The Injustice of Endometriosis—Like Justice—Is Blind

There are medical conditions unique to women that can be prevented. Good hygiene helps prevent infections; good nutrition keeps the menstrual cycle consistent; avoiding promiscuous sexual practices can prevent acquiring a sexually transmitted disease (“STD” or “STI”—sexually transmitted infection). One thing, however, that has no relationship to how good a protector you are of your own body is endometriosis.

What Is Endometriosis, Exactly?

Endometriosis is named after the word “endometrium.” The endometrium is one of the layers of your uterus—the innermost layer—which is that part that builds up each month during your menstrual cycle and then sloughs away if pregnancy does not occur (turning into the bloody tissue fragments you see as your “period”). So, endometriosis means a condition that involves the endometrium.

The difference between the endometrium of your uterus and endometriosis is that the endometrium of your uterus is where it is supposed to be; endometriosis, however, is endometrial tissue in places other than where it is supposed to be. It can be sitting in your pelvis, on your ovaries, on your bowel, or on your bladder and other places. Thus, endometriosis, exactly, is endometrial tissue in places other than where endometrial tissue is supposed to be—your uterus.

Endometrium vs Endometriosis: Location Is Everything

So what? It’s normal tissue, right?

The problem is that this is tissue which 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 which 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 endometrium you shed each month is like the endometrial tissue that may be sitting in your abdomen or on your bowel, there is a big difference. Endometriosis is the pathological state that exists because of this tissue trapped inside your body. It is not shed and then discarded on a pad or tampon, but remains in place. Worse, since it is bloody, it is very irritating to the tissue that surrounds it. It causes two major problems: an inflammatory reaction that can cause pain and the release of chemicals that can launch an immunological response.

The Inflammatory Response of Endometriosis

Blood is very irritating to all tissues except in the blood vessels themselves which contain it. When blood ends up in or on other tissue, 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 cause blood to cause a hematoma (bruise) to the surrounding areas that will be very sensitive. The bloody nature of menstrual tissue is no exception, and the local reaction from the tissues exposed to it is quite dramatic. The inflammation provokes pain receptors to fire, which then signals the body to launch the immunological response. While the immunological response is far-reaching, just the local inflammatory response can be debilitating, causing dull, burning pain in the pelvis, especially during your period. (Remember the cyclic nature of this tissue—during your period is when the menstrual tissue becomes its messiest and most irritating.

The Immunological Response of Endometriosis

Endometriosis is tissue that is not welcome other than where it’s 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 can interfere with conception, should you be trying to get pregnant. (Endometriosis is an infamous and important 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. An abscess is a good example of this. If you have an infection in your skin, you may witness the development of an abscess. But the abscess is not the infection; instead, it is the infection walled off by with the membranes of 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 then takes place 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 otherwise mobile tissue, like bowel and/or bowel fat, migrating to the area and covering it over. The problem here is that free-floating 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, feces—trying to negotiate this corner—will distend the stuck portion. In bowel, distention is about the only way to make it hurt, which is why babies suffer so much with colic. This type of colicky pain is no different, except in its severity (much worse) and its frequency (up to continuous in some cases).

Pain—the Biggest Red Flag That You Might Have Endometriosis

There are two sources of pain associated with endometriosis:

1. Localized inflammatory pain. The pain of inflammation uses certain types of pain nerve fibers—the kind that give a burning, throbbing sensation and which transmit these signals very slowly. This is in contrast to, say, hitting your thumb with a hammer, whose pain response is very sharp, stabbing, and very fast.
2. Adhesions. Above, in discussing things that get stuck to areas of endometriosis, such abnormal “adhering” tissues are called “adhesions.” When tissues, so stuck, cannot function normally, you will notice symptoms when using these organs. For instance, if there is endometriosis on your bowel, you’ll not only experience the burning sensation of the localized inflammation, but also the sharp colicky pain as feces make their way down your GI tract and encounter the partial obstruction a kink can make; or severe, sharp pain in your rectum when having a bowel movement. If there is endometriosis involving your bladder, the same things can occur with both filling and emptying your bladder.

When the active adhesion process cools down over time, the result is scarring in that area by which the adhesions remain.

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 possible endometriosis. However, 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. Such women will have no idea there is endometriosis until they undergo a laparoscopy for infertility, but by then it 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 can kink or block your fallopian tubes or ovaries such that an egg cannot be released (“ovulation”) or travel successfully down the tube for fertilization; similarly, a block 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, the ability to have children and a family is the 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 is 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 of this tissue failing to migrate down to its proper position during your embryonic period. 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 endometrial lining your inner uterus does not fall away through your vagina, but instead is forced in the opposite direction–through your fallopian tubes, where it can disperse into your pelvis. While that seems plausible, it doesn’t explain how some women can have endometriosis in their noses (nose-bleeds with their periods) or in their lungs (coughing up blood whenever they have their periods) or even the brain (having mini-strokes during each period). This is all very, very creepy, and fortunately very, very rare!

Are There Different Types of Endometriosis?

Endometrial cells are 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 your rectum and your 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 an eye out for endometriosis. Your future fertility may depend on how vigilant you are. True, you may not have it and may 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, which is looking into your abdomen with a lighted scope under general anesthesia. Many gynecologists think they are being 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 can begin.

The other diagnostic step that may be helpful is ultrasound, although this usually cannot identify endometriosis unless it is sizeable, such as an endometrial cyst of the ovary (an endometrioma, or “chocolate,” cyst). Certainly, an 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 if your physician feels all of it had been eradicated. Nevertheless, most women are able to eradicate it depending on the specialist they use. (You might be best served by a doctor who does only endometriosis cases. There is no such thing as an official endometriosis specialist. Any gynecologist is trained to deal with it, but going to someone who does only this is the closest you’re going to get to an “official” specialist.)

Treatment includes the following, from most conservative to most aggressive:

Hormonal Suppression

• Using hormones to produce a reversible menopause-like state so that the endometriosis is starved of hormonal stimulation. The problem with this is that women younger than menopausal age do not tolerate the symptoms of menopause well. (Even many menopausal women don’t!) This usually involves using gonadotropin stimulators (GnRH agonists), which are cyclic hormones that act at the brain locations of your menstrual cycle—the hypothalamus—to overshoot the stimulation for your menstrual cycle so that its precursors become depleted. This results in a menopause-like state and everything that comes with it.
• Opposing your hormones with testosterone derivatives, like danazol. The problem with this is that male features may occur, such as lowering of the voice, hair growth, and smaller breasts. This is treatment from a prior generation and is not used much, if at all, today, unless it is needed as a necessary option.
• Giving progestins, usually as progesterone, which is anti-estrogenic and which is contained in the “mini-pill” oral contraceptive.
• Creating a “pseudopregnancy.” Pregnancy stops the cyclic nature of your menstrual cycle, so the pseudopregnancy of continuous (non-cyclic) birth control pills can mimic the same thing. Of course, if you were to become pregnant, nothing is necessary, but this is decidedly unlikely given the infertility that endometriosis causes.
• Aromatase Inhibitors: this is an “off-label” drug for endometriosis, reserved for the most stubborn cases; these act by opposing the production of estrogen altogether.

Surgery

• Laparoscopy: under a general anesthetic, a lighted scope (the “laparoscope”) is inserted through your navel to 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; versus pressing on and attempting to remove or destroy the endometriosis during this diagnostic procedure (converting a diagnostic procedure into a therapeutic one). Endometriosis 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 advanced minimally-invasive technique of robotic surgery, this is not often used for endometriosis.
• Robotic excision of endometriosis. [SEE BELOW]
• Hysterectomy: this is the “nuclear” option, burning your bridges, reserved for only those women who have intolerable symptoms but no pregnancy plans…ever (such as those who are finished having children). This is considered the final stop in treating endometriosis and usually involves removing the tubes and ovaries as well. While some cases of endometriosis are so stubborn that a woman can give up and resort to this, a hysterectomy is removing your 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 severe endometriosis the families they wanted.

Surgery Followed by Hormonal Suppression

The 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.

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 that have 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 do anything toward eliminating the disease. Even if the inflammation were to be totally eliminated, the endometriosis would remain, because it is a disease of your anatomy, not of any nutritional processes.

That being said, it is no secret that organized medicine has either delayed or not taken seriously the research into alternative approaches to treating 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. It may be that, while today these options haven’t been proven, one day they may be supported by research or they may even replace other treatments.

In the meantime, there is no downside to using them and you may have good results for the inflammatory pain that accompanies endometriosis with the following anti-inflammatory supplements:

• SAM-e (S-adenosylmethionine)
• Boswellia serrata (Indian frankincense)
• Capsaicin
• Turmeric/Curcumin
• Soy products/Avocado
• Cat’s Claw
• Omega-3 fatty acids (EPA, DHA, in fish oil)
• Gamma Linolenic Acid (Omega-6 fatty acid “GLA”)
• Ginger

Coming to a Rational Decision About Which Treatment You Should Seek

Using the conservative approaches (hormone suppression/manipulation) does not have the successful track record that surgical excision does, but the hormonal suppression added after surgery increases the odds of success even more than only surgery. Sometimes conservative treatment to avoid surgery is successful, but otherwise, you may be just delaying the inevitable surgery while wasting time during which the endometriosis can advance.

If the whole reason for avoiding surgery is to avoid risk, it would make sense that you would want to avoid a second surgery. Therefore, if you have accepted that surgery is necessary for a diagnosis, wouldn’t you want to include in that very surgery the maximum effort to remove the endometriosis? If your answer is yes, then shouldn’t you consider jumping to the most advanced surgery with the most capabilities that there is? That would mean using robot-assisted surgery for both the diagnosis and treatment.

Simple laparoscopy can address simpler cases of endometriosis, but when there is stuck bowel or blockage of the entire bottom of your pelvis (called a “frozen pelvis”), nothing is better than the robot. The robot allows for stereoscopic, 3-D views and its articulating rods allow the surgeon to use 2-hand and 10-finger-dexterity while operating from any angle—even from the bottom of your pelvis. This is the best of all worlds: unlimited exposure, the most delicate of surgical technique, minimum manipulation of tissue, and minimally invasive approach that significantly decreases the pain and time for recovery, and all usually in a same-day surgery.

Conclusion

Here are the simple but important takeaway messages about endometriosis:

• You have no special protection that you don’t have endometriosis.
• If you have painful periods (ones that interfere with daily activities), painful sex, painful bowel movements or bladder-emptying, or pelvic or back pain, you need to report this to your doctor.
• If you have any abdominal/pelvic symptoms, at all, constant or intermittent, you are obligated to rule out endometriosis if you want 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.