The different types of endometriosis

While endometriosis, this endometrial disease that affects 10% of women in France, is starting to be discussed more and more, it is less well known that it is divided into three different types depending on where the pathological development of the endometrium creates adhesions in the body of those affected. Superficial, ovarian or deep endometriosis : what are the differences between these three forms of endometriosis , can they be combined and how can they be treated? In today's article, we take the time to look at the three types of endometriosis that exist and can affect you. 

First of all, what is endometriosis?

Before introducing you to the three forms of endometriosis, let's start at the beginning: what is endometriosis?

What is endometriosis?

Endometriosis is a disease of the endometrium . The endometrium is the lining of the uterine wall that develops during the luteal phase of the menstrual cycle to accommodate the potential embryo and is expelled during menstruation. However, in cases of endometriosis, the endometrium spreads beyond the uterus, into the fallopian tubes, outside the uterus, into the small intestine and even, in the deepest and most serious cases, into the brain. The endometrium cannot then be expelled and creates adhesions that cause all sorts of inconveniences, including severe pain, particularly during menstrual cycles .

What are the causes of endometriosis?

The causes of endometriosis are still poorly understood. For a long time, endometriosis was associated with multifactorial causes, particularly genetic ones, but this approach has been called into question since 2023 and discoveries that tend to link endometriosis to a bacterial infection. Here is a summary of the proposed causes of endometriosis based on current knowledge:

• Retrograde menstruation theory: This theory posits that fragments of endometrial tissue detach from the uterus during menstruation and travel through the fallopian tubes to other parts of the pelvic cavity (fallopian tubes, ovaries, bladder, rectum), where they implant and grow, causing endometriosis;
• Genetic factors: Women who have women with endometriosis in their close family (sister, mother, grandmother) are at greater risk of contracting the disease. This suggests that there is a genetic component to the development of endometriosis.
• Hormonal factors: Hormones, particularly estrogen, play an important role in the growth and development of endometriosis. Therefore, researchers believe that hormonal imbalances or increased sensitivity to hormones may contribute to the development of the disease.
• Immune system dysfunction: It has been suggested that abnormalities in the immune system may allow endometrial cells to spread and implant in other parts of the pelvic cavity, instead of being eliminated normally by the immune system.
• Environmental factors: Certain environmental factors, such as exposure to toxic chemicals and endocrine disruptors, may also play a role in the development of endometriosis, although research on this is still limited.
• Bacterial infection: In 2023, researchers at Nagoya University in Japan demonstrated that an infection caused by a bacterium of the genus Fusobacterium is involved in this hormone-dependent disease, the causes of which are genetic and environmental. This hypothesis had never been considered before.

💡 While hormonal changes related to pregnancy can impact endometriosis, no research has yet shown that pregnancy and endometriosis are linked.

Common symptoms of endometriosis

Endometriosis affects approximately 1 in 10 women, but these figures remain unclear because diagnosis can be long and complicated. This is partly because the disease remains poorly studied, partly because it is still common to consider pain during menstruation normal, and partly because the symptoms are very diverse and not specific to endometriosis:

• Chronic lower abdominal pain: This is one of the most common symptoms. The pain can be very severe and increase sharply during menstruation;
• Pain during intercourse: Some women experience pain during or after intercourse. This may be due to adhesions caused by poorly expelled endometrial tissue.
• Heavy or irregular menstrual bleeding: Menstrual bleeding that is heavier and/or longer than average (usually between 2 and 5 days) may be a symptom of endometriosis;
• Bowel or urinary pain during menstruation: Abdominal pain, digestive problems or pain when urinating can be signs of endometriosis during menstruation;
• Chronic fatigue: Fatigue can be a symptom associated with endometriosis, likely due to pain and sleep disturbances.

Can endometriosis be cured?

At the time of writing, there is no cure for endometriosis. Interestingly, however, it diminishes significantly during menopause, when estrogen levels in the body drop sharply and stop fluctuating.

Current treatments consist of:

1. Slowing down the occurrence of menstrual cycles, particularly by giving the pill continuously, so as to slow down the progression of the disease ;
2. Perform surgery to remove endometriosis foci in the most severe cases.

There are, however, reasons for optimism: since the disease became more widely known about ten years ago, research (and discoveries) on endometriosis have intensified. While just a few years ago, the disease was not considered—even by gynecologists who went so far as to deny its existence—it is now better known. Recent advances point towards better management of the disease.

The three types of endometriosis

There are three types of endometriosis, which are distinguished from each other depending on the organs affected by the development and clumping of the endometrium.

Superficial endometriosis

Superficial endometriosis is the most common form of endometriosis —about 70% of endometriosis cases. In this form, lesions develop on the peritoneum, the membrane that lines the abdominal cavity and covers the abdominal organs. This form of endometriosis is particularly difficult to detect with imaging (ultrasound and MRI) and may require laparoscopy, a medical examination that involves surgically removing a small piece of the uterine wall for observation.

⚠️ Superficial endometriosis is called “superficial” as opposed to “deep” (another form of endometriosis) and not in relation to the pain it causes: superficial endometriosis can be particularly painful, just as painful as deep endometriosis.

Ovarian endometriosis

In the case of ovarian endometriosis , endometriotic clumps are found on the ovaries, forming cysts called endometriomas or endometriotic ovarian cysts. They can occur on one or both ovaries.

Ovarian endometriosis is very often associated with the third form of endometriosis: deep endometriosis (60 to 70% of women with ovarian endometriosis also have deep endometriosis).

Deep endometriosis

The third form of endometriosis is called deep pelvic endometriosis, or subperitoneal endometriosis or deep infiltrating endometriosis. It is characterized by lesions located more than 5 mm from the surface of the peritoneum . The affected organs can be: the ovaries, the vagina, the uterosacral ligaments (50% of cases), the intestine (20 to 25% of cases), the rectum, the colon, the bladder (10% of cases) and the ureters (3% of cases).

Other organs, even further away, can be affected by the disease. This is referred to as extrapelvic involvement. Lesions in the brain were even found in one patient!

Superficial, ovarian or deep endometriosis: which is more serious?

For a time, people used to talk about "stages of endometriosis" based on the organs affected by the disease (there were four stages). This term has since become obsolete, and we now prefer to talk about forms or types of endometriosis. This is mainly for one reason: these forms do not designate levels of pain or severity, but rather different forms of the disease. Thus, deep endometriosis is not more serious or more painful than superficial endometriosis.

The type of endometriosis is primarily useful for diagnosing and managing your condition. This is especially true when it comes to surgery to remove endometrial clumps (even if this affects a minority of women: the lesions must be precisely located).

How do I know if I have endometriosis?

Despite its still low recognition, endometriosis is a common condition that affects 10% of women. However, it suffers from a significant delay/lack of diagnosis: it is estimated that on average, it takes seven years to be diagnosed with endometriosis after the first symptoms appear.

Know how to recognize the symptoms and warning signs

Endometriosis can appear as early as puberty, at the onset of menstruation, or later. It is associated with the fertile period of menstruating people: it most often resolves at menopause.

The three main symptoms that should alert you are:

1. Pelvic pain: Constant lower abdominal pain that intensifies around ovulation and menstruation is the most common symptom of endometriosis (especially superficial endometriosis);
2. Heavy or irregular menstrual bleeding: Heavy and/or long-lasting menstrual bleeding (lasting more than 5 days) is also a symptom of endometriosis;
3. Pain and difficulties related to transit and urination: disrupted intestinal transit and pain associated with urination, particularly during menstruation, may be associated with endometriosis (and particularly deep endometriosis).

All of these signs may seem “normal” to you, and you might be reluctant to seek medical help for “so little.” After all, periods are painful for many of us, aren’t they?

The warning signs that should lead you to consult are:

• New pain during your period: If you experience more pain than usual during your period, it may mean there is a problem. This is especially true if several consecutive cycles become more painful;
• Pain that stops you from living: You've always had pain during your period, but now it's stopping you from living normally? This isn't normal;
• Difficulty getting pregnant: In some cases, endometriosis can lead to infertility. If you're having trouble getting pregnant naturally, it's normal to be concerned.

Consult a healthcare professional

To get diagnosed—or at least to understand and treat the pain you're experiencing—the first step in your medical journey is to talk to a healthcare professional.

Your general practitioner (GP) and gynecologist are the two professionals who can answer your questions about your pain and endometriosis. They will listen to you and, depending on your symptoms, perform a clinical examination and prescribe specific tests.

Be aware that there are also gynecologists who specialize in the diagnosis and treatment of endometriosis. It may be worth consulting them, but their schedule is often very full, and positions are limited!

Undergo clinical examinations

There are several clinical tests that can help diagnose endometriosis. However, these tests are not always effective, and it is often necessary to perform several tests before finding the cause of your pain.

• History and physical exam: Your doctor will often begin by discussing your medical history and symptoms. They will perform a physical exam, which may include a pelvic exam to look for any abnormalities, such as painful lumps that may indicate the presence of endometriosis.
• Pelvic ultrasound: Pelvic ultrasound is often the first test ordered to detect endometriosis. It can help distinguish abnormalities that may affect the uterus and ovaries, including ovarian cysts.
• Pelvic MRI: Pelvic MRI is often used to detect and evaluate endometriosis, especially in cases where ultrasound or other imaging methods do not provide sufficient information.
• Pelvic scan: Less used than ultrasound and MRI, this examination may be prescribed to obtain different information from the latter in the event of suspected endometriosis.
• Laparoscopy: If medical imaging tests do not provide enough information (this is often the case in superficial endometriosis), a laparoscopy may be considered. This test is surgical: it involves incising and removing a very small part of the wall of the organs suspected of being affected for observation. This is the test that currently allows the most accurate diagnosis of endometriosis.
• Colonoscopy: This last examination may be considered in the case of suspected deep endometriosis. It involves visualizing the interior of the colon and intestine using a small camera, during general anesthesia.

🖐️ To be continued! Just recently, a saliva test capable of detecting endometriosis was developed by the company Ziwig. The French National Authority for Health is currently conducting tests to evaluate its effectiveness, which could lead to its reimbursement by social security and mutual insurance companies.

What treatments?

Currently, there is no cure for endometriosis, regardless of its form. However, there are three solutions to limit the impact and symptoms of the disease: treating the symptoms of the disease, slowing the disease through hormonal treatments, and surgery to reduce cysts and adhesions.

Treatments to alleviate symptoms

The first solutions that exist to treat endometriosis are solutions aimed at treating the different symptoms of endometriosis:

• Pain relief treatments to limit pelvic and abdominal pain linked to the progression of the disease and to attacks linked to menstruation;
• Treatments to regulate intestinal transit and facilitate periods surrounding menstruation;
• Treatment to facilitate urination when the bladder or ureters are affected by deep endometriosis.

Treatments to slow down the disease

At the same time, doctors most often try to slow the progression of the disease to prevent it from affecting you too severely or from worsening (developing more endometriosis foci). The solution for this is often hormonal treatment: this involves taking the pill continuously or a hormonal IUD. These help limit hormonal fluctuations in your body and thus limit attacks.

Surgery to treat cysts and adhesions

Finally, in a very small minority, a treatment for endometriosis can be surgery. This involves removing the endometriosis foci that cause pain or prevent ovulation (particularly ovarian cysts in the case of ovarian endometriosis).

What natural solutions can relieve pain?

If you have endometriosis, you may be uncomfortable taking daily hormones and regular pain medication to manage your endometriosis symptoms. We completely understand that you may be looking for alternative, more natural solutions; below are some natural ways to relieve your pain .

Disclaimer: Consult a doctor before stopping treatment

Whatever your reasons, don't decide to stop medical treatment (hormonal, painkillers) without first speaking to a healthcare professional. You remain in control of your treatment and your choices, but they must be informed: before making any decision, talk to the professional(s) who are treating you and don't hesitate to seek several opinions.

This is also the case if you want to adopt another type of treatment to limit your pain (CBD, herbal medicine): ask a doctor what he thinks and if these solutions do not conflict with the medications you are taking. It is indeed possible that there are interactions!

Natural solutions that exist to relieve you

• Adopting a healthy lifestyle: A varied diet, regular hydration, good sleep and limiting excesses (alcohol, tobacco or caffeine) can alleviate pain linked to endometriosis.
• Applying heat: Heat is a muscle relaxant. It can relieve uterine contractions, which are a major cause of menstrual pain. Taking a warm bath and applying a hot water bottle are two helpful solutions!
• Exercise: Exercising when your period pain is severe isn't easy, but if you can manage it, the endorphins your body releases can help relieve your pain.
• Abdominal Massage: Massaging your abdomen can help soothe your pain. This creates warmth and encourages you to focus on your sensations and breathe.

• Relaxation practices: Yoga, meditation, and sophrology are practices that help reduce period pain. Try the practices that work for you and reduce your pain.
• Electrostimulation: Electrostimulation involves passing tiny electrical currents through your body. This stops the pain message sent from your nerves to your brain.

• Masturbation / Sexual relations / Orgasm: Masturbating during your period can help relieve pain. This is also true for sexual activity: making love releases hormones that help alleviate pain. If penetration isn't an option for you, clitoral stimulation can also work. And if you're not planning on having sex, don't force yourself! It's just one solution among others. ;)
• Cannabidiol (known as CBD) is a molecule derived from hemp, particularly hemp flowers. Its effects on menstrual pain are currently being studied and appear to be beneficial. You can consume it in oil form for immediate results or as a treatment, in oil or herbal tea, to supplement your body over the long term. Consult a doctor before combining it with other medications if you are undergoing treatment.

• Finally, several plants, consumed as herbal teas or dietary supplements, can support your body in limiting menstrual pain and disorders caused by endometriosis. Be careful, however: herbal treatment is not harmless. Consult a doctor before using it, especially if you are already undergoing treatment.