Endometriosis: The Great Masquerader



I was told I have endometriosis. What is that?

Joan wasn't initially too concerned when her menstrual cramps worsened.  After all, she always had cramps with her periods. Aleve or Advil would take away her discomfort and the cramping never really interfered with her everyday life. Now, however, it seems different. The cramps have worsened over the last year or two and now start even before her period. The cramps last longer and are more disruptive. Sometimes the Advil helps, but other times she is sidelined with pain. Over spring break, she sees her gynecologist, Dr. Seaver.

Dr. Seaver enters the exam room. "Hi Joan, how's it going? Your mother tells me that you're doing well at Penn State. That's quite an accomplishment given the number of distractions, or should I say parties, that take place there. What brings you in today?"

"I don't know," Joan begins, "It might be nothing, but my period cramps seem to be starting earlier and are more severe than they ever were before."

"Well, it may be nothing, but we’ll look into it and see what we can do to help you out," responds Dr. Seaver. Dr. Seaver proceeds to examine Joan. Her exam appears to be normal. He obtains a sample from her cervix to rule out uterine infection, and orders a pelvic ultrasound. The tests come back normal. Dr. Seaver gives Joan a call. "Joan, it's Dr. Seaver. Your scan and tests for infection were all negative. There probably isn't anything serious going on, but given the fact that you are sexually active, we will start birth control pills, which tend to make your periods lighter and less crampy. You can still take Advil or Aleve as necessary. Also, make sure you continue to use condoms. Remember, the birth control pill does not protect you against STI's."

Several months later Joan returns to Dr. Seaver's office. "Dr. Seaver, my cramps haven't decreased with the birth control pill. They're as bad as ever. What can we do about this?"

Dr. Seaver responds, "I'm afraid that you might have endometriosis. If I remember correctly, your mother was also treated for that condition, and it tends to run in families."


Endometriosis is the bane of every gynecologist’s existence. You've heard the expression "a thorn in your side." Well, this is more like a spear. OK, maybe we're getting overly dramatic. Nevertheless, it can be an extremely difficult problem for patients and their doctors.

Inside the uterus is a glandular lining referred to as the endometrium. When this tissue becomes located outside of the uterus, the condition is referred to as endometriosis. There are a number of theories explaining how it gets outside. The most common hypothesis is that pieces of endometrial tissue flow back out of the fallopian tubes during the menstrual flow and become implanted on the surfaces of the other organs in the pelvis, such as the uterus, ovaries, bladder, and bowel.  Each month during the menstrual flow, the endometrial implants bleed, causing inflammation and pain. Ultimately, scar tissue forms in affected areas. Blood from ovarian endometriosis may accumulate inside the ovary, producing a benign (noncancerous) cystic growth of the ovary, referred to as an endometrioma.

 If I have painful periods, does it mean that I have endometriosis?

A common misimpression is that everyone with painful periods has endometriosis. Many women with painful periods, or dysmenorrhea, have no definable disease (see chapter 1). This is particularly true for those who have always had painful periods. Pain is more apt to be related to endometriosis if it is recent in origin and progressively worsening. Also, pain from endometriosis typically starts a day or two before the menstrual flow begins. Often it subsides once the flow is established. The probability of having endometriosis increases if there is a family history of the disorder.


What other symptoms characterize endometriosis?

Endometriosis can produce a multitude of different symptoms, depending on its location. That is why we call it the "great masquerader." Painful periods are the most common symptom. However, it can also cause chronic pelvic pain that is not related to the menstrual cycle. Disturbances of menstruation may also occur, and infertility is often seen in conjunction with endometriosis. Painful intercourse, occurring with deep penetration, is another fairly common symptom. Endometriosis associated with the bowel can result in painful defecation, changes in bowel function, and rectal bleeding. Urinary frequency, urinary urgency, or blood in the urine may occur if the bladder is involved.

Well, by now you should be convinced that you have endometriosis: The fact that it can produce quite an array of symptoms is problematic. We have encountered many women throughout the years who have read or been told about symptoms of endometriosis and are now convinced that they must have it. In reality, most of them don't. Many of the same symptoms more commonly signal other medical disorders.


How is endometriosis diagnosed?

Joan is taken aback by Dr. Seaver’s call. "Endometri…what?"

"Endometriosis," Dr. Seaver reiterates. "It is a condition where bits of the inside lining of the uterus are implanted on the outside of your pelvic organs."

"How do you know I have that?" asks Joan.

"Well, I don't know for sure. But your history suggests that you might have the condition. Most women with functional menstrual cramps will improve with birth control pills, but you didn't. The fact that it runs in your family also makes me suspicious. I recommend that we perform a laparoscopy."

"What's a laparoscopy?" Joan asks.

"We will insert a telescope- like instrument into your abdomen under anesthesia. We can see endometriosis through the laparoscope and often treat it at the same time. Some doctors will make the diagnosis just based on history, or findings on an exam, but that isn't really a definitive way to diagnose the condition."


How is endometriosis treated?

Joan isn't thrilled about the prospect of surgery. Hoping for a different solution she asks, "Aren't there medications that we can use for this?"

"There are numerous approaches to endometriosis," Dr. Seaver begins, "but most of the medications used to treat endometriosis have significant side effects. Is it is my preference to first make sure that were dealing with endometriosis through laparoscopy." He then proceeds to educate her on the many approaches to endometriosis.  Some involve medications, usually of a hormonal nature, that reduce the endometrial implants. Surgical techniques are used to remove the abnormal tissue and adhesions.

Surgery  Since endometriosis is usually diagnosed via laparoscopy, surgery is often done at the time of diagnosis, using laparoscopic techniques. A telescopic instrument is placed through a tiny incision near the navel. Other small incisions are made, through which instruments are inserted to perform the surgery. Endometrial implants are destroyed or resected and scar tissue is removed.

Laparoscopic surgery is not always appropriate. If there is deep involvement of the bowel, ureters, or bladder, your doctor may feel that it is safer to operate through a larger incision (laparotomy). This may be more appropriate if pelvic adhesions are extensive.

Often surgical and drug treatments are combined. The most common approach is laparoscopic surgery followed by treatment with a medication called a GnRH agonist.

GnRH Agonists Because this group of medications has relatively few side effects, they are generally used as the first line of nonsurgical treatment for endometriosis. By placing a woman in a pseudomenopausal state, GnRH agonists turn off the signals that stimulate ovarian hormone production. Menstruation ceases, and the endometrial implants regress.

GnRH agonists are available in the form of injections (Lupron), implants placed under the skin (Zoladex), or as a nasal spray (Synarel). They are effective but also very expensive, which limits their use for individuals without prescription plan coverage. Common side effects include hot flashes, sweats, vaginal dryness, mood change, and headaches. More recently, low doses of hormones have been added back during treatment which has reduced the most disabling side effects (hot flashes and night sweats). Treatment is continued for 6 to 9 months. Over this time, there may be a small decrease in bone density related to the low estrogen levels. This problem seems to disappear when the treatment is finished.

Danazol  A steroid closely related to male hormones, danazol (Danocrine) decreases estrogen and progesterone production, thereby eliminating the hormonal stimulation causing the growth of the endometrial implants. In addition to stopping menstruation, the drug has many side effects, including weight gain, decreased breast size, acne, oily skin, deepening of the voice, and increased facial hair. Other side effects include hot flashes, night sweats, and vaginal dryness.

After hearing this, you probably wonder who in their right mind would use danazol. Although most women will experience at least some of these side effects, only about 10% find them sufficiently disturbing to discontinue the medication. The usual length of treatment is six months.

Oral Contraceptives  The birth control pills have been used to treat endometriosis for decades, although they are less effective than GnRH agonists or danazol. Endometrial implants are less active during use of birth control pills, particularly when the pills are taken continuously without a break for menstruation.

Progesterone  Progesterone alone, without estrogen, can also be used to treat endometriosis. The most common progesterone used for this purpose has been medroxyprogesterone (Provera), administered either orally or injected in the form of Depo-Provera. Like birth control pills, progesterone stops menstruation and renders the endometrial implants inactive. Overall, progesterone use has fewer side effects than taking combination birth control pills, although erratic bleeding is more common. Weight gain and mood change are also somewhat more likely to occur with Provera than with birth control pills. Because it delays ovulation, Depo-Provera is not recommended for women who have fertility problems. Other progestins have also been used for the treatment of endometriosis including "natural" progesterone (Prometrium). Prometrium is not as potent as the synthetic progestins so when it is used to treat endometriosis, it must be used in doses that are higher than those used in hormone replacement therapy. Natural progesterone creams are not absorbed into the bloodstream in sufficient quantities to impact endometriosis.  A progesterone releasing IUD, Mirena, has also shown efficacy in the treatment of endometriosis.

Aromatase Inhibitors  Aromatase inhibitors (AI’s), drugs more commonly used to decrease estrogen production in breast cancer patients, have been used in refractory cases of endometriosis and have been shown to provide relief in 90% of patients. Unfortunately, the pain usually returns immediately after cessation of therapy.  AI’s also increase ovarian cyst production in premenopausal women. Combining an oral contraceptive or progestin with AI treatment can reduce the likelihood of cyst formation.

Mefipristone (RU-486) Mefipristone is an anti-progestin agent more commonly used in pregnancy termination. However by inhibiting ovulation and disrupting endometrial integrity it has been shown to reduce pelvic pain in patients with endometriosis (considered experimental at this time).

Pentoxifylline  Pentoxifylline is another experimental drug that theoretically might provide benefit to endometriosis patients. It decreases the production of inflammatory factors called cytokines and inhibits the activation of immune cells. Therefore it would seem to have the potential for decreasing pain from endometriosis and improving fertility. Randomized trials have shown a trend towards improving pregnancy rates and a trend towards decreasing pain scores, but the results do not achieve statistical significance. More studies are needed to address immune-modulators, such as pentoxifylline, before they can be recommended in the treatment of endometriosis.

Complementary and Alternative (CAM) Approaches  One theory of endometriosis proposes that it is an auto-immune condition. If the immune system is compromised with a food intolerance, then theoretically removing that food can have an effect on the disease. Various dietary recommendations have been made including the elimination of wheat (gluten), sugar, meat, and dairy. In this theory, decreasing foods that are high in hormones and inflammatory fats (ex. red meats) while increasing fruits and vegetables would be helpful. However, there are no scientific studies to support this approach. In one case-controlled study, diets high in fat and low in fruit were actually associated with a lower risk of endometriosis, contradicting the common sense approach mentioned above. Supplementation with omega-3 fatty acids, and antioxidant vitamins such as A, C, and E has also been recommended. At least two reasonable studies suggest that Chinese herbal medicine can be effective at reducing the pain from endometriosis. In one study it was found to work more effectively than danazol (see above) and in another it was as effective as gestrinone, an anti-progestin used outside of the United States to treat endometriosis. Chinese herbal medicine is often combined with acupuncture in the treatment of endometriosis. Vaginal childbirth appears to decrease the recurrence of endometriosis compared to women who have not given birth, or women who have delivered by cesarean section.

After hearing the options, Joan agrees with Dr. Seaver that laparoscopy is indicated. During the laparoscopy Dr. Seaver sees multiple endometrial implants, but little in the way of adhesions. He uses a laser to vaporize the visible endometrial implants at the time of laparoscopy. After the surgery, he gives Joan Depo-Provera injections every three months for continuous suppression of further endometriosis and contraception. With regular administration of the Depo-Provera, Joan no longer has menstrual periods and remains pain-free.


If I have endometriosis, does that mean I can't get pregnant?

After graduation Joan marries her college sweetheart, Bubba (I know. Really?  But it’s better than his real name, Bartholomew. What were his parents thinking?). Joan wants to start a family right away so she stops her Depo-Provera. After approximately 4 to 5 months her menstrual cycle resumes, but one year later she is still not pregnant. She begins to wonder if this is related to the endometriosis.

There is an increased chance of infertility with endometriosis. Adhesions (scar tissue) formed from endometriosis may obstruct the fallopian tube or encase the ovaries, thereby preventing the egg from reaching the tube. Tubal scarring can hinder the eggs movement down the tube, preventing it from reaching the uterus. Even when no adhesions are present, infertility may occur. The mechanism that causes infertility when no adhesions exist is not clearly understood. In some women with mild endometriosis, the levels of certain chemicals called cytokines (released in response to inflammation) are increased in the abdominal cavity, and these hormone-like proteins may have a negative effect on reproductive processes.

You can find solace in knowing that most women with endometriosis and infertility will succeed in conceiving after treatment. The method of treatment depends on the severity of endometriosis.  The American Society for Reproductive Medicine has developed a classification system based on the extent of the problem, the size of the endometrial implants, and the severity of adhesions. Approximately 75% of patients with mild endometriosis and 60% of those with moderate disease conceive after treatment. Patients with severe disease have a significantly lower pregnancy rate. If all else fails, in vitro fertilization may still provide an opportunity for a successful pregnancy (see chapter 6)

Dr. Seaver reassures Joan, reminding her that it may take a year or two for women to get pregnant even if they do not have a problem such as endometriosis. If she were in her mid-30s, he might refer her to an infertility specialist, but she is only 25, so he encourages her to be patient. Six months later she is pregnant with a little boy, Bubba Jr. (Don't blame us, we didn't name the child).


Will endometriosis come back?

Unfortunately, endometriosis often reappears, even after treatment. This is extremely disconcerting after you have undergone extensive treatment to eradicate it. Symptoms may recur within months of treatment or a number of years later. Persistence is the name of the game. If one method of treatment is unsuccessful, another should be tried. You might consider consulting an infertility specialist if the endometriosis recurs, since he or she will usually have greater expertise in dealing with this disorder. If you suspect that you have endometriosis, your best bet is to start your family sooner, rather than later. If infertility has been a problem, the best window of opportunity for successful conception immediately follows treatment. Chronic pelvic pain is often associated with recurrent disease, and working with a physician who specializes in pain control can be beneficial, if one is available in your area.

Dealing with a recurrent or chronic disease is demoralizing. Seek emotional support through psychological consultation or support groups. Contact the national headquarters of the Endometriosis Association to find a support group in your area: www.endometriosisassn.org


My doctor said I'll eventually need a hysterectomy because of my endometriosis. Is that necessary?

If your primary problem is pelvic pain and childbearing is not an issue, the doctor may recommend removal of the uterus, fallopian tubes, and ovaries. Obviously, this is a very aggressive step. It is based on the rationale that endometriosis is least likely to recur if the reproductive organs are removed. Other options include conservative surgery or drug treatment. However, if you have severe symptoms that have not responded well to treatment, this more aggressive approach may be appropriate.


What happens to endometriosis after menopause?

Yeah! We finally get to say something reassuring about this disorder. Endometriosis regresses with menopause. Menopause occurs when the ovaries stop producing estrogen. Since the endometrial implants depend on estrogen, the condition improves after menopause. However, adhesions produced by the disease will not disappear. Severe pain from the scar tissue requires surgery. If the adhesions are particularly extensive, removal of the uterus, fallopian tubes, and ovaries is a reasonable solution to the problem.

However, as you enter menopause, bear in mind that hormone replacement therapy must be undertaken carefully if you have a history of endometriosis. Progesterone must be given to counteract the estrogen. Cyclical regimens (those that create periodic menstrual flow) should be avoided.


For more help with endometriosis:

The Endometriosis Association: www.endometriosisassn.org


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