What is Endometriosis? And How Can it Impact My Fertility?

Discover more about this disease and its physical and emotional effects.

Endometriosis is a difficult to live with and often silent disease that impacts the lives of women around the world. Not only is it the cause of incredible pain and emotional distress, it can cause fertility problems that can be complex to treat. Many women live with endometriosis for years before receiving a diagnosis and doctors often struggle to differentiate the symptoms of endometriosis from other conditions. We take a closer look at what endometriosis is, how it can be treated, and its impact on fertility, below.

What is endometriosis?

Endometriosis is a condition where the cells that make up the lining of the womb start to grow in other parts of the body. This could be on the outside of the womb, the fallopian tubes, the lining of the pelvis, and elsewhere in the body. These out-of-place cells react to the same menstrual cycle as the womb lining. They break down monthly, but the discarded cells have nowhere to go and this creates a range of complex health problems, including cysts, scar tissue, and bowel issues. It’s unclear exactly what causes endometriosis, but there are a number of theories. Scientists believe it could be due to a faulty immune reaction or to blood cells carrying endometrial tissue elsewhere in the body.

What are the symptoms of endometriosis?

The symptoms of endometriosis vary from women to women, as does the severity of these symptoms. Common symptoms include:

• Pain in the abdomen and lower back – this usually flares up during periods
• Extreme period pain
• Pain during sex
• Bladder and bowel problems
• Sickness and diarrhea during periods
• Fatigue
• Difficulty conceiving
• Emotional distress and depression

How is endometriosis diagnosed?

Endometriosis is diagnosed through a procedure called a laparoscopy. This is where a thin scope is inserted into the abdomen to view the pelvis and internal organs. This is the only test that can reveal whether endometrial tissue is growing outside of the womb. However, the diagnostic process can be slow and frustrating for many women. The symptoms of endometriosis can be very similar to those caused by other conditions and diseases. Persistent pelvic pain can lead to tests for endometriosis, and ultrasounds, blood tests, and pelvic exams may be carried out before a definitive laparoscopy.

What is the treatment for endometriosis?

There are a range of potential treatments for endometriosis, but no definitive cure. Treatments could include pain medication, hormone-based therapy including hormonal contraceptives, and surgical removal of endometrial tissue. Surgery may be carried out through a laparoscopy or a laparotomy. A laparotomy is a more sizable operation than a laparoscopy, using a larger incision and involving a longer recovery time. In extreme cases, a hysterectomy may be carried out. This is where the entire womb is removed. Although surgical treatments may provide relief for extended periods of time, there is no guarantee that rogue endometrial cells will not return to cause further symptoms. The condition is less likely to return after a hysterectomy, but there is no certainty that this will be the case.

Who suffers from endometriosis?

Any woman can develop endometriosis as the cause remains unknown. However, there are certain groups of women that are more likely to develop symptoms than others. There appears to be a genetic factor, and women whose mothers or female family members have suffered from endometriosis are more at risk. Women who have never given birth, have short menstrual cycles with long bleed times, and those of Caucasian or Asian ancestry are also more likely to develop the condition. Endometriosis is a very common condition and affects around 1 in 10 women around the world.

How is endometriosis classified?

The American Society of Reproductive Medicine has created a system of classification for endometriosis. The system is based on the extent of tissue spread, the involvement of pelvic structures, adhesions to pelvic structures, and the blockage of fallopian tubes. Level of pain is not taken into account in this classification system. The stages are:

• Stage 1: Minimal
• Stage 2: Mild
• Stage 3: Moderate
• Stage 4: Severe

How does endometriosis affect fertility?

Around a third of women with endometriosis suffer from fertility problems. This can be because the egg adheres to the extra endometrial tissue and cannot easily pass down the fallopian tubes to be fertilized. It can also cause swelling and scarring around the fallopian tubes and uterus that make it more difficult for the egg to travel and adhere. The good news is that most women who suffer from mild to moderate endometriosis can get pregnant, and pregnancy can have a beneficial impact on endometriosis. The hormones produced during pregnancy inhibit the growth of endometrial tissue, breastfeeding can have a similarly positive effect.

What are the options open to women who cannot conceive due to endometriosis?

If a woman who is trying to get pregnant cannot conceive due to endometriosis, surgical intervention to remove endometrial tissue is usually required. This may be performed through a laparoscopy or a laparotomy. Women who are struggling to get pregnant may choose assisted reproductive techniques to increase their chances of pregnancy. These include Intrauterine Insemination (IUI) and In Vitro Fertilisation (IVF). Women who are living with endometriosis may have a lower chance of successfully conceiving using these methods. However, success rates depend on the severity of their endometriosis.

What is the emotional impact of endometriosis?

Every women experiences endometriosis differently and the severity of the condition and level of pain, along with the impact of fertility issues, can affect the mental toll of the condition. Living with high levels of pain for extended periods of time, struggles with fertility, and a long diagnosis period can all have an emotional impact. Depression and anxiety are common mental side effects of living with endometriosis.

I’m living with endometriosis. Where can I get support?

There are a number of support organizations in the US that provide information and support for women living with endometriosis across the country. These include the Endometriosis Association (EA), The Endometriosis Coalition, and the Endometriosis Foundation of America (EFA). If you are worried that you are suffering from endometriosis, visit your doctor or gynecologist to discuss your symptoms.

At coparents.com, we support men and women who are looking to expand their family. Visit our forum to connect with donors and hear from those who are overcoming fertility challenges.