Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (54 page)
The most common symptom of endometriosis is severe pain before and during menstrual periods, caused in part by prostaglandins produced by the endometrial implants.
However, some women may have no symptoms at all and are diagnosed only when they’re unable to become pregnant, sometimes due to scars or adhesions that block the release of eggs from the ovaries or their passage into the fallopian tubes, inflammation, or other factors.
Common sites for endometrial implants include the outer surface of the uterus and supporting ligaments, the space between the uterus and the rectum (called the
cul-de-sac
), the ovaries, and the membrane that lines the pelvic cavity. As the implanted tissue grows under the influence of estrogen, it can invade nearby organs, including the intestines and the bladder, causing painful bowel movements, irritable bowel symptoms, diarrhea and/or constipation, and intestinal upsets during menstruation.
A survey by the Endometriosis Association found that more than 87 percent of patients felt fatigued and exhausted; over a third were unable to carry out normal activities one to two days a month, and 57 percent had allergies. Sixty-four percent of the 4,000 women surveyed experienced painful intercourse. In addition, 43 percent of the women reported low resistance to infection, around 30 percent had low-grade fevers, and others reported severe problems with yeast infections (
candidiasis
) and yeast allergies. Up to 65 percent of women with endometriosis experience their first symptoms before the age of 20.
While endometriosis can produce nodules or cysts on the ovary and cul-de-sac that can be felt during a pelvic exam, laparoscopy is the gold standard for a diagnosis.
Laparoscopy
uses a thin, lighted telescope to look inside the pelvis and inspect the reproductive organs. It’s done under general anesthesia, using small incisions in the abdomen to insert the fiber-optic scope to view the pelvic organs, and surgical instruments for a biopsy.
Implants can be vaporized (burned away),
excised
(cut out), or
ablated
(destroyed) during later laparoscopy using a laser or
electrocautery
instruments.
Medical treatment is aimed at suppressing the female hormones that fuel the growth of endometrial implants, using various hormones to prevent or lessen menstruation. It’s not a cure; recurrence rates range from 30 to 60 percent. Surgery can eradicate endometrial implants and remove adhesions that cause pain, but cannot cure the disease.
Oral contraceptives are usually the initial treatment for endometriosis. Various formulations and strengths of estrogen and progesterone act together to prevent ovulation; the progestins in the pill suppress growth of endometrial tissue, reduce production of prostaglandins, and lessen pain. Oral contraceptives provide short-term relief in 50 to 80 percent of women and are considered the first-line treatment of endometriosis.
25
Danazol (Danocrine, Cyclomen)
is a derivative of testosterone, which reduces the amount of estrogen produced by your body to menopausal levels. A six-month regimen reduces the size and extent of endometrial implants by up to 50 percent; a majority of women experience pain relief, and as many as 70 to 100 percent of women go into remission. Danazol has androgenic side
effects, including acne, growth of facial hair, water retention, and weight gain. It can also raise cholesterol. Danazol cannot be used during pregnancy.
27
In recent years newer drugs have largely replaced danazol.
GnRH agonists
mimic the natural
gonadotropin releasing hormone
produced by the body that regulates estrogen production, but are much more potent. These drugs fool the body into thinking you’re in menopause, reducing the symptoms of endometriosis. GnRH agonists approved by the FDA for endometriosis come in several forms, including
leuprolide (Lupron)
, given as injections;
nafarelin acetate (Synarel)
and
buserelin acetate (Suprefact)
in nasal spray form; or
goserelin acetate (Zoladex)
, an implant placed under the skin of the abdomen.
27
These relieve pain in most women and produce up to a 90 percent regression of implants. The artificial menopause they create has all the symptoms of natural menopause: hot flashes, vaginal dryness, decreased sex drive, mood swings, and fatigue. GnRH agonists cannot be used during pregnancy.
27
GnRH agonists also cause accelerated bone loss (around twice the normal rate of the first year of menopause) increasing the risk of osteoporosis. If prolonged treatment is needed, drugs are given to prevent bone resorption, including
alendronate (Fosamax)
and
risedronate (Actonel)
.
Other FDA-approved hormonal treatments for endometriosis are the progestogens
depot medroxyprogesterone acetate (Depo-Provera)
and
norethindrone acetate (Aygestin)
, which inhibit the growth of endometrial tissue.
27
Surgery is usually done when hormonal therapy fails or if a woman doesn’t wish to take hormones. Endometriosis surgery is usually done laparoscopically, making small incisions to admit tiny surgical instruments, lasers, or electrocautery devices that remove or destroy implants.
Laparoscopic surgery is done as a day surgery under general anesthesia. Laparoscopic surgery causes far less pain than open abdominal surgery, and recovery is faster; most women return to work within a week. For severe, invasive implants in and around the bowel or bladder, open abdominal surgery (
laparotomy
) may be needed.
Surgical procedures to eradicate implants should always be performed by a skilled endometriosis specialist.
Endometriosis takes its biggest toll during a woman’s reproductive years, sometimes causing pain during her teens.
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. Some studies have suggested 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, but experts say evidence to date does not support its use.
28
For some women, pregnancy brings temporary relief from endometriosis, and menopause usually ends symptoms in women who have moderate disease.
Estrogen therapy (ET)
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 may have an increased risk of ovarian and breast cancer, as well as melanoma.
Interstitial cystitis (IC)
is another chronic pain condition that some scientists suspect may have an immune component.
IC (also called
painful bladder syndrome
or
bladder pain syndrome
) is a chronic disorder that causes nerve endings in the bladder 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 has suggested that IC may be an autoimmune problem, with autoantibodies attacking bladder tissue.
29
Around 25 percent of women with IC are found to have increased levels of
antinuclear antibodies (ANAs)
, but, again, these are also found in healthy women. 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. However, it’s not known exactly what role these autoantibodies may play.
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. One 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 (see
page 420
).
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. However, experts say there are probably multiple causes for IC, which affects as many as 3.3 million U.S. women.
30
The most common symptom is an urgent need to urinate, sometimes as many as 60 times over a 24-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
.
31
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. Distention of the bladder with water (
hydrodistention
) may have therapeutic effects for some women.
30
Bladder training and physical therapy, along with other self-care, noninvasive treatments, are recommended as first-line treatments by the American Urological Association (AUA).
32
Dimethyl sulfoxide (DMSO)
is an FDA-approved drug that is infused into the bladder by a catheter weekly (or every other week) for four to six weeks.
32
Because DMSO is absorbed into the bladder wall, it may directly lower inflammation and block pain, as well as prevent muscle contractions that cause urinary pain, frequency, and urgency.
32
Lidocaine
has also been used as a bladder infusion and has helped reduce pain for some women.
32
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 in some women, and seems to increase bladder capacity, and the antihistamine
hydroxyzine (Atarax)
. Since both can cause drowsiness, they’re usually taken at bedtime.
Some women have found injections of
Botox (botulinum toxin)
into the bladder wall helpful. But it can be painful and may cause damage requiring periodic catheterization.
32
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.
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