Endometriosis is a disease primarily of the female
reproductive system that is often misdiagnosed, and the result of a misdiagnosis
can have devastating consequences to the sufferer. "Endometriosis is defined
as the abnormal growth of endometrial cells - the same cells that make up the
lining of the uterus and are shed monthly in the menstrual process - outside the
uterus" (Schrotenboer and Subak-Sharpe, 74). These wayward cells
can position themselves in the lower abdomen on areas such as the female organs
and the stomach, and occasionally they can be found in such remote places as the
lungs. On these locations the cells act as though they are uterine cells, adjusting
to the changing hormone levels of the menstrual cycle. But, unlike uterine cells,
they have no passage-way out of the body so they stay where they are and continue
their cycle, causing scarring and adhesions as the body attempts to protect itself
from the harm. (Schrotenboer and Subak-Sharpe, et al., 74-76). It
is estimated that 5.5 million women have endometriosis in the United States and
Canada. (Nezhat, xi)
Endometriosis is categorized and diagnosed in four stages based on location(s)
affected: Stage I, or minimal, disease (superficial endometriosis, filmy adhesions);
Stage II, or mild, disease (superficial and deep endometriosis, filmy adhesions);
Stage III, or moderate, disease (superficial and deep endometriosis, filmy and
dense adhesions) and Stage IV, or severe, disease (superficial and deep endometriosis,
dense adhesions). Even though the stages may seem similar, the sizes and number
of areas diseased indicate diagnosis. (Breitkopf and Bakoulis, 59)
Since misdiagnosis often occurs with endometriosis, a woman should be concerned
if she exhibits the symptoms associated with the disease. Symptoms can include
pelvic pain, painful intercourse, inability to get pregnant, atypical periods,
nausea, vomiting, exhaustion, bladder problems, frequent infections, dizziness,
painful defecation, lower backaches, irritable bowels, other stomach problems,
and low-grade fever. These disturbances are usually, but not always, cyclic
in conjunction with menstruation. It would seem that these symptoms should help
to ensure a proper diagnosis, but there could be different reasons for the discomforts
other than endometriosis. It is also important to note, at this point, that
not all women with the disease suffer from symptoms, even in Stage IV.
(Ballweg, et al., 16) For example, some women don't discover that they
have the disease until they try to get pregnant and cannot, or their doctor
discovers the disease's presence during an unrelated type of abdominal surgery
such as tubal ligation (a voluntary procedure that prevents women from getting
pregnant).
Even though some women with endometriosis are asymptomatic, pain plays a large
role in a significant percentage of women with the disease. Therefore, it is
important to give special recognition to this, at times, crippling pain. Kay
Ellen Hurlbutt, R.N.-C, M.S.N., F.N.P., states:
Pain was reported to interfere in some way with all aspects of activities
of daily living. Most frequently reported, 78 percent, was interference with
sleep. Women frequently reported difficulty falling asleep because of the pain
or being awakened from sleep by the pain. This finding is significant because
fatigue tends to potentiate the severity of pain. (Hurlbutt, 269)
She writes more on the pain caused by endometriosis: A questionnaire distributed
to 100 randomly selected members of the Endometriosis Association, and participated
in by 68 of the 100, showed the following results: pain reported by 100%; 1-2
days prior to cycle 71%; mid-cycle 47%; other times 40%; pain throughout 20%;
and intermittent pain with no pattern around 7%. Since the onset of pain, 81%
reported pain was progressive. The pain was mostly, but not exclusively, abdominal.
(Hurlbutt, 268) Not only can this pain be tormenting, it manifests
itself in other ways:
Respondents were asked to describe their moods and feelings when experiencing
pain. Eighty-four percent reported feeling depressed, 75 percent irritable,
63 percent experienced mood swings, 54 percent reported feeling anxious, 53
percent angry, 51 percent negative, 43 percent helpless, 35 percent fearful
and powerless, 32 percent worried, 31 percent insecure, and 19 percent hopeless.
(Hurlbutt, 270)
This is one woman's experience:
I have always had problems with my periods. Till I was diagnosed, I never
knew when I would get my period. I would always know how it would be. It always
lasted seven days, severe cramps, back aches, headaches, leg cramps, bloating.
Incredibly heavy flow, with a lot of clotting. My gyn would only pat me on
the back and tell me I was just one of the unfortunate ones.
Endometriosis has been called husbanditis. Bedridden sufferers of the
disease were thought to be refusing their husband's affections. These women
were often treated with medications for relaxation and to relieve their discomfort.
In more extreme cases, they were given hysterectomies. Today small improvement
has been made. Despite the fact that diagnosis is more prevalent today, it is
usually found in the late stages when damage has already been done. Many women
are still being told that their symptoms are all in their head, and when the
disease is properly diagnosed it is usually after other physicians have missed
the diagnosis over a long period of time as told in this woman's story (Maleskey
and Inlander, 116-117):
I can tell you, I went to 10 doctors and had 10 different diagnosis
until one came up with endo. You can't believe how relieved I was! I had everything
from a pulled muscle, to "you need to have a baby or a hysterectomy,"
to bladder infections, to kidney stones, to "it's just cramps," to
ovarian cysts... the list goes on.
Barbara Eck Menning, Founder of RESOLVE, The Infertility Support Group, writes,
"Even though endometriosis is a disease seen in older women, it may have
been present for years, causing painful periods. Doctors used to pat women on
the head and tell them that menstrual discomfort was normal and a small price
to pay for eventual motherhood" (Menning, 54). One woman writes:
Around [the age] 21 or 22, I was referred to a psychiatrist that dealt
in psychosomatic pain as my S.O. [significant other] (at the time) and my doctor
didn't see a "real" basis for these new pains. A week or so after
the first psychiatrist appointment, I had a laparoscopy [diagnostic surgery
discussed later] "just to check" and they found the endometriosis.
I refused to go back to the psychiatrist now that my pain was acknowledged as
real.
There can also be financial repercussions associated with a diagnosis of endometriosis
as told by another woman:
At some point a couple of years ago I toyed with the idea of filing a malpractice
suit against that first doctor. I'm not a litigious money grubber. But I have
been financially hurt to a great degree (I only had insurance off and on during
those early years: I was a college student with no insurance). Danazol [treatment
medication] is expensive! Biopsies are expensive! Not to mention that had
this been caught sooner (when I knew there was something worse wrong with
me more than hemorrhoids), things might have been different.
Looking at the presence of pain, pain with intercourse, symptoms of pelvic
inflammatory disease and/or infertility, may help gain some insight into why
endometriosis is difficult to diagnose.
Menstrual cramps are a common complaint for many women, but it is difficult
for a physician to decide just how bad the cramps are, and what could be causing
them. Even severe pain does not denote the presence of endometriosis. Because
of this, diagnostic surgery to investigate cause for pain may be delayed. (Breitkopf
and Bakoulis, 68).
Pain with intercourse is also difficult to diagnose, because it is relative,
can be emotional, can be physical, or it can be all of the above. The doctor
must decide if the patient is experiencing a change in her life such as a new
partner after years in the same relationship or some other personal anomaly.
(Breitkopf and Bakoulis, 68-69)
Endometriosis can be mistaken for pelvic inflammatory disease. Dr. Kathryn
Schrotenboer writes:
In some instances, the signs of endometriosis may be similar to those
of pelvic inflammatory disease, a serious infection involving the pelvic organs.
It is not unusual for a woman to undergo antibiotic treatment for pelvic inflammatory
disease and later discover that the problem is really endometriosis. Therefore,
if a woman is treated for pelvic inflammatory disease without improvement, she
should be examined for endometriosis. (Schrotenboer and Subak-Sharpe,
77-78)
The only problem with this train of thought is that if a woman has symptoms
of PID (pelvic inflammatory disease) and is treated, she may feel better leading
her and her doctor to believe she is better. But endometriosis, as we've learned,
is cyclic. The symptoms may pass anyway, and the patient still has not been
properly diagnosed. Testimony from a woman with endometriosis reveals:
During the years before my diagnosis of severe and aggressive endometriosis,
I was treated numerous times for pelvic inflammatory disease. My follow-up examinations
always indicated that the tenderness in my abdomen had improved and that the
medications prescribed must have worked. However, results from my laparoscopy
revealed that I did not show any evidence of infection, past or present.
Endometriosis can be suspected if a woman has trouble getting pregnant, but
infertility itself is a perplexing condition. A patient may have no physical
findings, yet cannot become pregnant. Endometriosis is among various problems
that can cause infertility. (Breitkopf and Bakoulis, 69) This is
how one woman described her experience with her doctor:
He kept telling me I had "irritable bowel" syndrome. Then
I got a positive pregnancy test - followed by 6 weeks of bleeding. It turned
out to be a luteal cyst causing a fake hormone/positive pregnancy test. However,
I didn't know this until a year or so later and at the time my GP kept saying,
"Well at least you know you can conceive." I tried for another 6 months
and then went to my doctor, thumped the table and said, "Why can't I get
pregnant?" Only then would he refer me on to a gynecologist. Within 6 weeks
I had a laparoscopy and confirmed endometriosis, adhesions and blocked tubes.
So how do doctors diagnose endometriosis? This question is important because,
as with any disease, early diagnosis can help to prevent or delay its damaging
affects. There are several ways doctors establish the presence of the disease.
Doctors may suspect endometriosis if a woman's pelvic exam and biography indicate
a possible problem. During the exam a doctor may discover small lumps on the
uterus and near the lower area of the large bowel, and the patient may experience
discomfort when these areas are touched. However, these symptoms can also be
signs of other non-cancerous uterine growths. (Stewart, et al., 649-650).
Timing of pelvic exams is also important.
Since the symptoms of endometriosis vary considerably from woman to woman,
as do the physical manifestations, definite diagnosis generally requires a more
extensive procedure than the usual pelvic examination. Even so, a pelvic examination
- especially at some point during the menstrual period, when the condition is
its most exaggerated - may find typical signs pointing to endometriosis.
(Schrotenboer and Subak-Sharpe, 77)
Betty Jennings, R.N., C.N.M., M.S.N., contends, "Pelvic findings may be
typical of endometriosis. On the other hand, minimal disease can result in a
perfectly normal exam" (Jennings, 123). However, this is not
always the case. A doctor does not always feel abnormalities characteristic
of Stage IV endometriosis, even when informed by the patient of symptoms
being present. Here is one woman's story:
Turns out that I had a chocolate [blood filled] cyst inside my left
ovary and it had ruptured, tearing my ovary open in the process. Oddly, I had
had a pelvic exam just two weeks earlier and was pronounced just fine.
It is also important for a woman to find a doctor that she feels comfortable
talking with and who will listen to her concerns and symptoms. However, this
does not always ensure an accurate diagnosis if the doctor does not understand
the disease. For this reason it is important that women educate themselves on
their symptoms and seek a second opinion if necessary. The medical community
plays an important role as well:
Whenever a woman complains of abnormal cycles, several possibilities must
be considered: pregnancy with first trimester bleeding, cervical pathology,
endometrial pathology, endometriosis, pelvic inflammatory disease, coagulopathy,
and hormonal imbalance resulting in dysfunctional uterine bleeding. After all
pathology has been excluded and a woman's overall health status ascertained,
women may be reassured as to the wide range of normal that characterizes the
menstrual cycle. (Betty Jennings, 107)
(Pathology is defined in Webster's New World Dictionary as the branch
of medicine that deals with the nature of disease... any abnormal variation
from a sound condition.)
An ultrasound device, used vaginally by a skilled physician or technician,
can be indispensable in diagnosing large cysts and other characteristics of
progressing endometriosis. The ultrasonic sound waves can be projected through
the pelvic area in search of possible abnormalities. The device can locate masses
compassing 2 cm. to 18 cm. Even though severe cases of endometriosis may not
be clear using the ultrasound due to congestion, abnormalities will still be
present. Because implants of endometriosis can be smaller than 2 cm., ultrasounds
can miss some instances of the disease. (McDonough, 258-262) But
as an inexpensive and pain-free procedure the ultrasound, performed by a competent
medical person, is well worth the time as told here:
(Around this time [right before her diagnosis], I joined the Endometriosis
Association and was reading all I could find about endo.) The specialist's next
appointment was in a month. Meanwhile, I had an ultrasound, which showed a 13
cm cyst (about 5 inches in diameter). The ultrasound technician must have been
surprised at how happy I was to see such a bona-fide abnormality in my body.
It's undeniable now, I thought.
Researchers are looking into a blood test to assist in examining women with
symptoms of endometriosis. CA-125 is a cell surface protein found in pelvic
organs that appears to be elevated in cases of moderate or severe endometriosis.
Some studies disclaim these findings, but as Sue Deutsch writes, work done at
the Bowman Gray School of Medicine in Winston-Salem, North Carolina, found an
increased level of the protein in 73% of women with moderate disease and 100%
of women with severe endometriosis. It was also found that there was less CA-125
in treated cases of the disorder. (Deutsch, 232) It should, however, be noted
that any ovarian cyst can have high levels of CA125. Dr. Mark Perloe
at Georgia Reproductive Specialists believes CA125 testing shows the most promise
in cases of severe disease and in instances where the reoccurance of endometriosis.
The laparoscope is a surgical tool that can be used for definite diagnosis
of endometriosis. It is a slender, unbending fiber-optic tube approximately
one foot long with a lens that allows doctors to view the pelvic cavity and
surrounding areas. Laparoscopy, when used correctly, is usually 100% accurate
in diagnosing endometriosis.
The procedure does, however, require anesthesia, some incision(s) and a period
of recuperation. (Breitkopf and Bakoulis, 70-71) When discussing surgery, there
is also a question as to which method of removing the disease is more effective,
excising or lazoring, once endometriosis is found. The patient then needs to
decide whether or not to begin hormonal therapy following a positive diagnosis,
which does have some side affects.
As seen so far, endometriosis is not an easy disease to diagnose, and the
only definite diagnosis is made though surgery. Despite the fact that surgery
is intimidating for most people, diagnostic laparoscopy can detect actual disease,
and in the cases where abnormalities are present, surgical correction can be
done at the same time as the procedure. The discomfort of surgery is usually
accepted for physical evidence of symptoms:
For most women with endometriosis, simply having their case diagnosed brings
immense relief, emotionally as well as physically. After suffering for years
from a condition with vague symptoms and no name, patients are relieved to gain
at least some understanding of what the mysterious disorder is and to know that
treatment will alleviate some of the painful symptoms. (Breitkopf and
Bakoulis, 85-85)
A woman writes, "Previous to surgery I was never diagnosed as having endo.
It was a word unlike the many other diagnostic words that had been hurled at
me over the years (Ileitis, Crohn's Disease, Multiple Sclerosis and more, many
more)."
The cause of endometriosis is an enigma. It is not known why some woman suffer
with endometriosis while other woman appear to be perfectly healthy:
One of the most baffling things about endometriosis is that no one knows how
it starts - how or why substance resembling the lining of the uterus and having
a specific function within that organ grows in other parts of the body where
it clearly is not needed. This is one of the first questions most patients ask
me, and I can respond only by telling them the theories of what may cause endometriosis.
If doctors could tell their patients why it occurs, we would certainly be a
lot closer to understanding how to prevent and treat the condition. (Breitkopf
and Bakoulis, 39)
Following are theories as to why some woman are more susceptible than others:
There is the retrograde bleeding theory. This theory implies that retrograde
(backward) bleeding through the fallopian tubes during menstruation causes endometriosis.
"Studies today show that women who have obstructions of the lower genital
tract that might cause menstrual "back up," such as vaginal and uterine
infections, have higher rates of endometriosis than the general population of
woman" (Breitkopf and Bakoulis, 42). But since a majority
of women experience some degree of retrograde bleeding and don't get endometriosis,
this theory could not be proven. (Breitkopf and Bakoulis, 42-43)
There is the change in cells theory whereby a change in cells causes endometriosis.
Like retrograde bleeding, these changes could be a result of chronic infections.
This theory is also supported in the cases of men with endometriosis who were
taking large amounts of estrogen, and estrogen can cause cell changes. There
is also more incidence of endometriosis in females whose mothers were treated
with the DES (diethylstilbestrol) hormone during pregnancy and in women who
have pain with menstruation. It is the elevated amount of estrogen typical in
these two circumstances that may cause endometriosis. Research is currently
being done on other conditions that could cause cell changes. (Breitkopf
and Bakoulis, 45-46)
Some researchers theorize that cell changes caused by external chemicals can
induce endometriosis. Research has been done on women who have had surgery,
such as Cesarean, but studies were inconclusive as to whether this exposure
could cause the disease. (Breitkopf and Bakoulis, 46-47)
Some researchers suggest that women with susceptible immune systems from birth
may be more vulnerable to endometriosis. This theory is further supported by
hereditary factors that seem consistent with the disease. Lyle J. Breitkopf,
M.D., and Marion Gordon Bakoulis write:
If this theory ever proves true, the fact would form the "missing
link" in completing Sampson's retrograde bleeding theory. As we have suggested,
if retrograde bleeding occurs in most women, then most of them must also have
a built-in mechanism that rejects endometrial fluid outside the uterus - otherwise
most women would develop endometriosis. (Breitkopf and Bakoulis, 48)
Because of the emotional and physical damage caused by endometriosis, improvements
on the doctor/patient level need to be made. Following is one example of the
complications that can result from endometriosis:
I was under [surgery] for 5 hours because I had Stage IV endo *everywhere*.
Paul [her husband] was so worried in the waiting room because we thought I'd
only be under for an hour. Sorry for the graphical nature of this, but my intestines
were kinked and grown to my chest wall and all my organs were *glued* together
and covered with scar tissue. My ovaries were grown to my uterus and completely
obscured, my uterus was grown to the back wall, my intestines were grown to
my sides.
Another story resounds the importance of doctor/patient discipline:
It's clear from the damage to my reproductive organs that the endo
had been going its route for some time. Why couldn't my caretakers have suspected
this from the symptoms that I presented? Why wasn't I better informed so I would
have suspected myself that something bad could potentially be happening with
my body? It just isn't a fair disease.
Like most diseases, endometriosis is not fair. As we have seen, it can rob
a woman of her ability to have children, it can cause pain that severely interrupts
everyday existence, and these heartaches are further frustrated by the numerous
misdiagnoses that appear to be almost acceptable in the medical community. For
this reason, woman need to become more aware of their bodies and doctors need
to listen better to the symptoms of endometriosis. It is also vital that women
take an active role in the medical treatment they are receiving and force doctors
to heed concerns. The more women speak out, the more powerful they become. For
the fight against rampant misdiagnosis of endometriosis, women must be armed
with knowledge or the continued injustice served its victims will keep the apathy
alive and well.
Bibliography
Ballweg, M. L. (1987). Endometriosis: The Basics. What is Endometriosis?
In M. L. Ballweg and the Endometriosis Association, Overcoming Endometriosis.
New York: Congdon & Weed.
Breitkopf, L. J., & Bakoulis, M. G. (1988). Coping With Endometriosis.
New York: Prentice Hall Press.
Hurlbutt, K. E. (1987). Report on Pain Management in Women with Endometriosis.
In M. L. Ballweg and the Endometriosis Association, Overcoming Endometriosis.
New York: Congdon & Weed.
Jennings, B. (1982). Physiology and Life Stages of the Menstrual Cycle. In
L. Sonstegard et al., Women's Health Volume I Ambulatory Care.
New York: Grune & Stratton.
Maleskey, G., & Inlander, C. B. (1991). Procedures and Conditions: All
the Facts, from Pap Smears to Breast Cancer. In Take This Book to the Gynecologist
with You. New York: Addison-Wesley Publishing.
McDonough, S. (1987). Ultrasound in Diagnosis of Endometriosis. In M. L. Ballweg
and the Endometriosis Association, Overcoming Endometriosis. New York:
Congdon & Weed.
Menning, B. E. (1988). Infertility A Guide for the Childless Couple
(2nd ed.). New York: Prentice Hall Press.
Nezhat, C. (1987). Foreward. In M. L. Ballweg and the Endometriosis Association,
Overcoming Endometriosis. New York: Congdon & Weed.
Schrotenboer, Dr. K., & Subak-Sharpe, G. J. (1981). Freedom from
Menstrual Cramps. New York: Pocket Books.
Stewart, F. M.D., et al. (1987). Understanding Your Body. New York:
Bantam Books.
Special thanks to the women who shared their stories and to Mark Perloe,
MD for taking the time to offer his thoughts on this paper.
