A Woman's Guide to a Healthy Stomach

The symptoms of endometriosis tend to mimic other issues. Women usually have different symptoms and may seek attention from a primary care physician, gastroenterologist or gynecologist. Abdominal or pelvic pain is a very common complaint. However, change in the bowels may also be a complaint. Endometriosis is not often the first thought for the internist or gastroenterologist.

Unfortunately, most doctors know very little about endometriosis. After all, isn’t pain the norm with the menstrual period? Suspicion of the diagnosis is really what’s needed to make a diagnosis. For more than forty-three hundred women reporting surgically diagnosed endometriosis who responded to a survey by the Endometriosis Association, the average time from the onset of symptoms until a woman sought medical attention was over four and a half years, and it took almost five years on average before the diagnosis was made. When symptoms started in adolescence, it took even longer before the correct diagnosis was made. And along the way, almost two-thirds of these women were told by one physician that nothing was wrong with them. Remarkably, 18 percent of women saw between five and nine physicians, and 5 percent saw ten or more physicians before endometriosis was diagnosed. Almost all of these women had pelvic pain and menstrual pain, and two-thirds experienced pain at ovulation.

Women often are totally accepting of having pain every month. But when is the pain not the norm?

Marci is a thirty-one-year-old lawyer who was referred to me for abdominal pain. For three months she had had an intermittent “pulling” pain deep in the pelvis, which seemed to come out of nowhere. This pain had grown more frequent, but she tried to ignore it—she had a frantic schedule, worked late all the time and just didn’t have time to deal with it. She was also constipated, with very infrequent pellet-shaped stools. She chalked this up to not eating regularly, scarfing down lunch at her desk and sometimes skipping dinner or doing takeout. Her most recent menstrual period, she told me, was more painful than normal. Her pelvic pain also had begun to shift to the left side of her abdomen. She’d been sent by her gynecologist for a pelvic ultrasound and vaginal ultrasound, where a probe was inserted into her vagina. The probe in the vagina reproduced the pain. A small cyst found on her right ovary—a common finding in a young woman, often due to follicle formation—was the only finding.

Her days followed a specific routine, centered around pain: Every morning she would wake up hoping that this would somehow be the day that she’d miraculously be pain free. But her relief would be short-lived. After an hour, once she was up and about, the pain would start and get progressively worse as the day wore on. The pain radiated down her left thigh and occasionally shot down her left leg, though her back was pain free. She even dreaded lying down to sleep, because she knew she’d only lie awake in pain. Her only other complaint was tiredness. But then again, who wouldn’t be tired given her lifestyle and lack of sleep? It was easy for her to make excuses.

Marci had suffered from colitis (an inflammation of the colon) five years ago, during law school, but a colonoscopy revealed that her colon had healed. She’d had a bout of appendicitis fifteen months ago, she told me, and her appendix was removed, which alleviated the sudden abdominal pain symptoms that she had at that time.

I reviewed her family history, and it was revealing: Her mother had endometriosis, and her mother’s aunt had endometriosis. A positive family history for endometriosis, especially in her mother, made me suspect that Marci had inherited it as well. (In fact, heredity plays a part in 18 percent of cases.) Plus, Marci was an only child, which made me think her mother had had a hard time getting pregnant due to her condition.

When Marci came to me, she was very distressed about her previous physician interactions.

“My gynecologist told me that I must be under stress since my affect was ‘flat,’” Marci said. “I told her that I was in quite a bit of pain and that it was definitely affecting my mood. She spent an hour asking me about the stress in my life, and then she told me I should go to a mind/body clinic! She said nothing was wrong with me.” Marci’s gynecologist brushed off her fears when Marci told her how hard it was for her to insert a tampon because of pain; her gynecologist also failed to biopsy her ovarian cyst. Clearly, by the time Marci reached my office, she was very frustrated—not to mention physically miserable.

My examination revealed only tenderness below the navel and on the left side of her belly. I examined her colon again by colonoscopy, and while I could see traces of her previous colitis, nothing could explain the pain that radiated down her leg. I also ordered an MRI for her spine, which was normal, and a pelvic MRI scan.

Once I got those results, I felt like we were getting somewhere: The pelvic MRI was abnormal, showing a small amount of free fluid in the pelvis and an area that suggested that there might be unexplained nodules. Her colon took some unusual sharp turns, which suggested that the colon could be stuck to adhesions (scar tissue). Adhesions are caused after surgery from inflammation (such as diverticulitis, “pouching” in the colon) or from the bleeding of the lesions of endometriosis. Taken together, my findings suggested the possibility of endometriosis.

The only way to be sure was to look in that area. This was done by a laparoscopy. (See above for a description of this procedure.) There it was—endometriosis with scar tissue, with involvement in her colon. Her lesions were cauterized (burned off), and she was started on Lupron (leuprolide) to reduce her estrogen levels.

Marci developed hot flashes due to a lack of estrogen. This was actually a good sign, as it meant there wasn’t enough estrogen to stimulate the endometriosis to grow back. (Menopausal women experience this all the time.)

However, estrogen can be protective, especially against osteoporosis (loss of calcium in the bones, which makes them brittle). Marci’s doctor thought that a low dose of estrogen could prevent osteoporosis without making her endometriosis rear its head yet again, as had been shown in studies. Therefore, her gynecologist prescribed an oral contraceptive pill. Unfortunately, within a week of starting the oral contraceptive, Marci began to suffer uterine bleeding. This was unexpected—Lupron should have stopped her periods entirely. (Marci’s treatment isn’t as strange as it might seem. Despite the fact that she did not have a period, her fertility wouldn’t be permanently affected; once she stopped Lupron, her proper menstrual cycle and, hence, her fertility would return.) Even though this bleeding was clearly out of the ordinary, Marci assumed all was well, and she continued on her treatment. (Think this is weird? It isn’t. I’ve had patients come to me after having ignored bleeding for years. Don’t make this mistake!)

After three months of treatment, the bleeding became constant, so heavy that Marci went through a tampon every hour. For two weeks she went through a box of tampons every day. Her pain also became progressively severe. It was impossible to ignore any longer. On the advice of her gynecologist, she stopped the oral contraceptive pill. The bleeding stopped within twenty-four hours. The pain lessened after a few weeks but then returned, shooting down her left leg. Ibuprofen didn’t help. The endometriosis was clearly back.

Now, five months after her first laparoscopy, an MRI scan showed a new lesion between her rectum and her spine on the left side. After she endured two months of exhaustion and increasing pain traveling down both legs, despite the Lupron, more laparoscopic surgery was considered.

She underwent another laparoscopy ten months after the first one, performed by a new gynecologist. Now she had endometriosis on the right ovary and additional endometriosis in her pelvis. Further evaluation showed new lesions in front of the spine and also between the rectum and bladder, which would certainly affect her bowels. She was told by the operating gynecologist that nothing else could be done for her—short of a hysterectomy with removal of the ovaries. At thirty-one, still hoping to start a family, she refused to accept this outcome.

At this point, it had been a year since she’d begun her journey. I had kept in touch with her via phone during her long saga. She now returned to my office for a GI follow-up. She told me her bowel movements were coming only once every three to four days, pelletlike and incomplete. Because constipation can accompany endometriosis, and especially given her new lesions, I thought the endometriosis was likely one reason why her stools were so odd. For the constipation, I recommended that she take Benefiber pills (guar) and add flaxseed (whole or ground), one to two tablespoons of each per day. I also started her on lactobacillus tablets. (A study in rhesus monkeys, which I talk about below, suggests that those with endometriosis had fewer lactobacilli. The benefits of lactobacillus supplements aren’t definitively known for humans.)

Most troubling, though, was the pain that resulted from her deep endometriosis. She couldn’t have intercourse or easily insert a tampon. I switched her to sulindac, a nonsteroidal drug, which I thought would work better than the ibuprofen.

Marci didn’t like the sulindac, because it made her dizzy, and so she returned to ibuprofen for pain, sometimes taking up to eleven tablets every day. The ibuprofen made her more constipated, though it did somewhat address her pain. When she decreased the amount of ibuprofen at my strong suggestion, her constipation improved. She decreased the ibuprofen and put up with her pain.

Over the next eight months, Marci continued to have constant pain in her pelvis, although she was able to make it through her busy day, through a delicate dance of medication management. The pain caused exhaustion; she told me she’d crawl into bed at the end of a long day, praying for a pain-free night’s sleep.

In spite of two surgeries, medical therapy and opinions from several surgeons, she continued to suffer. She had a choice: should she undergo hysterectomy, with the removal of the ovaries, which would likely take away all her symptoms? This is a difficult choice for a young woman, of course. Interestingly, if she did get pregnant in the future, the endometriosis would likely regress during pregnancy, though we don’t know why. (Getting pregnant in the first place, however, might be difficult without IVF [in vitro fertilization].)

Before resorting to hysterectomy, she was seen by another gynecologist, who found tenderness on the pelvic exam consistent with endometriosis. He referred her to a gynecological-oncological surgeon, who was very experienced in complicated surgeries as he specialized in cancer in the female organs. The best time to operate was thought to be when Marci was bleeding during her period, since the endometriosis lesions could be more easily identified as they would be active. Therefore, she stopped further doses of the Lupron and surgery was scheduled when her estrogen levels were at their peak, meaning the endometriosis would be at its most visible.

The surgery was a success. The visible endometriosis lesions were cauterized (ablated) or removed, and the scar tissue was cut (lysed). Now on continuous birth control pills, Marci has been almost pain free for over one year.

How is endometriosis treated?

The goal of the treatment is to reduce pain, improve the chances for pregnancy and reduce any associated side effects from the endometriosis. Estrogen is a major factor in stimulating the endometriosis to grow. Therefore, treatment is aimed at interfering with estrogen stimulation.

Endometriosis can be treated medically and surgically. Your doctor should discuss the treatments with you in detail, as every treatment has possible side effects. Here’s what he or she might suggest:

1 Oral contraceptive pills (cyclical or continuous).

2 Androgens: These are male hormones, like testosterone, which is the opposite of estrogen. A medication like Danazol increases testosterone and lowers estrogen. Beware—androgens can cause weight gain and masculinizing effects, like hair on your upper lip.

3 Gonadotropin-releasing hormones: These prevent the stimulation of the ovaries by your innate (natural) hormones and produce a low-estrogen environment. Lupron, leuprolide acetate, (given to Marci) is one such medication.

4 Progestins: Progestins stimulate progesterone receptors, helping to prevent ovulation and to lessen menstrual bleeding.

Are the symptoms the same for everyone?

The course of endometriosis varies from person to person. Marci’s odyssey was severe. In fact, one-quarter of women don’t have symptoms and might not even suspect a problem until they try to get pregnant and have trouble. Of those women with symptoms, pain can be mild or intense, like Marci’s. The pain can be cyclical, occurring in relation to the menstrual cycle (often before your period), or it can be constant.

In up to one-third of women, the intestinal tract (usually the surface of the small and large intestines) houses these rogue cells. When endometriosis involves the colon or the small intestine, 40 percent of women experience constipation; 33 percent, diarrhea; and 5 percent, both diarrhea and constipation. Rectal pain during a bowel movement can be severe, and bleeding from the rectum can occur. It’s little wonder that the diagnosis of irritable bowel syndrome is so often made in women who actually have endometriosis. A woman might even mistakenly be given the diagnosis of ulcerative colitis or Crohn’s disease when she has bleeding from her rectum due to endometriosis.

Where does this pain come from?

The pain brought on by endometriosis is due to a variety of causes.

1 Irritation of the nerves occurs. When the endometriosis grows, it acquires a nerve supply and irritation of the nerves can cause pain.

2 Blood is an irritant. When the endometrial tissue bleeds due to hormonal stimulation, the blood can cause all sorts of inflammatory cells to migrate into the affected area.

3 Inflammatory cells release compounds that can cause pain. These substances stimulate nerves or cause pain directly by inducing inflammation, just like when you get a bad cut that develops inflammation around it. There are medications that act directly against the formation of these substances. These include aspirin, ibuprofen (Motrin), naproxen (Naprosyn) and sulindac (Clinoril). We use them to prevent menstrual cramps and for other aches and pains.

Do women with endometriosis tend to get other illnesses more often than women without endometriosis?

According to a survey conducted in 1997 by the Endometriosis Association, many conditions are found to occur more frequently in women with endometriosis. The most common coexisting conditions are allergies and asthma. Women with endometriosis also have a high prevalence of hypothyroidism, fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, systemic lupus erythematosus, Sjögren’s syndrome (dry eyes and mouth) and multiple sclerosis.

Is there a diet that I can follow that can help the endometriosis?

Maybe. The data suggest that diets may help, but there are few good studies. Here’s what I know.

In Japan a study showed that women who ate dietary soy isoflavones, which come from soybeans (tofu, for example), had fewer cases of advanced endometriosis, but the consumption of soy isoflavones did not affect the risk for early endometriosis. Soy isoflavones have estrogen-like activity but also can have weak antiestrogen properties. In this case, it was speculated that the antiestrogen properties decreased the risk for advanced endometriosis. Fish oil decreases the size of the endometriosis lesions in animals but hasn’t been shown to decrease the risk for endometriosis or the size of endometriosis lesions in women.

Do probiotics help?

I wish I could tell you definitively, but I can’t. The only evidence that suggests they might help is that the types of bacteria in the guts of monkeys with endometriosis are different from those in healthy monkeys. In monkeys with endometriosis, there are fewer lactobacilli. Whether or not endometriosis can be improved by taking probiotics containing lactobacilli just isn’t known.

Are there any alternative treatments that work for endometriosis?

As any woman with severe endometriosis will tell you, it’s worth trying anything! But there aren’t any solid trials evaluating alternative treatments. In a self-report of 1,160 women responding to an Endometriosis Association survey, many different treatments were highlighted, including whole medical systems and energy medicine (including acupuncture, traditional Chinese medicine, candidiasis treatment, homeopathy and naturopathy, ayerveda reiki), mind-body medicine, biologically based therapies (including ingestion of dietary supplements, diet-based treatment and ingestion of herbs), and manipulative and body-based therapies (including exercise, chiropractic manipulation and massage therapy).

Biologically based therapies (use of substances found in nature) (52 percent) and manipulative and body-based therapies (based on manipulation and movement of one or more parts of the body) (41 percent) were commonly used. The self-reported improvements were 74 percent for therapy with mind-body medicine (techniques to enhance the mind’s capacity to affect bodily function and symptoms) and 53–66 percent for therapy with many of the whole medical systems (complete systems of theory and practice), energy medicine (use of energy fields) and biologically based therapies. The manipulative and body-based therapies overall were reported to be less helpful, with 35 percent of women reporting improvement. However, without good studies, I can’t recommend the alternative therapies just yet.

I have endometriosis. Do I have to worry about getting cancer, too?

If you have symptoms that are unusual or bothersome, certainly get them checked out. You should also have the routine recommended screening tests for cancers, such as PAP smears, mammograms and colonoscopies. There are some differences in cancer rates for women who have had endometriosis. In a very large study from Sweden that looked at the rate of diagnosis of cancer after a hospitalization for endometriosis, the overall rate of cancer was not increased. However, some tumors were slightly more common, and one—cervical cancer—was less common. The cancers that had about a 25–37 percent increase in incidence were ovarian, endocrine, thyroid, brain and kidney cancer, and malignant melanoma. Colorectal cancer was not examined but may be slightly more prevalent. Breast cancer was barely increased, possibly due to the fact that we screen so vigilantly these days.

Lately I’ve been needing to pee—constantly. Judging by my sex life, I’m sure I’m not pregnant. My mother wants me to get tested for ovarian cancer, just in case. I had no idea constant urination was even a symptom! Could I have it?

Probably not. Frequent urination is more often a symptom of other problems. It could be a symptom of a urinary tract infection or diabetes mellitus, or it might be associated with irritable bowel syndrome or interstitial cystitis. Burning with urination also occurs in almost half of all women with endometriosis. It’s important to make sure that you don’t have an infection by getting a culture of your urine and to make sure you don’t have diabetes mellitus by having the sugar checked in your urine or blood. In the United States, females have a 1.4 percent lifetime chance of developing ovarian cancer. More than half of the deaths from ovarian cancer occur in women between the ages of fifty-five and seventy-four years. Still, it’s important to be aware of the symptoms. If something feels unusual for your body, please tell your doctor! Many symptoms overlap with gastrointestinal issues. See your doctor if the following symptoms are constant or worsening:

 Bloating throughout the day, especially requiring a larger waist size on your pants

 Pelvic or abdominal pain

 Difficulty eating, feeling full quickly or weight loss

 Urinary symptoms (urgency or frequency)

 Frequent pain with intercourse

If I decide to get tested for ovarian cancer, what’s going to happen?

It’s important to remember that we want to rule out the zebras—or more unusual diagnoses—in the hopes of finding what we call horses, or more common ailments. Here’s what you can expect.

Pelvic exam: Your doctor will feel your cervix, uterus and ovaries. She may do a Pap smear, which evaluates for cervical and uterine cancers or changes in their cells, but not for ovarian cancer.

Pelvic ultrasound: This will take a “picture” of your ovaries and analyze what might account for that full, bloated feeling. It does not involve any radiation, just sound waves. Usually part of the test involves putting an ultrasound probe in the vagina, which may show the ovaries better. If there are growths, the ultrasound can’t always determine if these growths are likely to be cancer.

CT scan: This test uses X-rays to examine part of the body. It allows smaller problems to be detected. It visualizes the ovaries and uterus, as well as the bowel, lymph nodes and the spaces around them. A CT scan for ovarian cancer often includes an examination of the abdomen, as well as the pelvis. In that case, oral contrast is given to you to drink so that the bowel will stand out from the surrounding area. When the abdomen is examined, the liver, kidneys, spleen and pancreas are also seen. Often the radiologist doing the test will want to better visualize the blood vessels. This is done by an injection of dye into your arm. The dye contains iodine. So if you are allergic to iodine-containing substances, be sure and tell the doctor, as you will likely be allergic to the dye. Also, if you have any problems with kidney function, be sure to tell the doctor, as he or she might not want to do this part of the test.

MRI scan: This scan uses a magnetic field instead of X-rays to view the internal organs. It sees soft tissues very well. The best test is done with an enclosed scanner, where you’ll hear a lot of banging. (If you’re claustrophobic, speak up.) An injection of gadolinium (an element used as a contrast agent in MRI scans) is often done to see the blood vessels. Your kidney function should be confirmed as normal before you are given gadolinium, particularly if you have any problems that could affect the kidneys, like high blood pressure, diabetes mellitus, lupus, dehydration or kidney diseases.

Blood tests: A blood count (CBC) looking for anemia and liver function tests are commonly done. In fact, there is a blood test (CA-125) that had been touted to diagnose ovarian cancer. Unfortunately it is not a good screening test and has not been recommended as a routine screen in most people. CA-125 can be falsely high in someone who does not have ovarian cancer and falsely low in someone who does have ovarian cancer. On the other hand, CA-125 is often used to detect early recurrence of cancer in someone who had a high CA-125 with the original cancer and has had her ovarian cancer treated.

Laparoscopy: This is an even more precise test, in which a thin viewing tube (called a laparoscope) is placed through a small cut made in the abdomen. Using the scope as a guide, the surgeon takes a sample of fluid and tissue from the growth. These samples are then tested for cancer.

Every month around my period, I get bloated, I cramp and I have horrible diarrhea. I don’t mean to be a big baby, but how can I deal with it without letting it ruin my life?

Well, first remember that you’re not alone: about 85 percent of women suffer from some form of PMS each month, whether or not they have endometriosis. PMS, as defined by the American Congress of Obstetricians and Gynecologists, is “the cyclic occurrence of symptoms that are sufficiently severe to interfere with some aspects of life, and that appear with consistent and predictable relationship to the menses [menstrual period].” Only about 3 to 8 percent of women have severe symptoms. PMS symptoms may include upset stomach, bloating, constipation or diarrhea, appetite changes, mood disturbances, joint pain, headache and acne.