Endometriosis is what is called a “surgical” diagnosis. By this is meant that without the use of surgery it can only be suspected; with surgery, however, it can be ruled either in or out definitively, which is important to your fertility and quality of life. Because surgery often is seen as a drastic step—perhaps even one of last resort—some doctors are hesitant to advise it be done, even when endometriosis must be ruled out for the sake of future fertility. Because endometriosis is not considered a fatal or even by some a serious disease, surgery is postponed or even refused, and an official diagnosis is not made.
There are many things that can cause pain in the female pelvis, and endometriosis is just one of them. Endometriosis is often cyclic, worse at times during the cycle when its glandular tissue becomes inflamed, spreading its irritation throughout your pelvis. There are a half dozen imposters that can cause intermittent pain, too, so when the decision for surgery is weighed against other causes of this pain, endometriosis—requiring surgery for a diagnosis—may be pushed to the end of the list. This wastes time in delaying what is best treated early than late.
6 of One, a Half-Dozen of the Other
The things that can mimic the symptoms of endometriosis can tempt a physician to wait to do surgery for a definitive diagnosis. These are 6 endometriosis impostors and they can mislead a physician into thinking something other than endo, that is, other than something that requires surgery, is the problem:
1. Ovarian Cysts
Ovarian cysts are faulty ovulation processes that delay ovulation (follicular cysts) or persist as abnormal cystic structures after ovulation (luteal cysts). Either way, with the extra weight of a fluid-filled cyst pulling on the nerve-rich stalk that suspends the ovary, pain is the result. There is also an inflammatory component, leading to more of a vague distribution (instead of the pinpoint pain of the cyst). This vague pain can be similar to the pain of endometriosis, and a delay in diagnosis will occur as a doctor tries to “wait the cyst out” for its spontaneous resolution, which would be a legitimate tactic if it truly were just a cyst. In fact, birth control pills that are often given to prevent further cyst development can waste several cycles instead of getting an accurate diagnosis sooner. Confusing things is that oral hormonal contraceptives can lessen the pain and inflammation of endometriosis, fooling patient and doctor alike into thinking the diagnosis of an ovarian cyst was the correct one and the hormones are working.
Salpingitis is an infection in the fallopian tube(s), a pair of structures that are responsible for an egg traveling to the uterus (fertilized or not); they can swell with fluid or pus and this distension can throb with severe pain. The most common causes of salpingitis are sexually transmitted diseases (STDs), now called sexually transmitted infections (STIs). An even older name was pelvic inflammatory disease (PID), but this term has been discarded and replaced by the more accurate “STI.” Of the STIs, chlamydia and gonorrhea are the frequent offenders. A full course of antibiotics can take 2 weeks and, due to the cyclic nature of endometriosis, the natural cool-down timing of the disease can be mistakenly thought to represent success of the antibiotics and confirmation of the inaccurate diagnosis of infection. However, the accurate diagnosis of salpingitis is based on cultures and blood work, not a trial of antibiotics.
When the inner lining of the uterus (womb) becomes inflamed, this is called endometritis. Endometritis (very similar-sounding to endometriosis, but not similar at all!) will cause chronic pain, especially with the mechanical action of intercourse. Since endometriosis makes sex painful, one of its major symptoms, the “-osis” can sometimes be confused with the “-itis.” Endometritis is usually caused by infection—an STI or by rectal E.coli, but it can also be due to a foreign-body reaction to an IUD or even an endometrial polyp which has outgrown its blood supply and has begun becoming necrotic and inflamed.
Bowel disease causes inflammatory changes with symptoms similar to endometriosis—vague and widespread. Ulcerative colitis and Crohn’s disease, usually having been present a long time, can occasionally present as a new condition; hence, endometriosis is ignored while a gastrointestinal workup and therapeutic plan is instituted, which includes colonoscopy and imaging studies. This can result in delays of up to 6 months, which for an older woman with endometriosis may close her last window of opportunity.
5. Pelvic Adhesive Disease
When there is scarring within the pelvis and abdomen, organs that rely on unhampered movement and function can cause pain if they are adherent to other structures. For example, a loop of bowel adhered to another loop of bowel can cause a partial obstruction which will cause colicky pain when feces pass the kink. Bowel stuck to the bladder can cause pain upon filling or emptying the bladder. The pain is often sporadic, and the cyclic pain of endometriosis may appear as the colicky pain of pelvic adhesive disease and adhesions. Even more confusing, adhesions can be caused by endometriosis itself, giving one the worst of both possibilities. The difference is that adhesions from previous surgeries, previous abdominal bleeding, or infection will get better over time, whereas the adhesions from endometriosis will worsen over time; therefore, waiting adhesions out may only create a much worse dysfunction of the pelvis and abdomen due to endometriosis.
6. Pelvic Floor Spasm
The pelvic floor is made up of muscle, and this muscle takes part in many things, from sex to urinary and rectal continence to walking. Even standing will use a set muscle tone within the pelvic musculature, important in balance. The pelvis is your center of gravity and flexing and relaxing this ring of support is a constant unconscious adjustment from moment to moment. There are things, however, that can cause over-exertion of these muscles, and over-exertion will cause lactic acid buildup and spasm, just like in the calves of a marathon runner. Fear of sexual penetration can tense and over-tense them, as can a defensive splinting of them if there were previous childhood sexual abuse. Ultimately, the nerves’ blood supply is compromised, causing pain that can fire automatically as its own disease. All this results in painful intercourse and when there is referred pain to the lower abdominal wall, the symptoms can be similar to those of endometriosis. However, should the culprit actually be endometriosis, time is wasted by referral to pelvic floor physical therapy, trigger-point injections, or pain doctors. The irony of it all is that endometriosis itself can cause the splinting of your pelvic muscles and cause pelvic floor spasm, and all of the physical therapy in the world will not help until the diagnosis is accurately established via surgery.
The Point Is…
The point of this entire article is that endometriosis can only be diagnosed surgically and there are many imposters that can delay this while misguided therapies and protocols are used that can only allow the disease to progress. No woman is well served with this type of reluctance and indecision.
It is not lost on gynecologic surgeons, however, that surgery is serious business, and you are at the mercy of his or her experience in finding that Goldilocks zone between being too conservative and too aggressive.
Nevetheless, if there is pelvic pain, painful sex, or extremely painful periods, then surgery is indicated for all of the aforementioned reasons. The doctors who have done the most diagnostic surgeries, such as Dr. Ulas Bozdogan, are also best qualified to make a diagnosis other than endometriosis, because expertise in pelvic pain—across the board—is best achieved with experience in all things pelvic.