for fertilization, which is where conception happens.
Endometriosis can also involve one or both ovaries and directly prevent ovulation. For many people, the ability to have children is a driving force in their lives, either now or in the future. The cruelest consequence of endometriosis is interference with this life drive.
How Does Endometriosis Happen?
If endometriosis occurs through no fault of your own, how does it even happen? Not even the experts can agree. Some say you’re born with it because this tissue fails to migrate down to its proper position during the embryonic period of development. Others say precursor endometrial cells can be carried to faraway places by your blood or lymphatic fluid.
The most accepted explanation is what is called “retrograde menstruation.” Retrograde menstruation is the concept that the inner endometrial lining of the uterus does not fall away monthly through the opening to the vagina but instead is forced in the opposite direction—through the fallopian tubes where it can disperse into the pelvis.
While that theory seems plausible, it doesn’t explain how some women can have endometriosis in their noses (nose-bleeds with their periods), in their lungs (coughing up blood whenever they have their periods), or even the brain (having mini-strokes during each period). This is all pretty creepy, and fortunately, very rare!
Are There Different Types of Endometriosis?
Endometrial cells are all the same at the microscopic level. Endometriosis is categorized according to its distribution and depth of invasion into the tissue. The worst case is what is termed deep infiltrating endometriosis, which is the most destructive to your anatomy and fertility and the most difficult to remove surgically.
- Superficial endometriosis: scattered superficial lesions on the lining of the pelvis, called the peritoneum.
- Endometrioma: an ovarian lesion, which is a cyst filled with bloody/menstrual-like debris.
- Deep infiltrating endometriosis: deeply invading endometrial tissue that can obliterate entire spaces, such as the space between the rectum and uterus.
What Are the Signs and Symptoms of Endometriosis?
- Only one bullet point here: ANY pain in the abdomen/pelvis in ANY woman at ANY time before menopause.
As described in the sections above, any burning or colicky pains during a period, between periods, or even those having no relationship with your periods, are included in the list of signs and symptoms. That is, pain any time before menopause should be explored with consideration for a diagnosis of endometriosis. Your future fertility may depend on how vigilant you are at getting help for this problem. True, you may not have it and rule it out by participating in some needless tests—but that’s a good problem.
How Is Endometriosis Diagnosed?
What makes such aggressive surveillance iffy in its payoff is that endometriosis can only be diagnosed surgically. That is, it must be seen and—if possible—biopsied for proof. This requires gaining a view of your abdominal/pelvic cavity, and that requires laparoscopy, a surgical procedure that involves taking a look into your abdomen with a lighted scope under general anesthesia.
Many gynecologists think they are prudent by being conservative, especially when it comes to surgery, which itself can have risks. However, with what’s at stake here, the benefit of even a laparoscopy that rules out endometriosis is greater than the risk; and if there is endometriosis, then help for the patient can begin.
The other diagnostic modality that may be helpful is ultrasound, although this usually cannot identify endometriosis unless it is sizable, such as an endometrial cyst of the ovary (an endometrioma or chocolate cyst). Certainly, even though it can give the clinician certain clues, ultrasound will not eliminate the need for surgery as a diagnostic step.
How is Endometriosis Treated?
Simply—if it’s there, it should go. This presents yet another difficulty. Endometriosis can be stubborn. It can also be microscopic and return to haunt you even when you’ve had a procedure, and your physician feels all of it has been eradicated.
Nevertheless, most women are able to get it all removed, depending on the specialist they use. (You might be best served by a gynecologist who does only endometriosis cases. Unfortunately, there is no such thing as an official endometriosis specialist. Any gynecologist is trained to deal with it, but going to someone who does this exclusively is the closest you’re going to get to an official specialist.)
Treatment includes the following, from most conservative to the most aggressive:
- Hormones can be used to produce a reversible menopause-like state so that the endometriosis is starved of hormonal stimulation. The problem with this approach is that women younger than menopausal age do not tolerate the symptoms of menopause well. (It’s hard enough for women going into menopause naturally!) This usually involves using gonadotropin stimulators (GnRH agonists), which are cyclic hormones that act on the hypothalamus to overshoot the stimulation of hormones for your menstrual cycle so that their precursors become depleted. This results in a menopause-like state with no periods and pretty much everything else that comes with it.
- Testosterone derivatives, like danazol, can be given to oppose the function of your natural hormones. The problem with this is that male features may occur, such as lowering of the voice, hair growth, and smaller breasts. This is the treatment from a prior generation, and it’s not used these days unless it is necessary.
- Progestins can be given, usually as progesterone, which is anti-estrogenic. It is contained in the “mini-pill” oral contraceptive.
- Hormones can be given that cause a pseudopregnancy. Since pregnancy stops the cyclic nature of your menstrual cycle, a pseudopregnancy from the continuous (non-cyclic) use of birth control pills can mimic the same thing. Of course, if you were to become pregnant, no treatment is necessary, but this is decidedly unlikely given the infertility that endometriosis causes.
- Aromatase inhibitors, an “off-label” drug for endometriosis, are reserved for the most stubborn cases. These act by opposing the production of estrogen altogether, leading to a menopause-like state.
- Laparoscopy: under a general anesthetic, a lighted scope is inserted through your navel to visualize the internal structures and identify and diagnose endometriosis. At that point—and you will have discussed these options with your surgeon prior—the plan can be to end the laparoscopy and implement one or more of the conservative methods above. Another option would be to press on and attempt to remove or destroy the endometriosis lesions during this procedure (converting a diagnostic procedure into a therapeutic one). Endometriosis tissue can be burned away or cut out during laparoscopy by a skilled surgeon.
- Laparotomy: this is “your mother’s” operation for endometriosis, involving a large abdominal incision and major surgery with retractors and hands in the abdominal cavity. With the advances of laparoscopy and the minimally-invasive technique of robotic surgery, this is now only rarely used for endometriosis.
- Robotic excision of endometriosis. [SEE BELOW]
- Hysterectomy: this is the so-called “nuclear” option, burning your bridges, reserved for only those women with intolerable symptoms but no pregnancy plans…ever. Considered the final step in treating endometriosis, this usually involves removing the tubes and ovaries as well. While some cases are so stubborn that a woman must resort to this treatment, a hysterectomy is a complete removal of the uterus, making it impossible to have a baby using artificial reproductive technology (ART), such as in vitro fertilization (IVF) and other techniques. ART has given many women with endometriosis the families they wanted.
Surgery Followed by Hormonal Suppression
Hormonal treatment of endometriosis is offered after surgical excision as an extra “insurance” step in case any microscopic sites were missed or to ward off the development of new endometriosis lesions.
Alternative Medicine and Other Approaches
Many women claim a benefit in relieving the painful symptoms of endometriosis with supplements, such as curcumin or other natural remedies with anti-inflammatory properties. A diet that is recommended includes the following:
- Increased omega-3 fats
- Limited red meat and trans fats
- Limited caffeine and alcohol
- Gluten-free foods
Many natural substances have significant anti-inflammatory properties and may help alleviate the pain but won’t cure the disease. Even if the inflammation were to be totally eliminated, the endometriosis lesions would remain because this is a disease of your anatomy, not due to nutritional processes. It is significant to note that without the inflammation, there may be little, if any, pain left.
That being said, it is no secret that up to now conventional medicine has either delayed or not taken seriously the research into alternative approaches to treating this disease. Thankfully, this error in judgment has been corrected, and now, more than ever, many legitimate studies are being conducted to judge how impactful dietary and supplemental approaches can be. While today these options haven’t yet been proven, one day, they may be supported by research or even replace other more invasive treatments.
In the meantime, there is no downside to using them with whatever other treatment you are receiving. You may find relief of the inflammatory pain that accompanies endometriosis with the following anti-inflammatory supplements:
- SAM-e (S-adenosylmethionine)
- Boswellia serrata (Indian frankincense)
- Soy products/avocado
- Cat’s claw
- Omega-3 fatty acids (EPA, DHA, in fish oil)
- Gamma-linolenic acid (omega-6 fatty acid “GLA”)
Coming to a Rational Decision About Which Treatment to Seek
Using the conservative hormonal approaches does not have the successful track record that surgical excision does, but hormonal suppression added after surgery increases the odds of success even more than surgery alone. Sometimes conservative treatment to avoid surgery is successful, but otherwise, it might just delay the inevitability of surgery, during which time the endometriosis can advance.
Simple laparoscopy can address simpler cases of endometriosis, but when there is stuck bowel or a blockage of the entire lower portion of the pelvis (called a “frozen pelvis”), robotic surgery can be very useful. The robot allows for stereoscopic, 3-D views, and its articulating rods allow the surgeon to use two-hand and ten-finger dexterity while operating from any angle—even from the bottom of the pelvis. This is the best of all worlds: unlimited exposure, the most delicate of surgical techniques, minimum tissue manipulation, and a minimally invasive approach that significantly decreases pain and recovery time for the patient.
Here are the simple but important takeaway messages about endometriosis:
- If you have painful periods that interfere with daily activities, painful sex, painful bowel movements or bladder-emptying, or chronic pelvic or back pain, you need to report this to your doctor.
- If you have any abdominal/pelvic symptoms at all, constant or intermittent, it is important to rule out endometriosis if you wish to keep your childbearing options open. Any time wasted or procrastinating could mean infertility in the future that is harder to address. If the “ticking biological clock” is an overused cliché, then endometriosis—as it pertains to fertility—is “a time bomb.”
- Many successful treatment options exist, so don’t be afraid to seek out medical care, even when family members or friends have not had good results. Each case is individual and should be handled according to the disease location and severity in combination with the patient’s life goals.