Endometriosis is one of the most common causes of pelvic pain and infertility in women. William Davis, MD, gynecologist in the UI Women’s Health Center, located in University of Iowa Hospitals and Clinics, talks about endometriosis:

What is endometriosis?

The endometrium is the lining of the uterus, and endometriosis is lining of the uterus someplace where it shouldn’t be. So whenever a woman has a menstrual period, the cells that are someplace where they shouldn’t be, also have a period. So if it’s a place where there’s no way for it to escape, it can cause significant pain and scar tissue.

Who is typically the woman that develops endometriosis?

They used to call it the “rich woman’s disease” because they typically had fewer children, they had children at a later age, and they commonly didn’t breast feed, so those are the group of women with whom you see it more often. We also see it more likely in families, so if a mother or a sibling has it, than a woman would be three times more likely to have it herself.

You mentioned family relations—is that common in the women who develop this?

Yes. We also see it less likely in women who take birth control pills for a long period of time, particularly early in life. So the birth control pill, or hormonal contraception, actually seems to reduce its likelihood. 

What sorts of symptoms are common with endometriosis?

The triad, or the three most common symptoms are:

• Painful periods (or Dysmenorrhea)
• Discomfort with intercourse, not upon entrance but deep inside, typically like something’s getting hit
• Pelvic pain in general any time during the cycle

Is the pain associated with endometriosis different from the pain a woman experiences during a normal menstrual cycle? How is it different?

Actually, only 20 percent of women with severe cramps have endometriosis. For most women with bad cramps, it is a biochemical reason, not due to endometriosis. But certainly, when one sees that, one always has to think about the possibility of endometriosis.

How is endometriosis diagnosed?

Actually, the only way to diagnose it for certain is to do a minor surgery called a laparoscopy, so that’s the so called belly button surgery or Band-aid surgery, where you look inside and you can see implants and areas where the lining of the uterus cells shouldn’t be. One can sometimes see it on ultrasound—on vaginal probe ultrasound—and if it’s in the ovaries, you can see a characteristic-type of ovarian cyst, which in lay language is sometimes called the chocolate cyst so it has a different appearance than typical ovarian cysts.

What are the treatment options for endometriosis?

There is quite a variety, everything from simple things like taking birth control pills, sustained or extended use, and that potentially is even better. We know that endometriosis gets better during pregnancy, so you can do a “pseudo-pregnancy” by using high doses of progesterone either by mouth or by shot.

One of the older methods is to use a male hormone-like drug called Danazol, but because it has some male hormone side effects, women prefer the more modern treatment, which is pseudo menopause. We know that endometriosis gets better when a woman goes through menopause and female hormone levels drop. So we have a drug that’s reversible that replicates menopause, and that’s called Lupron. Then there’s surgical treatments, some through the laparoscope (that instrument that I talked about before), all the way up through a major open abdominal surgery.

Once treated can endometriosis reoccur?

It certainly can, and in fact I’ve really changed my attitude in the last five or 10 years in terms of women with significant endometriosis and fertility. If I see somebody that has a lot of scarring and significant involvement of their ovaries, I tend to encourage them to do in vitro fertilization, or IVF, sooner rather than later. That’s been a real change in my attitude in the last few years. It certainly can come back to haunt people, and you want to get your childbearing out of the way, before that potentially might happen.

Can endometriosis affect the woman’s ability to become pregnant?

It certainly can. At its early stages it’s debatable. There is stage one through four, with one being minimal—so just a few dots of these cells someplace where they shouldn’t be—all the way up through stage four which is severe, where there’s a great deal of scar tissue and involvement of bowel, bladder, and ovaries. It can be very, very serious and very debilitating. With stage one, one large study in Canada said it does cause mild infertility and one in Italy said not. So that’s debatable, but certainly when you see stages two through four, it surely can affect fertility.

Left untreated can endometriosis be the precursor for a woman to develop certain cancers?

Actually, I’ve only seen it once in 30-some years, so though some of those cells converted to what would amount to cancer of the uterus (and fortunately the patient survived it because it was caught early), so that is a theoretical possibility, but in my life, it’s quite rare. When somebody has a hysterectomy for endometriosis and they have their ovaries out and go on hormone replacement afterwards, it’s probably prudent to take a very small dose of progesterone along with that. That’s normally something you wouldn’t do after a hysterectomy, but because if there are any of those little cells still hidden that weren’t removed from the surgery, they could potentially develop into a cancer. So that’s just one little warning that I tell patients.

If a woman wanted to make an appointment to speak with someone about endometriosis, where should she start?

Actually it would be in our division in the Ob-Gyn Department, which would be Reproductive Endocrinology and Infertility. Even though they may not want a pregnancy and may be older, it’s a disease that we deal with so we’re comfortable with women of all ages.

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William Davis, MD

UI Women’s Health Center

Reproductive Endocrinology and Infertility