Endometriosis Explained: Expert Answers on Symptoms, Diagnosis, and Treatment

Endometriosis affects millions of people worldwide, yet it’s often misunderstood and underdiagnosed. In this Q&A, Eve Lepage, Clue’s resident fertility nurse and senior reproductive health advisor, answers key questions about the condition. We will look at why endometriosis occurs, why it can be so painful, the long-term effects it may have, and the available treatment options.

1. What is endometriosis, and why does it happen?

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus, most commonly around the organs in the pelvic cavity, such as the ovaries, fallopian tubes, bladder, and other pelvic organs. 

Scientists are still working to understand exactly how and why this happens. The most well-known theory is retrograde menstruation, where menstrual blood that would normally leave the body through the vagina flows backward through the fallopian tubes into the pelvic cavity. 

Other theories suggest that endometrial-like cells may travel through the lymphatic system or blood vessels to other parts of the body. Another theory, called metaplasia, proposes that certain cells outside the uterus can change or “transform” into endometrial-like cells. All of these pathways may be influenced by various factors, which can either promote the movement of these cells or support their growth while they’re outside the uterus.

2. Why is endometriosis so painful?

Endometriosis can be very painful because the tissue that grows outside the uterus causes an inflammatory response, leading to the formation of scar tissue within the pelvis and other parts of the body. This can lead to painful periods, pain during sex, and pain during normal daily activities. 

3. How long does it typically take for someone with endometriosis to get a diagnosis and treatment? Why is the process often so slow? 

It can take, on average, 7-10 years for someone with endometriosis to receive a diagnosis and appropriate treatment. This delay often happens because endometriosis symptoms can be mistaken for other conditions, and there is a lack of awareness and understanding of the condition among healthcare providers and the general population. 

If you think you might have endometriosis, it can be helpful to track your pain and symptoms and share this information with your healthcare provider. You might also want to speak to someone who specializes in gynecology or endometriosis. Being an advocate for yourself can help minimize the time it takes to get a diagnosis. 

4. How is endometriosis treated?

Endometriosis is typically treated with a combination of approaches, tailored to each person’s symptoms, goals, and whether or not they want to conceive. Because it can affect both quality of life and fertility, treatment often requires a holistic, or multimodal approach. 

Options may include hormonal therapies that suppress ovulation, anti-inflammatory medications to help manage pain, and lifestyle changes, such as increasing anti-inflammatory foods like those rich in omega-3 fatty acids.

In some cases, surgery may be considered to remove endometrial lesions or scar tissue, but this is usually reserved for specific situations and should be carefully discussed with a healthcare provider.

5. What surgical options are available for treating endometriosis, what do they involve, and how effective are they?

Surgery won’t cure endometriosis, but it can help control the symptoms. Laparoscopic surgery may be used to explore and surgically remove or destroy endometrial tissue. Surgery leads to symptom relief in most people with mild to moderate endometriosis, but it’s not always effective, and there may be a need for further surgical procedures over time. 

In severe cases, a hysterectomy (removal of the uterus, fallopian tubes, and sometimes the ovaries) might be considered after other treatment options have been exhausted. Hysterectomy has lower retreatment rates than other surgeries, but is considered a radical treatment option because it causes menopause in women of reproductive age.

6. When is surgery usually recommended for endometriosis?

Surgery for endometriosis is usually recommended when less invasive treatments (such as pain medication or hormonal therapy) haven’t provided relief from symptoms, or when endometriosis is causing damage to the pelvic organs or affecting fertility. The decision to have surgery should be made in consultation with a healthcare provider who is experienced in treating endometriosis. 

7. What are some potential long-term effects of endometriosis?

Endometriosis is a progressive condition, meaning it can get worse over time. Potential long-term effects of endometriosis include chronic pain and infertility. Some research has shown a link between endometriosis and an increased risk of coronary heart disease, but more research is needed. Early management can help slow progression, reduce complications, and keep symptoms under control. 

8. What should people know about the impact of endometriosis on fertility and reproductive health? 

Endometriosis can affect fertility in several ways, including:

• Disrupting egg development and ovulation can prevent eggs from maturing or being released on schedule

• Interfering with fertilization and embryo implantation due to changes in the uterine or pelvic environment

• Causing adhesions, scarring, or physical changes in the reproductive organs that make it harder for eggs to travel or for fertilization to occur

• Creating a chronic inflammatory environment that may affect ovarian reserve, egg quality, sperm movement, and uterine receptivity

It’s worth noting that up to 50% of people diagnosed with infertility are also found to have endometriosis.

9. Does endometriosis run in families, and is there a genetic component?

Yes. Endometriosis has a genetic component and can run in families. It’s a complex condition, and while we don’t fully understand all the ways it develops, we do know that genetics plays a role. 

Research shows that having a close family member, such as a parent or sibling, with endometriosis increases the chances of developing it yourself by 7-10 times. 

There’s also evidence that environmental and lifestyle factors can interact with genetic predispositions, influencing whether and how the condition shows up. This area of research is called epigenetics. 

10. If endometriosis runs in your family, what steps can you take to reduce your risk of developing it?

There are some factors linked to a lower risk of endometriosis. For instance:

• Fewer menstrual cycles over a lifetime, which can occur because of hormonal contraception, pregnancy, or later onset of menstruation. 

• Regular physical activity may reduce the likelihood of developing endometriosis and can help manage symptoms like pain for those who already have it. 

It’s important to note that endometriosis isn’t contagious and cannot be prevented in the traditional sense. But people who are genetically predisposed may have hormonal and inflammatory patterns that contribute to the development of endometrial-like tissue outside the uterus. 

11. What contributes to or increases your risk for endometriosis? 

Here’s a breakdown of some known or suspected risk factors for endometriosis:

• Hormonal imbalances: Endometriosis is influenced by hormones, particularly estrogen. In people with endometriosis, there may be increased sensitivity to estrogen and a resistance to progesterone, which can make symptoms worse. External hormone exposure doesn’t cause endometriosis, but hormones do play a key role in how the condition behaves. 

• Immune system differences: People with endometriosis often have variations in how their immune systems respond. This can lead to more inflammation and pain, and may also allow endometrial-like cells to implant and grow outside the uterus. 

• Environmental exposure to toxins: Exposure to environmental pollutants, like dioxins found in some pesticides, has been linked to a higher risk of developing endometriosis. Lifestyle factors like smoking and alcohol use may also contribute by affecting immune and hormone function. 

• Menstrual patterns: Having more menstrual cycles over a lifetime is associated with an increased risk of endometriosis. Early menstruation, not having children, or not using hormonal birth control are all factors that increase the number of cycles and the risk of developing endometriosis.

• Body weight: A higher BMI is associated with a slightly lower risk of developing endometriosis. However, the reasons for this aren’t fully understood, and changing body weight isn't recommended to prevent endometriosis. 

• Inflammation: Endometriosis is fundamentally linked to inflammation. The condition involves an ongoing, dysregulated inflammatory response that can worsen symptoms and affect surrounding tissue. 

Key takeaways

Endometriosis can cause pain, affect fertility, and significantly impact daily life. Early awareness and consistent symptom tracking can make a real difference, especially when combined with care from experienced healthcare providers who can support timely diagnosis and tailored treatment.

Managing endometriosis often involves a mix of lifestyle changes, medication, and sometimes surgery. Tools like Clue help turn your data into a powerful tool for navigating your cycle, helping you better understand your body and recognize patterns that support informed conversations with healthcare providers. Understanding risk factors and symptoms empowers people to take control of their reproductive health.