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