How to Talk About: Endometriosis

In this article, we’ll answer the questions:

• What is endometriosis?
• What causes endometriosis?
• How many people have endometriosis?
• Why is endometriosis often misdiagnosed?
• What are the benefits of a diagnosis?
• Are there any conventional endometriosis therapies to be aware of?
• How does endometriosis affect fertility?
• What strategies can I use to talk to my healthcare provider about endometriosis?
• Where can I find support and resources for endometriosis?

Why it matters

Despite its prevalence, endometriosis is often misdiagnosed or delayed for many years after symptoms and issues arise. The American Journal of Obstetrics and Gynecology notes an average delay of 4-11 years from the onset of symptoms to diagnosis and surgical intervention. Symptoms of endometriosis overlap with other conditions, such as IBS. The gold standard for diagnosis is based on an invasive surgical procedure called a laparoscopy (1) (2) (3). 

Endometriosis is misdiagnosed for many reasons (4), including:

• The high cultural tolerance and normalization of women’s pain and suffering. This mainly concerns pain and discomfort associated with menstrual periods, which healthcare practitioners often normalize since it is so widespread across the general public
• A general lack of awareness and education about endometriosis and its symptoms among the public and healthcare practitioners 
• Its overlap with conditions like IBS and inflammatory bowel disease (IBD)
• The lack of resources and research invested in studies looking specifically into women’s health

The complexity of endometriosis is one of the many reasons a diagnosis can be so important. For one, it may help alleviate some of the anxiety and depression that can often come from having symptoms without a known cause. Moreover, a diagnosis, according to experts in the field, “reassures some that they don’t have cancer, gives others language with which to discuss their symptoms, and helps determine strategies to manage their symptoms (5)”. 

If you’ve been diagnosed with endometriosis or suspect you might have it, there are three things to consider.

1. Self-educate

Educate yourself on what works best for you. Then, advocate for yourself. You are the expert on your body.

2. Communicate 

If you suspect you might have endometriosis, talk to your doctor about your symptoms. They might do a pelvic exam to check for cysts or scars or an imaging test like an ultrasound. 

If the response from your care team about testing or treatment doesn’t feel right, look for second opinions. Be sure to ask for a copy of all your records, so you have all the pieces to the puzzle for each practitioner you see.

3. Find support

Friends, family, and others with endometriosis can be your biggest champions. Consider joining an endometriosis support group where you can ask questions, share stories, and make connections. Other great resources can be found in the US at The Endometriosis Foundation of America and in Canada at The Endometriosis Network.

Let’s start with education.

Endometriosis is an estrogen-dependent disease that can significantly impact a person’s quality of life. The inflammation and scar tissue growth associated with endometriosis can be painful (e.g., pelvic pain and painful bowel movements, urination, and sexual intercourse). It can also impact menstrual cycles, energy levels, and digestive health (6) (7) (8).

While the cause remains largely unknown, a 2017 review of studies looking into the origins of endometriosis hypothesizes it’s based on three main theories (9): 

• Retrograde menstruation: When your period flows up through your fallopian tubes rather than exiting via your vagina
• Coelomic metaplasia: When endometriosis develops directly on the affected regions from cells already found in these areas (this can occur in your ovaries, bladder, bowel, abdomen, etc.)
• Induction: When unknown substances are released from the layer of tissue that lines the uterus, leading to the growth of endometriotic tissue

Genetics and exposure to environmental toxins can also play a role in developing endometriosis. 

Now that you know more about endometriosis and its causes, let's explore treatment options.

There isn't a cure for endometriosis, but there are strategies and tools that can relieve symptoms and improve your overall quality of life. Let’s examine a handful of the most research-backed options, including non-pharmaceutical and non-surgical solutions. 

Hormonal Treatments

The oral contraceptive pill, or gonadotropin-releasing hormone (GnRH) agonists, are often used to treat pain and other menstrual symptoms associated with endometriosis by blocking the menstrual cycle.

Surgery

• Excision surgery is the current gold standard for endometriosis management and involves cutting away all of the visible endometriotic tissue that is growing where it shouldn’t be
• Endometrial ablation uses minor burns, freezing, or high-energy radio frequencies to help manage heavy blood loss and pain 

Take the time to research your potential surgeon to find someone who is not only skilled in this type of procedure but someone with whom you feel comfortable.

A 2019 review of studies on clinical surgical outcomes in patients with endometriosis highlighted the importance of choosing the right specialist to perform your surgery to avoid postoperative and recurrent pain or adverse events (10). 

Diet 

Food can play a vital role in reducing inflammation and managing pain.

• Focus on colorful, whole foods with antioxidant powers. Examples include curcumin (turmeric), quercetin (cherry tomatoes), or resveratrol (blueberries)  (11)
• Increase omega-3 fatty acids (combined EPA and DHA). Daily intake between 1000-2000mg can be protective (12)
• Optimize gut health and healthy estrogen levels with fiber and fermented foods when possible
• Support detoxification with sulfur-rich vegetables like broccoli and cauliflower

Lifestyle 

• Prioritize rest and stress management
• Prioritizing sleep and managing mental stress can help to reduce inflammation associated with painful symptoms of endometriosis. Mindfulness practices can serve as a useful technique (13)
• Reduce environmental exposure to chemicals like BPA, phthalates, and other endocrine-disrupting chemicals 
• These chemicals are known to mimic estrogen which worsens not only the inflammation and scar tissue growth associated with endometriosis but also exacerbates symptoms.

Pain Management

For many suffering from endometriosis, pain is the most debilitating aspect of this condition. NSAIDs are often recommended for pain management, but there are other therapeutic approaches worth considering, too. 

NSAIDs - short for non-steroidal anti-inflammatory drugs - are often used as a first point of treatment for women experiencing pain associated with endometriosis because they are easily accessible and have very few short-term side effects (14). However, when taken regularly over long periods of time, NSAIDs can be harmful to the stomach lining and deplete key fertility nutrients like folate, iron, and vitamin C.

However, if you’re looking to go a more holistic route, consider consulting with an exercise and pelvic physiotherapist. These specialists can help you learn how to strengthen and relax your pelvic floor muscles to help ease some of your symptoms. Research around acupuncture is also promising. Although we don’t know the exact reasons acupuncture yields beneficial results, it has been shown to reduce pain for many women (15).

Communicate

We all want to feel heard and understood when it comes to discussions with our healthcare providers. Look for someone who is going to take the time to answer questions. There is nothing worse than feeling rushed or uncomfortable when discussing very personal medical issues! Remember, second opinions are 100% fair to consider if you do not feel heard or aren’t happy with your treatment plan. Reach out to those in your community for support and recommendations, and keep a record of questions to ask your provider as they arise.

A note from our fertility team:

Taking a surgical approach is 100% your decision. Don't let anyone force or judge you. You know what’s best for YOU. If surgery is on the table, be sure to consider these questions with your healthcare team: 

• Is surgery necessary at this point in time? (Is it only being performed to confirm a diagnosis? Will having an official diagnosis change how you/your team manage symptoms? Do the pros outweigh the cons/risks?)
• If I opt not to have surgery, what other options are available?
• How many times have you (the healthcare provider) successfully completed this surgery? 
• Will you be doing an excision or ablation? (Why have they selected one particular option over the other?)
• What post-op care is available? (Is there a nurse I can call if I have any questions? What are my options for post-op appointments with the specialist to discuss how my surgery went? How will I care for my wounds? Will I be given the supplies I need?)
• What should I expect post-op, and what is the expected recovery time?
• What is the cost?
• What are the benefits and risks?
• What should I avoid immediately after surgery? (Are there medications or supplements to avoid? What about baths and tampons/insertable menstrual sanitary product use?)

There is a human element to balancing your trust in your healthcare provider with your concerns, but ultimately, know that your doctor's sole mission is to care for you and your potential family.

Find support 

There are myriad tools, resources, and education available on managing endometriosis in a holistic, functional way that you can dive into.

• Endometriosis Australia’s ‘Living with Endo’ podcast
• The Cycle - endometriosis podcast
• The global platform - endometriosis.org
• The endometriosis network Canada website
• The endometriosis foundation of America website