Endometriosis causes pain and sometimes infertility for at least 5.5 million American women. But an accurate diagnosis and relief can be hard to come by. In this exclusive interview, a top doctor explains why, and answers key questions about this often-misunderstood disorder. Plus, how much do you know about women’s health? Take our quiz to find out...
You’ve struggled with heavy periods and pelvic pain for years. And you haven’t been able to get pregnant. Doctors have treated you for a variety of conditions but can’t ease your discomfort or aid fertility.
Finally, you’re diagnosed with endometriosis.
This story isn’t uncommon: The average delay in a diagnosis is 8-10 years, says David Redwine, M.D., a gynecologist, surgeon and author of 100 Questions and Answers About Endometriosis (Jones and Bartlett).
Endometriosis symptoms can mimic other conditions, and doctors aren’t attuned to it, Redwine says. And because pain starts during puberty, some women don’t seek help right away.
“[Teen girls are] often told it’s ‘just cramps’ or ‘part of being a woman,’ ” he says. “This can set the stage for years of silent suffering, because she believes what she’s going through is normal.”
Redwine has devoted his career to shedding light on this often-misunderstood disease. In 1987, he helped establish the Endometriosis Treatment Program at St. Charles Medical Center in Bend, Ore., where his pioneering work has led to new directions in research and treatment.
In this exclusive interview, he shares the latest insights into the condition and how to get the best care.
How does endometriosis develop?
The origin is still being debated, but I believe endometriosis is present from conception.
According to this theory, as the embryo develops, cells normally migrate down to what will become the abdominal and pelvic area. But cells carrying genetic tags for endometriosis never reach their intended location in the uterus, fallopian tubes and ovaries. Instead, they wind up elsewhere in the body.
Some may be deposits of actual [endometrial cells]. Others embed in tracts of tissue that will later change into endometriosis via a process called metaplasia.
How do you know if you have the disorder?
The chief symptom is pain, ranging from mild to severe. It’s often specific to where the endometriosis is located.
The most common area is the bottom of the pelvis, called the cul-de-sac, right next to the rectum and at the end of the vagina. A woman with endometriosis there may experience pain with bowel movements or during intercourse, especially when she’s having her period.
If it’s on the bladder, urination can hurt. On the intestinal tract, bowel movements can be severely painful. On the diaphragm, it may cause pain in the right chest and shoulder area.
Occasionally, endometriosis winds up in a surgical scar – such as a Cesarean section or hysterectomy – where it may have been moved accidentally during an operation. The woman may develop a painful lump there, which swells during her menstrual flow.
In some cases, the pain isn’t easy to pinpoint. If a woman has multiple endometriosis areas, she may feel like she hurts all over.
Endometriosis pain begins around puberty. Do symptoms change over time?
The number of affected areas doesn’t change, but the pain may increase.
At puberty, when the ovaries start producing estrogen, those tracts of tissue begin changing into endometriosis. Most of the endometriosis that will ever form in a woman’s body is present by her mid-20s. But some tissue may continue changing until her mid-30s.
During childbearing years, endometriosis generally hurts more when there’s lots of estrogen around, and less when there’s little estrogen.
About 30%-40% of women with endometriosis have trouble conceiving children, according to the National Institutes of Health. Why does it lead to infertility?
It causes chronic inflammation in the pelvis. As a result, the body produces extra fluid there, just like a sprained ankle swells up.
When an egg pops out of the ovary, it’s bathed in this fluid, which contains inflammatory chemicals that can damage it. The fluid can also travel down the fallopian tubes and affect any sperm in its path.
Also, the uterine lining is different in women with endometriosis, making it harder for a fertilized egg to implant. For some, the degree of abnormality is slight, which is why some women are able to get pregnant without treatment. For others, it’s so great that pregnancy is nearly impossible.
Endometriosis is sometimes misdiagnosed as a pelvic infection. Are they related?
No. But both can cause pelvic pain.
A doctor may mistakenly diagnose an infection and prescribe an antibiotic to treat it.
Endometriosis pain tends to wax and wane with the menstrual cycle. If the doctor prescribes an antibiotic at the worst time of the month and then the woman feels better in a week or so, it looks like a response to the medicine, even though it’s not.
I see many patients who’ve received round after round of antibiotics before coming to me. It’s frustrating for them, because nothing seems to work. And the reason it’s not working is because they don’t have [an infection].
How do women get a correct diagnosis?
For a doctor familiar with endometriosis, a medical history and physical exam will usually point toward the disorder.
Sometimes, an imaging test – such as an ultrasound, MRI or CT scan – is also ordered. That may find larger endometriosis growths, such as ovarian cysts caused by the disease. However, most spots of endometriosis are flat, like freckles on the skin, so they don’t show up on scans.
To know for sure whether you have endometriosis, the doctor needs to look inside your abdomen with laparoscopy. In this minor surgery, a slender viewing tube is inserted into the abdomen through a tiny incision. A doctor who knows what to look for can spot the difference between normal tissue and endometriosis.
Once diagnosed, endometriosis can be treated with medication. What are the pros and cons?
The main medicines are hormonally based. Some women feel better while on them, but symptoms return once it’s stopped.
[Medications prescribed include] birth control pills, which replace fluctuating levels of estrogen during the menstrual cycle with a low, steady level. Potential side effects include irregular bleeding, weight gain, high blood pressure, depression, gallstones, blood clots in the legs, heart attacks and strokes. Serious side effects are rare, however.
Gonadotropin-releasing hormone (GnRH) agonists block the production of hormones that stimulate the ovaries to make estrogen. This mimics menopause. Potential side effects include hot flashes, night sweats, vaginal dryness, bone loss, joint aches and pains, memory problems, weight gain and mood swings. Some of these effects may continue long after the medicine is stopped.
GnRH agonists are also expensive, costing between $300 and $500 a month.
Are there other medication options?
Some women seek help at a pain management center – a clinic where several types of health care providers treat pain using a multidisciplinary approach.
Narcotics and other pain medicines may relieve pain, but they don’t treat the underlying disease.
Does a healthy lifestyle help?
Practicing relaxation techniques such as meditation and staying physically active can be useful as coping mechanisms and beneficial for overall health. But they won’t make your endometriosis get better or go away.
There’s also a shred of evidence that foods high in omega-3 fatty acids, such as fish, may reduce symptoms a bit by helping protect against inflammation. But they’re not a cure for endometriosis.
If these measures don’t ease symptoms, what’s the next step?
Surgery is the most effective treatment for endometriosis. It allows the surgeon to go around and under all areas of disease for the most complete removal of endometriosis.
In most cases, surgery can be done by laparoscopy. As with laparoscopic testing for endometriosis, small surgical tools, such as tiny scissors, are passed into the abdomen through a slender tube. Other small tools can be inserted through separate incisions.
Besides scissors, excision can be performed with a laser, electrosurgical instrument [using a high-frequency electric current] or harmonic scalpel [using ultrasound].
If all the endometriosis is removed, it doesn’t matter how it’s done.
Sometimes it isn’t all removed, because that can be a difficult surgery and many doctors aren’t trained to do it. I see women who’ve had up to 15 previous surgeries.
Does surgery stop pain permanently?
If your pain is solely due to endometriosis and all the disease is cut out, then 100% of your pain will be gone afterward.
But some women with endometriosis have more than one source of pelvic pain. For example, the uterus might hurt because of adenomyosis [endometrium that grows into the muscular wall of the uterus] or uterine fibroids [noncancerous growths in the wall of the uterus].
If 60% of your pain is due to endometriosis and 40% to another condition, then 40% of the pain will remain after endometriosis surgery.
How does surgery help with infertility?
When the only barrier to getting pregnant is the inflammatory part of endometriosis, surgery to remove all the disease will solve the problem.
But when there’s also significant abnormality in the lining of the uterus, surgery won’t address that issue.
Assisted reproductive technology procedures, such as in vitro fertilization (IVF), can help some women get pregnant. They can bypass some roadblocks created by endometriosis, but they don’t treat the disease itself.
If a woman has pelvic pain and suspects it’s endometriosis, what should she ask her doctor?
Make sure the doctor answers the following:
Could endometriosis be causing my pain?
If medication is prescribed for endometriosis, what’s the goal of this treatment?
How long will I need to take the medicine before you decide if it’s working?
If surgery is recommended, do you aggressively remove all endometriosis?
Are you comfortable doing surgery on every part of the body where endometriosis might be found, including the bladder, bowel and diaphragm?
For more information on this condition, visit the Endometriosis Association .
And read our article on “Top Chef” host Padma Lakshmi, who gave birth to daughter Krishna in 2010 after years of suffering with endometriosis: Padma Lakshmi’s Endometriosis Struggle .
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