What is Endometriosis? What They Don’t Tell You

Endometriosis with Personal experience

Endometriosis (“Endo”)is a chronic inflammatory disorder. And, it causes women to experience pain on different levels on and before their menstrual cycle. It is important to note that endometriosis is “endometrial-like” the lining of the uterus (endometrium). This tissue can grow both inside and outside of the uterus and cause pain once inflamed.

Who is affected by endo?

This disorder affects over 176 million women. However, this number largely does not count women who have often been overlooked or misdiagnosed due to medical books claiming it to be a “white women’s disorder” for years.

Women of color are often told they have heavy periods, PCOS, and other disorders. And, this is before doctors take the necessary steps to diagnose Endo properly. This is why it is important to know what Endo is and how to get tested.

My Personal Endometriosis Journey: As a black woman, I visited over 6 different OBGYN’s before finding a doctor who took my pain seriously. Getting diagnosed with endometriosis took over 12 years from first complaining about severe pain. At the time, I only knew that I had debilitating pain. And, I was only offered birth control to manage my pain. Getting a laparoscopy to explore if endo was never presented to me by any of the OBYGNs. It wasn’t until I visited a specialist that I was offered the idea to dig deeper.

Kyla Canzater

Endo is not cancer. Yet, it shares some similar traits to cancer.

In this post, we going to break down what endometriosis is, the different types and stages, as well as the different treatments.

The Endometriosis Tissue

What endometrial-like tissue found with the endometriosis disorder?

In endo, the endometrial-like tissue refers to the tissue outside the uterus in areas where it shouldn’t be. This tissue resembles the endometrium, the lining of the uterus, both structurally and functionally. Although additional research would be helpful, it is important to note that there are foods and substances that can act like endometrial tissue. You can find that list here.

In women with endo, this ectopic (misplaced) tissue can be in various locations within the pelvic cavity, such as on the ovaries, fallopian tubes, outer surface of the uterus, the pelvic lining (peritoneum), or even in distant areas like the intestines or bladder. Although considered rare, this tissue can be in the lungs and brain. This is Thoracic endometriosis.

More and more women are becoming vocal about their rare endo diagnosis to normalize the conversation. If you are looking to learn more, Jenneh Rishe is a great person to follow. Her experience with Diaphragmatic endometriosis, which is a form of Thoracic endometriosis, has been shared on national news and in the Below the Belt documentary.

What Endometriosis Feels Like

Professor Guillebaud at the University College London described cramping pain as “almost as bad as having a heart attack”. And this is a reality of a lot of women with Endometriosis. Endo feels differently for every individual, and the pain can vary during different stages of the cycle, trigged by stress or by certain foods and environmental factors.

Personally, I had endometriosis lesion around my appendix and experienced symptoms of appendicitis during every period.

Other women have noted having brain fog, headaches, backaches, and chest pain as a result of an Endo Flare. This disorder looks and feels different for every person. And, the pain levels can change for one person as they get older, change environments, stress levels, eating habits, etc.

Types of Endometriosis

What are other types of endometriosis?

Thoracic Endometriosis:

Thoracic endo refers to the presence of endometrial-like tissue in the chest, particularly in the pleura (the lining of the lungs), diaphragm, or other thoracic structures. It can lead to symptoms such as chest pain, shortness of breath, coughing up blood during menstruation, or pneumothorax (collapsed lung). This type of endo is considered rare but not uncommon.

Abdominal Wall Endometriosis:

Endo can also occur in the abdominal wall, typically at the site of previous surgical incisions, such as a cesarean section or hysterectomy scar. Women may experience pain, a lump, or swelling in the affected area.

Umbilical Endometriosis:

Umbilical endo, also known as “Sister Mary Joseph nodule,” involves the presence of endometrial-like tissue in the umbilicus (belly button). It can manifest as a tender nodule or lump in the umbilical region and is often associated with cyclic pain or bleeding.

Extragenital Endometriosis:

This term encompasses endo in various rare locations outside the pelvic region. It can involve the gastrointestinal tract (e.g., intestines), urinary system (e.g., bladder), surgical scars, skin, or even distant sites like the lungs or brain. The presence of endo in these locations is exceedingly rare and usually occurs due to the spread of endometrial cells through blood or lymphatic vessels

Rectovaginal Endometriosis:

A specific form of endometriosis that affects the area between the rectum and the posterior wall of the vagina. It involves the presence of endometrial-like tissue in this region, causing various symptoms and potential complications.

Is there a cure for endo?

Currently, there is no cure. However, that doesn’t mean you have to live a life filled with pain. Several lifestyle changes and treatments can help limit the amount of pain you may experience with endo. There are targeted things you can do to relieve your pain based on where it is and how often it is occurring.

Stages of Endometriosis

There are 4 stages of Endo. And, those stages determine the levels of pain. Stage IV is the most severe level. However, it is the location of the Endo tissue that can cause symptoms like infertility to be at its’ worst.

The stages of endometriosis are commonly classified using the revised classification system. This is known as the American Society for Reproductive Medicine (ASRM) staging system. This system categorizes endo based on the disease’s location, extent, and severity. The stages range from Stage I (minimal) to Stage IV (severe).

Here is an overview of the different stages:

Stage I Endometriosis

Minimal Endometriosis is small isolated implants or lesions, typically shallow and superficial, on the peritoneum (the tissue lining the pelvic cavity) or other pelvic structures. There may be minimal adhesions or scar tissue.

Stage II Endometriosis

Mild Endometriosis involves mild, more extensive implants or lesions. These implants may be deeper and involve a larger area of the peritoneum. There may be slightly more adhesions or scar tissue compared to Stage I.

Stage III Endometriosis

Moderate Endometriosis indicates the presence of multiple deep implants or lesions throughout the peritoneum and pelvic structures. There may also be the involvement of one or both ovaries with endometriotic cysts (endometriomas). The adhesions and scar tissue may be more significant, leading to distortion or blockage of the fallopian tubes and potential fertility issues.

Stage IV Endometriosis

Severe Endometriosis represents severe endometriosis. It is characterized by extensive implants, lesions, and adhesions throughout the pelvis. In this stage, endo may be present on the ovaries, fallopian tubes, peritoneum, bladder, rectum, or other distant organs. Severe adhesions and scar tissue may cause significant distortion or blockage of pelvic structures, resulting in severe pain and infertility.

Things to Know About Endo Stages

It’s important to note that the staging system helps provide a general understanding of the extent and severity of endo. However, it does not always correlate with the severity of symptoms or the impact on fertility. Some individuals with minimal endo may experience severe pain, while others with severe endometriosis may be asymptomatic.

Discovering the staging of endometriosis happens during a laparoscopy. A healthcare professional visually assesses the pelvic structures and grades the disease based on its characteristics.

Causes of Endometriosis

The cause of Endo is unknown. However, there is a correlation between an Endo flare-up and stress, foods, and environment.

Symptoms of Endometriosis

Endo is bigger than just bad cramps. However, it looks different on every woman. This chronic pain can spread to all parts of the body. Endo can cause a variety of symptoms. When a flare-up occurs, it can include some of the following during, before or after a menstrual cycle:

• Painful menstrual cycle
• Vomiting
• Diaherra
• Fatigue
• Nausea
• Painful bowel movement
• Bleeding between cycles
• Migraines
• Muscle spams

Can Endometriosis Cause Nausea?

Nausea is a common side effect of endometriosis. You may feel it during your period, before your period begins and during ovulation. Make sure you are tracking this and other symptoms to share with your doctor if you believe you may have endometriosis.

Can Endometriosis Cause Constipation?

Constipation can be a symptom of endometriosis. You may experience it during a time leading up to your cycle, or during random time throughout the month after eating something that may cause an endo flare.

Treatments for Endo

Can Endometriosis Go Away?

Although, there is no cure for is disorder, there are several treatments.  Taking the right vitamins can help with pain, as well as manage stress levels and monitoring food, and tracking reactions.

For a more in-depth approach to managing pain, here are some helpful articles:

1. Natural Endometriosis Pain Relief
2. 12 Vitamins for Endo Pain
3. Endo Pantry Guide
4. Chlorophyll Water for Inflammation
5. How to Help with Endo Pain
6. Endometriosis Questions with Dr. Hawkins
7. Anti-Inflammatory Smoothies for Endometriosis

You can live a pain-free life with Endometriosis. It will take work listening to your body and creating a self-care plan that aligns with keeping you balanced on your journey.

Laparoscopy Surgery

How To Get A Endometriosis Test and Diagnosis

Ain individual must have a laparoscopy to determine if they have Endo. Even though, surgery is necessary to determine if you Endo, it is possible to see Endometriosis on an ultrasound by a trained eye.

A laparoscopy with will not cure your Endometriosis. However, it can be a necessary step to finding some relief and starting a pain free life with Endo.

Fertility & Endometriosis

Can You Get Pregnant with Endometriosis?

Endometriosis looks uniquely different for each woman, and so does their fertility journey. Having Endometriosis does not mean you can not get pregnant. And yes, you can get pregnant with Stage IV Endometriosis.

It is important to let your doctor know what your goals are around fertility. This will help you both come up with a plan and timeline. Including the next steps you need to take to protect your eggs and uterus health.

How Endometriosis Cause Infertility

Endometriosis could cause infertility in several different ways. It could be the location of a lesion that is not allow the full process to happen, or could be the severity of a lesion that has stopped your body from functioning in its normal manner. In either case, it is important to have the conversation with your doctor about your health and fertility goals before and after your laparoscopy.

Also, known that inflammation is a common cause of fertility. And knowing that Endometriosis is an inflammation disorder, managing your inflammation levels and dressing all of its root causes could help your fertility chances.

Endometriosis FAQ

1. Can you have endometriosis without a uterus?

Yes, endometriosis is “like” the endometrial lining. Which means it can go without the uterus being present. You will still need to create a lifestyle supporting a pain-free life with endo, even without a uterus.

2. Where is endometriosis located?

Although thought to be rare, there are cases of endometriosis in all body parts.

3. Can endometriosis cause cancer?

Even though, there is no research directly linking endo with endometrial cancer, there may be causation. However, individuals with endometriosis are at a higher risk. Other factors like obesity and metabolic syndrome may increase the risk of endometrial cancer.

4. Is endometriosis common in black women?

Even though studies say that white women are more likely to have endometriosis, black women were disproportionately not a part of the studies. That being said, any individual with a uterus having pain should consult their doctor about getting a test for endo. And can be equally affected by endometriosis as any other race. Some studies note racial medical disparities as the reason black women are not included in studies or receive the same amount of care.

Is Period Cramps and Period Pain Endometriosis?

When you first suspect endometriosis is the cause for your menstrual pain, you may be wondering if all period cramps are related to endometriosis. That isn’t always the case. However, it is important to keep your menstrual pain levels down while you wait for testing.

Here are things that have worked for me to stay pain-free: 50 Natural Remedies for Period Cramps.

More About Endometriosis

• 7 Life-Changing Facts About Endometriosis
• Endometriosis Questions with Dr. Hawkins
• How to Help Endometriosis Pain
• 5 Best Products for Endometriosis
• Natural Endometriosis Pain Relief Manual
• Refreshing Beet Juice for Endometriosis Pain