Our Bodies, Ourselves (138 page)

PBS/IC may be incorrectly diagnosed as urethral syndrome or trigonitis, or you may be told there's nothing wrong and that you have a “sensitive bladder.” A complete battery of urologic tests typically produces negative results. Conditions that have similar symptoms include bladder infections, kidney problems, vaginal infections, endometriosis, and sexually transmitted infections (STIs).

There is no consistently effective treatment or cure for PBS/IC. However, the most commonly recommended approaches are:

• Medication
, including nonsteroidal anti-inflammatory drugs, antispasmodics, and antihistamines. Pentosan polysulfate sodium (Elmiron), an oral medication, may protect the bladder from irritants in the urine.

• Low-dose antidepressants
, which appear to have antipain properties

• Diet changes
, eliminating caffeinated beverages, alcohol, artificial sweeteners, spicy foods, citrus fruits, and tomatoes

• Transcutaneous electrical nerve stimulation (TENS)
to block pain, using a small portable unit worn on the body

The following approaches all involve surgery, the benefits of which are sometimes unproved, and all of which pose significant risks:

• Bladder distention (hydrodistention)
stretches the bladder by filling it with water while you are under regional or general anesthesia.

• Dimethyl sulfoxide (DMSO, Rimso-50)
, an anti-inflammatory medication, is placed directly into the bladder.

• Oxychlorosene sodium (Clorpactin)
is placed directly into the bladder; regional or general anesthesia may be necessary for this.

• Major surgery
(partial or complete removal of the bladder, or of certain nerves leading to the bladder) is often followed by severe complications and should be done only as a last resort.

Developing effective IC therapies is a major challenge facing all researchers in this field. The American Urological Association is planning to publish the first guidelines regarding methodology for diagnosis and treatment during 2011. In 2010, a large multicenter NIH-funded study reported on findings that myofascial physical therapy (specialized stretching of the thin tissue that covers all the organs of the body) was shown to be effective when compared with conventional massage techniques.
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Obstetric fistula is a childbirth injury that typically affects girls and women living in acute poverty throughout Africa and South Asia. Fistula is caused by prolonged and obstructed labor when the constant pressure of the baby's head against the soft tissues of the vagina creates a hole between the bladder and the vagina, and sometimes between the rectum and the vagina. This leaves girls and women leaking urine and/or feces continuously from the vagina. It may also cause serious nerve damage to the legs, making it difficult or impossible to walk. Girls and women with fistula are often isolated and highly stigmatized. In most cases, the cost of an operation and the distance to a medical facility providing fistula services make surgical repair impossible. Fistula is entirely preventable, and it rarely or never occurs in the developed world. Women with this condition who immigrate to the United States or Canada may encounter health care providers who have never seen it before. For more information, see “Obstetric Fistula” at ourbodiesourselves.org.

Female genital cutting (FGC)—also called female genital mutilation or female circumcision—is a traditional cultural practice in some African countries as well as in several countries in Asia and the Middle East. It involves cutting parts of the external genitals of girls or young women as a rite of passage into womanhood and to curb sexuality. FGC may consist of removing the hood of the clitoris, part or all of the clitoris and/or labia minora (inner lips), and, in some cultures, part or all of the external genitalia. The vaginal opening may also be narrowed or stitched (infibulation). Pricking, piercing, burning, scraping, slashing, and corroding the female genitals are also considered to be FGC by the World Health Organization (WHO). As a result of an influx of refugees and immigrants, thousands of women in the United States are living with the results of these practices.

Short-term health complications of FGC include excessive bleeding, infection, and shock, mostly due to unsanitary conditions, failed procedures by inexperienced circumcisers, or inadequate medical services once a problem occurs. Long-term health complications are abscess formation, scar neuromas, dermoid cysts, keloids, recurrent urinary tract infections, painful sexual intercourse, and vulval adhesions that block the vagina. In women who are infibulated, obstruction of the urethra and vagina by scar tissue may result in urine retention and urethral and bladder stones, irregular or prolonged menstrual flow, chronic urinary tract infections, and chronic pelvic infection, which often leads to scarring of the fallopian tubes and infertility. Sexual and psychological issues are likely to emerge over time. In 2006, a major World Health Organization study provided strong evidence that FGC increases the risk of complications during childbirth and can lead to one to two additional perinatal deaths per one hundred births. For more information, see
“Female Genital Cutting,”

Many circumcised women seek treatment for problems or issues related to FGC but may not always acknowledge or understand the connection. It is critical for health care providers to be sensitive to women in both discussing this issue and treating its negative consequences.

Pelvic relaxation is a condition in which the muscles of the pelvic floor become slack and no longer support the pelvic organs properly. In
severe cases, the ligaments and tissues that hold the uterus in place may weaken enough to allow the uterus to fall (prolapse) into the vagina. Women sometimes experience pelvic relaxation and/or uterine prolapse after one or more very difficult births, but the tendency can also be inherited. Uterine prolapse is often accompanied by a falling of the bladder (a condition known as cystocele) and rectum (rectocele).

The first sign of pelvic relaxation is often a tendency to leak urine when you cough, sneeze, or laugh suddenly. If your uterus has fallen into the vagina, you may have a dull, heavy sensation in your vagina or feel as if something is falling out. You may have constipation, difficulty accomplishing a bowel movement, or an inability to control your bowels. These symptoms are usually worse after you have been standing for a long time.

Medical intervention is usually not necessary for pelvic relaxation or even mild uterine prolapse. If the prolapse is severe enough to cause discomfort, you can ask your doctor to insert a pessary—a rubber device that fits around the cervix and helps to prop up the uterus. Disadvantages include difficulty in obtaining a proper fit, possible irritation or infection, and the need to remove and clean the pessary frequently. A surgical procedure called a suspension operation can lift and reattach a descended uterus, and often a fallen bladder or rectum as well. Many medical practitioners recommend hysterectomy for prolapsed uterus, but it is usually unncessary and should be done only as a last resort in appropriate cases. It's best to consult a surgeon who has expertise in this area and keeps up with new research. Urologists have special training in this kind of pelvic surgery.

The best way to prevent pelvic relaxation and uterine prolapse is to do regular Kegel exercises and leg lifts, which strengthen the muscles of the pelvic floor and lower abdomen (see
“How to Do Kegel Exercises”
). Check whether your pelvic muscles are in good shape by trying to start and stop the flow of urine while sitting on the toilet. If you can't stop the flow, you need to do more Kegels. Some health care providers recommend doing them up to a hundred times a day, especially during pregnancy, when the pelvic muscles are under particular stress. You may also strengthen a slightly prolapsed uterus by relaxing in the knee-chest position (kneeling with your chest on the floor and your bottom in the air) several times a day. Some women find that certain yoga positions, such as the shoulder stand and headstand, relieve the discomfort of a prolapsed uterus.

Polycystic ovary syndrome (also called anovulatory androgen excess, polycystic ovarian disease, or Stein-Leventhal syndrome) is the most common hormonal and reproductive problem that affects women of childbearing age. It is a medical condition that may include a variety of ailments, making it difficult to diagnose. PCOS usually starts around the time of puberty but may become noticeable when a woman is in her twenties or thirties. Between approximately 5 and 8 percent of women experience this disorder.

PCOS is defined by the presence of any two of the following characteristics:

• Irregular menstrual cycles or lack of ovulation (release of an egg) for an extended period of time

• Elevated levels of androgens (male hormones) in the blood, or evidence for elevated
androgens such as acne or excess unwanted hair growth (and head hair loss)

• Many small follicles (benign fluid-filled sacs) on the ovaries (resulting from not releasing eggs)

PCOS is diagnosed in large part by excluding other possible conditions that can cause similar signs and symptoms. Your health care provider will first administer blood tests or other exams to see if your body is making high doses of steroids, or if there are pituitary, adrenal, or ovarian tumors.