Symptoms of Endometriosis

The symptoms of endometriosis are numerous and can vary from one person to another. They do not necessarily need to occur together. Someone may experience only two symptoms and have endometriosis, just as someone else may experience five symptoms and also have the disease. In some cases, no symptoms are felt at all. The disease can then be considered “silent,” yet it may still cause complications, such as fertility issues.

Most symptoms are cyclical and tend to worsen during menstruation, as endometriosis lesions are influenced by hormonal changes. However, the extent of the disease is not necessarily proportional to the severity of the pain experienced by the patient. That said, deep endometriosis affecting areas close to nerves can lead to more severe and disabling pain, including neuropathic pain related to endometriosis.

Dysmenorrhea (painful periods):

This is the most common symptom that may indicate endometriosis. Periods are not supposed to be painful.

If the pain prevents you from carrying out your normal daily activities (going to school, exercising, running errands, etc.), and if it does not always improve with basic painkillers such as paracetamol or ibuprofen, you should ask yourself the following question:

“Do my periods disrupt the course of my day?”



If the answer is yes, endometriosis should be suspected.

The pain is usually cramp-like or spasmodic, often described as sharp or stabbing pain in the lower abdomen. It typically begins one to two days before menstruation, continues throughout the period, and can sometimes persist for several days afterward.

Heavy periods:

Heavy menstrual bleeding can be a symptom of endometriosis, but it is even more common in cases of adenomyosis, a form of endometriosis that infiltrates the wall of the uterus.

It is characterized by very heavy bleeding, sometimes prolonged, which can lead to fatigue, anemia, and a reduced quality of life.

Chronic pelvic pain:

This is the second most common symptom. It refers to any pain occurring at any time during the menstrual cycle, located below the belly button, which may radiate to the lower limbs and/or the back (pelvis, lower abdomen, back, lower back, thighs, etc.).

These pains are often described as burning sensations or electric shock-like pain.

Dyspareunia (pain during sexual intercourse):

Pain experienced during sexual intercourse (or sometimes after, as orgasm can occasionally trigger pain) can be a symptom of endometriosis. This pain may be felt at the entrance of the vagina, along the vaginal canal, or deep inside the vagina.

In most cases, the pain is mainly felt deep in the vagina. This underlying pain can sometimes lead to a form of pelvic floor hypertonicity, also known as vaginismus. Vaginismus refers to a prolonged or recurrent contraction of the pelvic floor muscles surrounding the vaginal opening.

This can happen because the body anticipates pain, leading to an involuntary reflex contraction of the pelvic floor muscles, which can make penetration difficult or even impossible. It is important to understand that this does not mean the pain is psychological. Rather, it can be the body’s way of protecting itself by creating a physical response that reduces or avoids painful intercourse. The human body can be fascinating in how it tries to protect itself.



In some cases, vaginismus may therefore be a consequence of underlying pain. However, it is sometimes diagnosed as the primary issue, which can further delay the diagnosis of endometriosis. A less attentive gynecologist might conclude that the pain is due to “classic” vaginismus and describe it as psychological, potentially overlooking underlying endometriosis.

Digestive pain and/or disorders:

This relatively common symptom can present in different ways and may involve various types of digestive pain.

It may include cramp-like pain (similar to colic) when having a bowel movement, especially during menstruation. Some people may also experience blood in the stool (rectal bleeding), discomfort caused by constipation and/or diarrhea (sometimes alternating between the two), as well as bloating or abdominal swelling, often referred to as “endo belly,” when the abdomen becomes disproportionately swollen.

These digestive issues are likely linked to the inflammation caused by endometriosis lesions. However, a less attentive doctor or gynecologist may instead conclude that these symptoms are caused by irritable bowel syndrome (IBS) (as the digestive symptoms can be very similar) or by food intolerances, potentially overlooking underlying endometriosis.

Urinary pain and/or disorders:

This symptom may present as burning sensations when urinating (similar to a urinary infection), difficulty urinating (especially during menstruation), frequent urges to urinate (sometimes resembling a false cystitis), or difficulty fully emptying the bladder.

All of these symptoms can be painful and cause significant discomfort.

Neuropathic symptoms:

Neuropathic pain related to endometriosis affects around 40% of people living with the disease. It is a relatively common symptom, but its diagnosis and management remain a real challenge for both patients and healthcare professionals. These types of pain require a comprehensive and specialized approach to care in order to reduce their impact on patients’ daily lives and prevent them from becoming chronic.

Before discussing neuropathic (or neurogenic) pain in more detail, it is important to clarify a few elements. Pain is a signal sent by the body to alert us. The nervous system is a complex network of nerves and nerve cells (neurons) that transmit signals and messages between the brain, the spinal cord, and different parts of the body.

It consists of the central nervous system (CNS), which controls the main functions of the body, and the peripheral nervous system (PNS), which transmits sensory and motor information.

Neuropathic pain occurs when the central or peripheral nervous system is affected, whether by compression, inflammation, injury, or other factors. These nerve impairments lead to dysfunction, causing the nerves to send inappropriate pain signals, which can be intense and persistent.

Right shoulder pain during/ around menstruation:

Thoracic and diaphragmatic endometriosis are less common but possible manifestations of endometriosis. They occur when endometriosis lesions develop in the thoracic cavity or on the diaphragm. These tissues react to the menstrual cycle in a similar way to the lining of the uterus, meaning they can bleed and cause inflammation during menstruation.

One of the most distinctive symptoms of thoracic and diaphragmatic endometriosis is pain in the right shoulder. This pain is caused by irritation of the phrenic nerve, which runs close to the diaphragm and extends toward the shoulder. When lesions develop on the diaphragm, they may irritate or inflame this nerve, leading to referred pain in the right shoulder.

Symptoms may include chest pain, right shoulder pain, breathing difficulties, and pain during deep inhalation. These symptoms can be cyclical, often appearing during menstruation, which may help distinguish this condition from other thoracic or pulmonary disorders.

Thoracic and diaphragmatic endometriosis can be difficult to diagnose due to the rarity and non-specific nature of the symptoms. Diagnostic methods may include medical imaging such as MRI or CT scans, and sometimes thoracoscopy, which allows doctors to directly visualize the lesions.



Treatment depends on the severity of symptoms and may include hormonal treatments to try to reduce lesion growth, as well as surgical procedures to remove the lesions when symptoms are severe.

Infertility:

Endometriosis is often diagnosed during an evaluation for subfertility (reduced fertility) or infertility. Indeed, 30 to 40% of women living with endometriosis may face fertility challenges. Infertility is generally defined as the absence of pregnancy after at least one year of regular sexual intercourse without the use of contraception.

In many cases, people affected by endometriosis may have experienced little or no menstrual pain throughout their lives. It is sometimes only when they stop using hormonal contraception that symptoms begin to appear. This is also when more asymptomatic cases of endometriosis may be diagnosed.



However, for someone who has been diagnosed with endometriosis, it is important to discuss their desire for pregnancy with their gynecologist. Depending on the individual situation, assisted reproductive technologies (ART) such as intrauterine insemination (IUI) or in vitro fertilization (IVF) may be proposed, or a specific medical follow-up may be recommended.

Chronic fatigue and irritability:

These states are often the consequence of the symptoms mentioned above and the treatments that may follow. They can include extreme fatigue, nausea or vomiting, vasovagal episodes (faintness), depressive feelings, irritability, or anger.

And that is completely normal. It does not make you a weak person. It simply means that your body and your mind are exhausted.

The information on this page is based on content from the Toi Mon Endo ASBL website.

It was written by Laura Lequeu for the organization and reviewed and approved by the Toi Mon Endo scientific committee.