Living with endometriosis & infertility

Endometriosis is a common, often misunderstood condition that affects millions of women worldwide. It occurs when tissue similar to the lining of the uterus, known as the endometrium, grows outside of the uterus, typically in the pelvic region. The abnormal tissue growth can cause a range of symptoms and fertility issues.

Understanding endometriosis is crucial for early detection and effectively managing the condition. By recognizing the signs and with medical intervention, women can receive the care they need to alleviate their symptoms and address the complications they experience. 

Read on to learn more about endometriosis and how it can impact a woman's quality of life, reproductive health and journey to pregnancy.

What is endometriosis?

Endometriosis is a chronic condition that affects approximately 10-20% of women of reproductive age. It occurs when the endometrium, which is meant to line the inside of the uterus, grows outside of the uterus, usually in the pelvic area. This tissue can grow on organs, such as the ovaries, fallopian tubes and the lining of the pelvic cavity, and causes inflammation, scarring and adhesions, which are abnormal tissue connections. 

It can also lead to the formation of cysts known as endometriomas. These cysts often cause significant pain, discomfort and, in some cases, may require surgery.

With endometriosis, the displaced endometrial tissue in the body continues to act as it normally would if it were inside the uterus, meaning it thickens, breaks down and bleeds with each menstrual cycle. However, because this tissue is located outside of the uterus, it has no way to exit the body. This leads to trapped tissue in the pelvic area, causing painful, problematic symptoms.

What are the symptoms of endometriosis?

The most common symptom of endometriosis is pelvic pain. This pain can range from mild to severe and may occur at any time during the menstrual cycle. Other common endometriosis symptoms include:

• Painful periods 
• Pain during or after sex 
• Excessive bleeding during periods 
• Infertility or difficulty getting pregnant
• Painful bowel movements or urination during periods
• Fatigue
• Bloating
• Nausea and vomiting during periods
• Painful ovulation
• Lower back pain

It's important to note that the severity of symptoms does not necessarily correlate with the severity of the condition. Some women with mild endometriosis may experience severe symptoms, while others with severe endometriosis may have little to no symptoms.

In addition to physical symptoms, endometriosis also has an emotional impact. The chronic nature of the pain can lead to anxiety, depression and a decreased quality of life. Additionally, potential fertility issues caused by the condition can be particularly distressing for women who are trying to get pregnant. 

How is endometriosis diagnosed?

The only way to definitively diagnose endometriosis is through a surgical procedure called laparoscopy. During this procedure, a small incision is made in the abdomen and a thin, lighted tube with a camera is inserted to view the pelvic organs and look for signs of endometriosis.

In some cases, a doctor may suspect endometriosis based only on symptom presentation and medical history. A pelvic exam may also be performed to check for any abnormalities or masses. If needed, imaging tests, such as ultrasounds and MRIs, can be used to identify larger endometriomas or cysts.

A diagnosis of endometriosis can provide immense relief to women suffering from symptoms without understanding why. Knowing the cause can empower women to seek appropriate treatment and support. 

“Endometriosis has been called the silent epidemic because it causes a great deal of pain and can also cause infertility in some women, but it’s difficult to diagnose. We don’t have a specific test that indicates endometriosis is present. It often takes surgery to fully diagnose it.” – Catherine Ryan, MD, Gundersen Health System, OB-GYN

What causes endometriosis?

The exact cause of endometriosis is still unknown, but there are several theories as to why it may occur. Some of the most common theories include:

•    Retrograde menstruation

This theory suggests that during periods, some of the tissue shed from the uterus may flow backward through the fallopian tubes and into the pelvic cavity where it can implant and grow.

•    Genetics 

Endometriosis tends to run in families, which suggests there may be a genetic connection with the condition.

•    Immune system dysfunction 

Some research suggests that women with endometriosis may have a weakened immune system, allowing for tissue to abnormally grow and thrive outside of the uterus.

•    Hormones 

Estrogen is known to promote the growth of endometrial tissue. Some researchers believe that high levels of estrogen may contribute to the development of endometriosis.

What are the treatment options for endometriosis?

Treatment for endometriosis varies and depends on several factors, such as age, fertility desires, severity and symptoms experienced. There is currently no cure for endometriosis, but there are several treatment options available to help manage symptoms and improve fertility, including the following: 

•    Pain medication

Over-the-counter pain relievers like ibuprofen or acetaminophen can help alleviate the chronic pain and discomfort caused by endometriosis. For more severe pain, doctors may prescribe stronger medications.

•    Hormone therapy

Hormone therapy is a common treatment for endometriosis as it helps to regulate the menstrual cycle and reduce the growth and shedding of the endometrial tissue. Some common hormone therapy options include birth control pills, gonadotropin-releasing hormone (GnRH) agonists, and progestin therapy.

These therapies aim to reduce or eliminate menstruation, thereby decreasing the opportunity for endometrial tissue to cause problems. However, it is important to note that hormone therapy is not suitable for women trying to conceive.

•    Surgery

In some cases, surgery may be necessary to remove endometrial tissue, adhesions and cysts. This can be done through laparoscopy or laparotomy, depending on the severity and location of the endometriosis.

•    Lifestyle modifications 

Important lifestyle factors like diet and exercise are thought to influence the risk and severity of endometriosis; although, research in this area is still developing. Some women may experience pain improvement through exercise and relaxation techniques. When painful intercourse is a problem, changing positions can help. With less severe cases of endometriosis, expectant management, or close monitoring under the guidance of a healthcare provider, may be preferred over immediate treatment.

How does endometriosis affect fertility?

For women with endometriosis, the biggest concern is often how it will affect their fertility and ability to become pregnant. 

“About 25% of women that I see in the Fertility Center have endometriosis, which is a lot. And again, most of them don’t know that they have it,” Dr. Ryan says. 

Endometriosis can affect fertility in several ways. The abnormal tissue growth caused by the condition can lead to scarring and adhesions, which can block or distort the fallopian tubes. This may prevent eggs from being fertilized or reaching the uterus.

Endometriosis can also affect egg quality, making it more difficult to conceive. Additionally, the inflammation and hormonal changes caused by endometriosis can affect the implantation of a fertilized egg in the uterus.

For those seeking to become pregnant, endometriosis can be a source of frustration and disappointment. Fertility treatments may be necessary for conceiving, which can be emotionally and financially taxing. However, many women with endometriosis are still able to conceive and have healthy pregnancies, either naturally or with the help of fertility treatments. 

Check out this article to learn more about infertility and common misconceptions. 

Fertility treatments

There are several fertility treatments available to help women conceive. These include intrauterine insemination (IUI), in vitro fertilization (IVF) and surgery to remove any blockages or scarring in the reproductive organs.  

Gundersen is here to help you on your journey to pregnancy and conceiving with endometriosis. It is important to talk with your doctor and discuss all available treatment options to determine the best approach for your individual needs and goals. Connect with a Gundersen Fertility provider or visit our website for more information.  

Endometriosis is a complex condition that affects millions of women worldwide. While there is currently no cure, there are several treatment options available to help manage symptoms and improve fertility. With proper management, it is possible to live a full and healthy life with endometriosis. Seeking support from endometriosis support groups can also provide emotional relief and a sense of community. Education is key to raising awareness about endometriosis and ensuring all women receive the attention and care they need.

If you suspect you may have endometriosis, talk with your primary care provider or connect with a Gundersen Gynecology provider to further assess your signs and symptoms.