Endometriosis is a painful and distressing condition which affects women of childbearing age. The National Institute of Health estimates that this disease may impact up to 10% of women during their fertile years: this means that approximately 5 million women in the US suffer from endometriosis. Aside from the pain, discomfort, and inconvenience these patients experience, many also find that endometriosis is preventing them from conceiving. Understanding how endometriosis can impact your fertility and the treatment options open to you is important. Here’s what you need to know.

What is endometriosis?

In endometriosis, the tissue that usually lines the uterus (endometrium) is found growing in other places throughout the pelvic and abdominal cavity. These cells form deposits (also known as lesions or endometriosis implants) which bleed and can cause scarring and damage to the reproductive organs. They can also cause adhesions, where organs are stuck together. In the ovaries, cysts called endometriomas (also known as chocolate cysts) can form, causing blockages to the fallopian tubes. The symptoms of endometriosis include:

• Pelvic pain, often severe
• Abnormally heavy periods
• Ovarian cysts
• Pain during intercourse
• Infertility

How is endometriosis diagnosed?

Endometriosis can only be officially diagnosed through pathological evaluation of lesions at the time of surgery. The surgery is conducted laparoscopically, using a small incision and a lighted fiber optic tube with a camera which allows them to see inside the abdominal cavity.  However, if the patient has a history of the classical symptoms, that can suggest that some degree of endometriosis is present.

Whether or not your physician decides to schedule a laparoscopic procedure will usually depend on the severity of your symptoms, your fertility goals, and your age. Many doctors prefer to go ahead with an assumption of endometriosis and attempt some of the less invasive treatments before resorting to surgery.

Our fertility specialist, Dr. Carolyn Alexander, better explains what endometriosis is in this video.

How does endometriosis affect fertility?

Endometriosis and infertility are closely related. According to some studies, between 30-50% of women with endometriosis also experience difficulty conceiving. For a woman with untreated endometriosis who is trying to get pregnant, her chance of conceiving each month (known as the monthly fecundity rate) is only 2-10%, which can be very discouraging when you compare it to the monthly fecundity rate of the general population, which is 15-20%.

Exactly how endometriosis is causing a patient’s infertility can sometimes be unclear, and depends on the stage and severity of the disease. One or more factors may contribute to the problem, including:

• Tube blockages

Endometrial deposits can cause obstructions in the fallopian tubes which block the egg from traveling through the tubes during normal ovulation. This physical blockage can prevent fertilization.

• Ovarian cysts

The “chocolate cysts” which endometriosis can cause in the ovaries may interfere with normal ovulation, can block egg transport, and may even damage the ovaries, resulting in decreased ovarian reserve.

• Toxicity in the pelvic (intraperitoneal) environment from endometriotic deposits

Infertility can occur even in relatively mild cases of endometriosis where there are no physical blockages or adhesions that prevent normal ovulation. Exactly how endometriosis causes infertility in these cases is not completely clear, but studies have indicated that the presence of endometriosis changes the intraperitoneal environment. Either the endometrial cells themselves or the body’s immune response produce biochemical substances such as prostaglandins which have anti-fertility effects and may make it more difficult to conceive. 

Compounding the fertility problem is the fact that many treatments designed to combat the pain and heavy periods caused by endometriosis are incompatible with pregnancy: birth control pills and other hormonal treatments may halt the progression of the disease, but these medications work largely by suspending menstruation and the natural ovulation cycle. A woman who wants to become pregnant will have to suspend these endometriosis treatments, which ultimately results in the return of her symptoms. In these cases, time is of the essence: getting pregnant before severe symptoms return is the best case scenario.

Laparoscopic surgery to remove endometrial lesions is a useful treatment, but depending on the size and location of the lesions and the age of the patient, it can have a detrimental effect on ovarian reserve. For younger patients with advanced endometriosis, surgery to remove large endometriomas can improve fertility, and may be indicated before beginning an IVF cycle. For older patients, proceeding directly to IVF is usually a better course of action.

Is IVF a good treatment option for women with endometriosis?

IVF is usually the best plan for infertility patients with endometriosis, and the prognosis is surprisingly good. We find that IVF patients with this diagnosis generally do just as well as our patients who do not have endometriosis. IVF can provide hope for women who have been struggling with this disease for a long time and worried they would never be able to achieve a healthy pregnancy. You may need some special monitoring and careful management of fertility medications, which can temporarily aggravate endometriosis symptoms, but your chances of success are good. Getting pregnant often brings relief from the pain of endometriosis for the duration of the pregnancy, though once the baby is born you will probably need to resume treatment for your symptoms.

Suffering from endometriosis can be debilitating. When you add the heartbreak of infertility to that pain, it can be an especially isolating experience. If you have endometriosis or suspect that you might, it is important to find a medical team that understands this disease and can guide you through your options for treatment and for fertility.

Even if you are not ready to conceive right now, it is important to seek help: untreated endometriosis can get progressively worse, and you may wish to take proactive steps to preserve your fertility. With the right support, endometriosis does not need to stand between you and your dreams of building a family.