LUNA explains: What are the symptoms of endometriosis?

Endometriosis can cause a range of symptoms that vary from woman to woman. The definition of each symptom, and its chronological appearance in your life, can help you to better understand each sign and guide you to the right diagnosis. It’s very important to trace your history back and identify each symptom, classify each one over time and also understand how they affect your life and the way you do things.

Locating endometriosis

Endometriosis is a condition usually located in the pelvis where the following essential organs can be found: the vagina, the uterus, the colon and the bladder.

In some rare cases though, endometriosis can be found in the diaphragm, umbilicus, caesarean section scar or episiotomy scar.

The number of different anatomical locations explains why the signs of endometriosis are so variable. The symptoms of this condition, which are particularly painful, are determined by the presence of a significant number of nerves in all these organs, and the complex pathways inherent in transmitting the nerve signal to the brain.

All of the symptoms described below can be tied to a case of endometriosis, but they can also be triggered independently of the disease, at different stages of a woman’s life.

The combination of many of these symptoms, and the impact of their gradual onset and development on your quality of life and daily routine, may make you think of endometriosis.

Period pains are very common during the hormonal cycle. Low intensity pains are considered normal (intensity <6 sur 10). These pains are generated by the inflammatory nature of the menstrual cycle.

Period pain is considered abnormal and the sign of an underlying health issue if it is greater than 6 on a scale of 10. Intense period pain, which is deep, repetitive and intimate, can cause digestive or urinary disorders and even other more general symptoms (faintness, nausea, sickness, fatigue etc.)

Heavy bleeding during, before or after your menstrual period is also the frequent symptom of a regular or temporary hormonal disorder.

The combination of heavy bleeding with period pain is often a sign of endometriosis in the uterus: adenomyosis.

This particular form of endometriosis can be identified in women of all ages. It’s a very important symptom in the diagnosis of endometriosis and needs to be evaluated.

Dyspareunia is the pain you may feel during sexual intercourse. It can also be an issue at the beginning of sexual activity, but should disappear very quickly if there is no underlying condition.

Dyspareunia can be:

• Superficial, during penetration
• Deep, during sexual intercourse (depending on the sexual positions chosen)

These pains can also continue after sexual intercourse and occur alongside other symptoms (eg : dizziness).

These pains are not considered normal, and can be explained by several conditions, the first of which is endometriosis.

Unfortunately, women very rarely mention this symptom, which is often taboo and a source of suffering. Talking about it however is important, so we can assess its intensity and the consequences on our sex life.

Bladder pain is often difficult to interpret. It can be caused by urinating or having a full or empty bladder. It can also be related to a frequent need to empty the bladder.

Several conditions can explain this type of pain. However, the combination of bladder pain and blood in the urine can point to endometriosis.

This pain, either isolated or associated with other pains such as renal colic and/or lower back pain, may indicate ureter endometriosis.[/

Rectal problems, particularly when defecating, with pain and bleeding, are very important symptoms that need identifying before endometriosis can be diagnosed.

In this situation, the pelvic region is complex and the organs so close together that these symptoms alone aren’t enough to determine exactly where the pain and/or bleeding is coming from or diagnose endometriosis. Nevertheless, patients should talk about their symptoms to help improve diagnosis of the condition.

Infertility can actually be defined quite simply: it is the absence of pregnancy over a one-year period of regular sexual activity without contraception.

It can also be a symptom of endometriosis, particularly when the infertility is associated with pain.

We estimate that 40% of all infertile patients could be suffering from endometriosis.

This is why the symptoms need to be discussed with a reproductive specialist. It’s important to ensure that patients take a test for endometriosis before being treated for infertility.

The different localisation of endometriosis causes specific symptoms in certain patients. Here are a few rarer examples of endometriosis:

• Endometriosis of the diaphragm will cause general pain in the right shoulder.
• Umbilical endometriosis can cause umbilical pain linked to menstrual bleeding.
• After a natural birth or caesarean, endometriosis can develop on the caesarean scar or episiotomy scar. Symptoms are a combination of pain and bleeding in these areas.
• Sciatic, crural and vulval pain as well as certain motor and sensory losses in the leg can be caused by endometriosis attacking the sacral root and sciatic nerves. The cyclic and menstrual nature of this type of pain indicates the presence of endometriosis.

This situation is underestimated by the medical field. It is, however, very often connected to deep rectal endometriosis (near the uterus).[/

Endometriosis varies greatly from one woman to the next, the common factor often being a late diagnosis.

The years pass, and while waiting for a diagnosis the cyclic, intense and intimate pain will affect the other pelvic organs (vagina, rectum, small intestine, bladder, stomach).

This interaction develops through a network of nerves including those governing both motricity and voluntary sensitivity (noticed by the individual) and vegetative nerves (the network that manages autonomous organ function).

These multiple connections disrupted by pelvic endometriosis can explain a large number of the symptoms linked to the disease.

Often difficult for patients and doctors to interpret, these symptoms can be so intense that they can hide or prevent us from detecting the real signs of endometriosis.

Chronic pain, poorly explained, is responsible for both:

• The expenditure of significant energy to ensure a normal life
• A phenomenon of hypersensitivity

In effect, repetitive exposure to pain leads to a dysfunction in the central nervous system (brain and spine) that creates hyperexcitability of the neuronal system.

As a result, the pain signal increases, along with the perception of sensory hypersensitivity. This phenomenon is felt everywhere on the body, with a reduced pain perception threshold.

The following symptoms are connected to this mechanism and the intellectual and psychological perception of the patient.

Or the presence of pain in the muscles and skeleton with no apparent cause.

A drop in libido is secondary to chronic pain, fatigue and possible changes to relations in the couple. Vaginal dryness caused by the treatment can also contribute to sexual difficulties.

As stated previously, the presence of urinary, digestive and/or sexual symptoms can be a result of a reduced pain threshold and lead to the overexpression of the symptom.

Chronic fatigue is a symptom often expressed by patients with chronic pain, like endometriosis. In fact, struggling with the pain combined with diagnostic and therapeutic errors use up huge amounts of energy.
This constant fatigue upsets both professional and personal social relationships. A lack of understanding from friends and family can make the patient feel isolated, causing low morale and mood swings.

The lack of knowledge and awareness of endometriosis and the difficulty for patients to plan for the future, especially in terms of fertility, is a source of stress and anxiety.

The understandable concerns patients have over the lack of appropriate care should be studied and overcome to provide holistic therapeutic solutions, in other words considering every one of the symptoms women have: the symptoms of endometriosis, those surrounding endometriosis and general symptoms.

In some situations, often due to a very late diagnosis, and numerous medical consultations without response, symptoms can combine to become disabling.

Pain catastrophising is defined by a lack of long-term vision, and a lack of belief that life will get back to normal. This situation needs to be identified and the right questions asked so that the truly painful symptoms of endometriosis can be understood.

In fact, this situation can misguide doctors into focusing on the purely psychological state of health.

Scientifically validated by Dr Jean-Philippe Estrade
Gynaecological surgeon and expert in endometriosis at the Clairval Private Hospital and the Bouchard Clinique in Marseille.

See also: LUNA Explains: What Is The Endometriosis?