Endometriosis takes its biggest toll during a woman’s reproductive years, sometimes causing pain during her teens.
Menstruation and Fertility
Endometriosis can cause extremely painful menstrual periods, and according to surveys by the Endometriosis Association, more than 40 percent of women with endometriosis report fertility problems. Surgery to remove adhesions or blockages that interfere with the release and uptake of an egg can improve fertility. But some women aren’t helped by surgery, and turn to in-vitro fertilization. However, hormones needed for these procedures may stimulate endometrial implants, so experts urge women to proceed cautiously.
Women with endometriosis also have a high rate of tubal (ectopic) pregnancies and an increased risk of miscarriage. Some studies suggest that autoantibodies may interfere with the implantation of the fetus. One study presented at the 2002 World Congress on Endometriosis found that a combination of low-dose aspirin and prednisone improved pregnancy and implantation rates in women undergoing in-vitro fertilization who were found to have autoantibodies.
Menopause and Beyond
For some women, pregnancy brings temporary relief from endometriosis, and menopause usually ends symptoms in women who have moderate disease. Estrogen replacement therapy (ERT) can occasionally reactivate endometriosis (even in women who have had a hysterectomy).
The course of endometriosis in later life has not been well-studied. But studies suggest that women with endometriosis have an increased risk of ovarian and breast cancer, as well as melanoma.
Interstitial cystitis (IC) is another chronic condition scientists suspect may have an autoimmune component. IC is a chronic bladder disorder that causes nerve endings to be irritated by elements in urine, resulting in bladder pain on filling, so it holds less urine. The cause is not known. It was once thought to be inflammatory, but bladder biopsies show very little inflammation.
One theory is that the cells lining the bladder are somehow “leaky” in women with IC, allowing substances in urine to penetrate the bladder wall, irritating muscle tissue and nerve endings, resulting in symptoms of urinary urgency and pain.
Other research suggests IC may be an autoimmune problem, with autoantibodies attacking bladder tissue. Around 25 percent of women with IC are found to have increased levels of antinuclear antibodies (ANAs). Autoantibodies to mitochondria, the energy-generating components of cells, found in women with scleroderma, have also been found in around 2.5 percent of IC patients. It’s not known exactly what role autoantibodies may play. Women found to have these antibodies may have a separate form of the disease.
Mast cells, which play a role in allergies and in inflammation, have turned up in bladder biopsies of some women with IC, and 40 percent of IC patients also have allergies. There’s also a connection with chronic pain disorders. A study by Temple University found that 25 percent of women with IC have irritable bowel syndrome, almost 20 percent have migraines, 13 percent had endometriosis, and 10 percent had vulvodynia. The Temple study found that other IC patients have been diagnosed with (or have occasional symptoms of) fibromyalgia, ulcerative colitis, chronic fatigue, lupus, and asthma. Experts say there are probably multiple causes for IC, which affects as many as 500,000 women.
The most common symptom is an urgent need to urinate, sometimes as many as sixty times over a twenty-four-hour period. Women also experience a burning or cramping pain before and after urinating. Over half of women with IC have pain during or after intercourse, possibly due to spasms in pelvic muscles caused by irritation. IC is diagnosed by cystoscopy. The procedure is done under general anesthesia: the bladder is filled with water (distended) and drained, and then a flexible, lighted fiber-optic scope is inserted into the urethra to examine the lining of the bladder to look for tiny hemorrhages, ulcers (Hunner’s ulcers), or cracks in the mucosa. The distention of the bladder with water (hydrodistention) may have therapeutic effects.
Treatments include the drug dimethyl sulfoxide (DMSO), infused into the bladder by a catheter weekly (or every other week) for four to six weeks. A newer drug, pentosan polysulfate sodium (Elmiron), is given orally. It seems to help coat the bladder lining, protecting it from irritants. Other treatments include the tricyclic antidepressant amitriptyline (Elavil), which lessens nerve pain and seems to increase bladder capacity, and the antihistamine hydroxyzine (Atarax). Since both can cause drowsiness, they’re usually taken at bedtime.
Dietary changes—avoiding bladder irritants like alcohol, citrus fruits and juices, spicy foods, coffee, vinegar, and high-oxalate foods like spinach and rhubarb—may help some women.
There are no cures for interstitial cystitis. But, as with other chronic pain syndromes, women are urged to learn stress management techniques to help cope with the disorder.