FAQs you Need to Know about Endometriosis

Experiencing endometriosis can be painful, frustrating & exhausting. Tack on fertility issues and you’re understandably overwhelmed, but not alone! Endometriosis is a condition that affects 1 in 10 women, where cells that should be inside the uterus, grow on the outside. We know you have questions, & our very own Dr. Sarah M. Moustafa, an expert on endometriosis here in New Jersey & New York, has answers. Below she addresses some of the most frequently asked questions we see in our practice.

What is endometriosis and what are the most common symptoms?

The most common symptoms of endometriosis include painful periods, painful intercourse, and infertility.

Endometriosis is a condition where cells that should be inside the uterus, grow on the outside. They can be on the inside of the abdominal wall, on the ovaries, overlying bowel or bladder. These lesions create a lot of local inflammation – which can cause damage and scarring inside the pelvis.

Are there known causes of endometriosis?

​There are several theories. One theory is “retrograde menstruation”, which refers to some of the period flow going out of the fallopian tubes and into the abdomen (rather than exiting from the vagina), and allowing some uterine cells to establish and grow there. All women experience retrograde menstruation to some extent – it is not clear why some are more prone than others to developing endometriosis. Abnormalities of the uterus or vagina that may increase retrograde flow are associated with a high risk of endometriosis. Another theory is that stem cells are converting to uterine cells in inappropriate places. This is supported by the fact that endometriosis has been found in places not connected to the pelvis – like the lung or brain – but this is very rare. Lastly, there is likely some genetic predisposition to endometriosis, as this disease does run in families.

Is endometriosis a progressive disease?

Yes, endometriosis is a progressive disease. The inflammation made by the lesions causes damage to the surrounding parts over extended periods of time. For example, endometriosis found in cysts on the ovary (endometriomas) can reduce egg reserve in the long run. Whether or not you are trying to conceive, it is important to treat endometriosis in order to reduce the risk of its damaging effects over time.

How is endometriosis diagnosed and does it always require surgery?

The best way to diagnose it is via laparoscopy (a small surgery to put a camera in the abdomen and look directly for lesions). It can also be diagnosed by ultrasound, ONLY if endometriosis is growing in cysts on the ovaries. Because not everyone with endometriosis has it on their ovaries, and surgery is an invasive step… doctors often need to rely on presumptive diagnosis based on a patient’s history.

One less invasive test is commercially available at this time – the Receptiva test. This tests a marker associated with endometriosis in the uterus. If you have symptoms of endometriosis or infertility, ask your REI if this test is right for you.

Does having an endometriosis diagnosis mean I will have trouble getting pregnant?

Some patients with endometriosis never experience symptoms or infertility, and only learn they have endometriosis incidentally later in life. However, it does significantly increase the risk of infertility. It can affect fertility by a number of ways: scarring of the fallopian tubes, reduction in egg reserve, or creation of an inflammatory and abnormal environment that reduces an embryo’s chance of success. If you have been diagnosed with endometriosis, it is recommended to consult with an REI for a fertility evaluation and an understanding of any indicated fertility assistance (whether now or later).

Can a person have asymptomatic endometriosis?

Absolutely. In particular, it should be considered as a possible “silent” contributor in unexplained infertility (patients who have normal testing and history but are still struggling to conceive). Some studies have shown about 50% of unexplained infertility patients have endometriosis.

How common is endometriosis? How many people in the US suffer from it?

1 in 10 women overall, but as high as 25-50% of women with infertility.