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Demystifying the Journey: Understanding an Endo Diagnosis

Medically reviewed by: Melissa A. Delgado, MD, FACOG

Melissa A. Delgado, MD, FACOG is the founder and owner of The Chronic Pelvic Pain Center of Northern Virginia. Dr. Delgado is an experienced, board-certified OB/GYN and has spent the past 10 years dedicating her time to understanding complex and persistent pelvic pain.

A woman sitting up in bed, hunched over with her hand on her stomach in pain
Image Source: Andrea Piacquadio via Pexels

Introduction to endometriosis

Endometriosis (or “endo”) is a chronic and often debilitating condition that affects millions of women worldwide. It occurs when endometrial-like tissue, or the tissue that usually lines the uterus, grows outside the uterus. This can cause severe pain, especially during menstruation, as well as other undesirable symptoms.

Unfortunately, endometriosis is often misdiagnosed or overlooked. As a result, many women suffer in silence for years before receiving the proper care they need.

Understanding endometriosis and its complex nature is an essential first step in receiving an accurate endo diagnosis. The better you understand this condition, the more prepared you’ll be to discuss it with your doctor and work with them to identify the right treatment approach for you.

Keep reading to learn more about endometriosis, including its common signs and symptoms and how you can begin your journey to healing.

Common symptoms of endometriosis

Endometriosis can manifest itself in a variety of ways, making it difficult to pinpoint an endo diagnosis based on symptoms alone.

However, there are some common signs that many women with endometriosis experience:

  • Painful periods (dysmenorrhea): One of the most common symptoms of endometriosis is severe menstrual cramps that may worsen over time. The pain can be so severe that it might interfere with daily activities, such as work or school.

  • Chronic pelvic pain (CPP): Some women with endometriosis experience ongoing pain in their pelvic region, even when they are not menstruating.

  • Painful sex (dyspareunia): Endometriosis can cause discomfort or pain during and after sexual intercourse.

  • Heavy menstrual bleeding: Women with endometriosis may have longer and heavier periods than what may be considered typical.

  • Infertility: Endometriosis has been identified as one of the leading causes of infertility, as it can damage the ovaries and fallopian tubes.

Note that the severity of endo symptoms doesn’t necessarily correlate with the extent of the condition. Some women with mild endometriosis may experience severe pain, while others with more advanced stages may have minimal discomfort.

How do you test for endometriosis?

If you believe you might be experiencing endometriosis symptoms, it's essential to seek advice from a medical expert. A gynecologist or endo specialist can guide you in determining the appropriate steps for examination and diagnosis.

While there isn't a single conclusive test for endometriosis, various techniques can be used to diagnose it. This may include:

  • Pelvic examination: Your healthcare provider may perform a manual pelvic exam to feel for any abnormalities, such as cysts or scars, that may suggest endometriosis.

  • Ultrasound imaging: This imaging method, which is gentle and non-invasive, uses sound waves to create pictures of your reproductive organs. This allows your healthcare provider to look for any noticeable signs of endometriosis.

  • Magnetic resonance imaging (MRI): An MRI can provide a more detailed view of your reproductive organs, which can help your healthcare provider identify endometriosis lesions or other abnormalities.

Laparoscopy: This minimally invasive surgical procedure is considered the gold standard for diagnosing endometriosis. In a laparoscopy, a surgeon creates a tiny cut in your belly and inserts a slim, illuminated tube called a laparoscope. They'll then examine your pelvic organs and search for any evidence of endometriosis.

The process of receiving an endo diagnosis

Receiving an endo diagnosis can be a long and challenging process. Many women go through multiple healthcare providers, misdiagnoses, and years of suffering before finally receiving the correct diagnosis.

That’s why it's so important to be persistent and proactive in your healthcare journey, as early diagnosis and intervention can greatly improve your quality of life.

To begin the process of receiving an endo diagnosis, start by discussing your symptoms and concerns with your primary care physician or gynecologist. They may perform an initial evaluation and refer you to a specialist, such as a pelvic pain specialist, for further testing and evaluation.

Make sure to be upfront and clear about your symptoms and give your healthcare provider a thorough medical history. This info will help them determine the best way to test and treat you.

Remember, you might have to go through a few different tests before getting a clear-cut diagnosis.

The 4 types of endometriosis

Endometriosis is often categorized into four distinct types based on its extent and severity:

  • Minimal: Characterized by isolated implants and minimal scarring or adhesions.

  • Mild: Involves more extensive implants and slightly more scarring or adhesions.

  • Moderate: Multiple implants and more severe scarring or adhesions. Ovarian endometriomas, or "chocolate cysts," may also be present.

  • Severe: Characterized by numerous implants, extensive scarring or adhesions, and large endometriomas or cysts; may also involve other organs, like the bladder or bowel.

It's important to note that the stage of endometriosis does not necessarily correlate with the severity of symptoms. Some women with Stage I endometriosis may experience debilitating pain, while others with Stage IV endometriosis may have minimal discomfort.

Treatment options for endometriosis

Right now, there isn't a cure for endometriosis. However, there are various treatments to help manage endo symptoms:

  • Pain medications: Over-the-counter (OTC) pain relievers, like ibuprofen or naproxen, may help alleviate mild to moderate pain associated with endometriosis. Acupuncture is also a popular alternative.

  • Conventional management: Typical treatments, like birth control pills can help regulate your hormones and reduce the growth of endometrial tissue outside of the uterus.

  • Robotic surgery: In some cases, surgery could be required to remove endometrial implants, scar tissue, or cysts. Laparoscopic surgery is the most common surgical approach, but minimally invasive robotic surgery often leads to even better outcomes.

  • Fertility treatments: If endometriosis is causing infertility, your healthcare provider may recommend fertility treatments, such as in vitro fertilization (IVF), to help you conceive.

It's key to team up with your healthcare crew to figure out the best treatment plan for your specific case. You may need to try several treatments or mix different therapies to discover the best way to manage your symptoms.

Coping with an endometriosis diagnosis

Receiving an endo diagnosis can be a difficult and trying experience. It's normal to feel a range of expected and unexpected emotions, such as sadness, anger, frustration, or relief.

Make sure to take time to process it and find healthy ways to deal with the emotions that come with living with endometriosis.

Seek support from friends, family, or a group, and explore online resources for endometriosis. Practice self-care with relaxation, exercise, a healthy diet, and sleep. Prioritize your needs and adjust your work or social life as needed.

Stay informed about endometriosis to make educated decisions about your healthcare. Keep up with research and treatments, and don't hesitate to ask questions or seek a second opinion.

Plus, there are online resources and communities for women with endometriosis, like support groups, forums, and organizations that advocate for you.

Endometriosis resources & support

Living with endometriosis can feel isolating and overwhelming, but it doesn’t have to be. There are many resources that can help you navigate your journey, both in person and online:

  • Endometriosis Association: This nonprofit organization provides education, support, and advocacy for women with endometriosis. They offer a variety of resources, including a helpline, support groups, and educational materials.

  • EndoFound: This organization is dedicated to improving the lives of women with endometriosis through research, education, and advocacy. They offer a range of resources, including support groups, educational webinars, and a patient registry.

  • MyEndometriosisTeam: This online community connects women living with endometriosis. Members can share their experiences, ask questions, and find support from others with similar experiences.

  • Pelvic Pain Support Network: This UK-based organization provides support and resources for people with pelvic pain, including endometriosis. They offer a helpline, online support groups, and educational resources.

This is by no means an exhaustive list, but it’s a great place to start. And remember: always reach out for help when you need it.

Find your path to healing

All too often, women spend years looking for answers and seeking relief from their endo symptoms. Even after receiving the right diagnosis, some women continue to struggle with seemingly unmanageable symptoms.

You shouldn’t have to accept living with endo pain without relief.

Dr. Delgao specializes in treating endometriosis, as well as its co-occurring conditions and symptoms. She combines her expertise in robotic surgery and traditional treatments with holistic therapies, helping to provide lasting relief from pain.

Contact Dr. Delgado today to start on your journey to healing from endo.


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