Recognizing the early signs of endometriosis

Endometriosis is a common gynecological disease affecting one in ten women of childbearing age (Inserm). In recent years, you've probably heard about it in the media. More and more public figures are speaking out on the subject, which is great!

Lorie (our national star), Lena Dunham, and Cindy Lauper have all shared their daily battles with endometriosis.

If you haven't delved into the subject yet, you're in the right place. It's important to know how to recognize the early signs of endometriosis because this condition has significant effects on your cycle, your intimacy, your mental health, and your fertility.

We'll explain everything you need to know about endometriosis.

Endometriosis 101

What exactly is endometriosis? The 3 forms of the disease

As its name suggests, endometriosis is a disease that affects the endometrium: the uterine lining. It is characterized by the presence of similar tissues outside the uterus. These endometrial fragments can embed themselves in several places (where they don't really belong):

• in the ovaries (50% of cases),

• in the Fallopian tubes,

• on the uterine ligaments,

• on the peritoneum (membranes that line the abdomen),

• in the rectum, vagina, bladder, ureters,

• in other organs (rarer).

If you've diligently read our articles on the menstrual cycle, you know that the endometrium reacts to hormonal fluctuations. During menstruation, the endometrium sheds from the uterine wall and is expelled under the action of estrogen and progesterone.

Guess what? This also applies to endometrial fragments that are not in the uterus.

Result: with each cycle, the endometrial lesions grow and bleed. This causes chronic inflammation and fibrous lesions, sometimes very painful.

There are three main forms of the disease, depending on the location of the endometrial fragments:

1. Superficial endometriosis if the lesions are located on the surface of the peritoneum. They can be difficult to detect with imaging.

2. Ovarian endometriosis when the lesions form ovarian cysts called endometriomas.

3. Deep pelvic endometriosis when the fragments are located more than 5 mm below the peritoneum. This is one of the most complex forms of the disease. It can affect the rectum, vagina, and bladder.

A quick word on adenomyosis, which is a particular form of endometriosis, when the lesions are internal to the uterus.

Note that there is no correlation between the form of the disease and the intensity of the pain. You can absolutely suffer from superficial endometriosis and experience very severe pain during menstruation. Do not underplay your feelings: they are your body's compass.

What are the symptoms of endometriosis?

Endometriosis is a particularly debilitating and still underdiagnosed disease. It has considerable consequences on your experience during menstruation, your quality of life, your sexual life, and your fertility.

In general, the first symptom that alerts women is difficulty conceiving.

Why? We are used to enduring painful, long, and heavy periods, considering it "normal."

It's not.

Your menstrual cycle should never prevent you from flourishing, undertaking, or enjoying your intimacy. Therefore, if you observe irregularities in your cycle or debilitating pain, do not hesitate to consult a trusted gynecologist. To date, there is no systematic screening for endometriosis in the general population.

Diagnosing endometriosis: what's involved?

Diagnosis is only considered in cases of symptoms suggestive of endometriosis. The World Health Organization (WHO) outlines the main steps in diagnosis:

• A clinical gynecological examination performed by a general practitioner or a gynecologist,

• Medical imaging (pelvic ultrasound and pelvic MRI if necessary) to observe the presence of lesions.

Some endometrial fragments are minimal and invisible on imaging, so diagnosing endometriosis is not always easy. If you suffer from intense pain resistant to treatments or wish to conceive, a laparoscopy may be offered to you.

Well, it's not a walk in the park, but this surgical procedure, considered "minimally invasive," not only confirms the diagnosis but also allows for the removal of lesions.

Endometriosis: very concrete consequences on your daily life

Chaotic menstruations

If you suffer from endometriosis, you know how much the disease impacts your menstruation and your entire menstrual cycle. Periods are often very painful, heavy, and long, sometimes lasting for about ten days. Again, this is not normal. If this is recurrent, do not hesitate to discuss your symptoms with a healthcare professional.

Other symptoms are associated with these disturbances, such as nausea, intense fatigue, and digestive disorders.

The repetition of these chaotic cycles maintains inflammation and the progression of lesions in your body. The earlier endometriosis is diagnosed and managed, the better!

Moreover, most women with endometriosis develop deep anxiety about their periods. They dread this time of the month, feeling like they "lose control" of their cycle. Listen to your body and take care of it as early as possible.

Endometriosis and intimacy

Most women suffering from endometriosis also report consequences on their intimacy. They often mention pain during or after sexual intercourse. These discomforts are not systematic: they are sometimes deep, mechanical, or related to certain particular positions.

This, of course, impacts their libido, their self-confidence, and sometimes, the couple's relationship, especially if they haven't identified the cause of the pain. The emotional repercussions of endometriosis cannot be overlooked: guilt, misunderstanding, and isolation are never far away.

The first step if you are concerned: talk about it with your partner to relieve both of your guilt. Together, embark on a path towards diagnosis and solutions to regain a fulfilling sexuality. Because yes, solutions exist.

Second step: seek comprehensive care and surround yourself with a supportive medical team with whom you won't be afraid to discuss your intimate difficulties.

We'll tell you again if you doubted it: it is absolutely possible to have sex with endometriosis and even enjoy it! You have that right.

Can you get pregnant with endometriosis?

The answer is yes, but it's not always easy. Approximately 30 to 40% of women with endometriosis experience infertility, meaning they have difficulty conceiving (statistic EndoFrance)

The fertility rate is 2 to 10% per cycle for women with endometriosis, compared to 25 to 30% for couples without endometriosis.

Several possible causes for this:

• The mechanical lesions of the disease affect the functioning of the ovaries or fallopian tubes, which are key organs in the fertilization process.

• If the lesions affect the ovaries, this can also alter ovarian reserve (quality and quantity of follicles) and therefore, ovulation.

• Intraperitoneal inflammation and endometrial abnormalities are not favorable for fertilization and embryo implantation.

However, it is important to remember that infertility and sterility are not the same thing. You have a chance of becoming pregnant spontaneously, even if you suffer from endometriosis. 36% of affected women become pregnant naturally after 3 years of trying (Inserm).

If you are experiencing difficulties conceiving, your primary healthcare provider can refer you to an assisted reproductive technology (ART) process. Artificial insemination, in vitro fertilization (IVF), or fertility preservation may be considered.

How is endometriosis managed?

To date, there is no cure for endometriosis, mainly because, like its cousin PCOS, its cause is not well understood.

Management is therefore primarily symptomatic. It aims to:

• relieve pain,

• improve quality of life,

• preserve fertility if that's what you desire.

Initially, your gynecologist will prescribe hormonal treatment to suppress menstruation and spare you all the associated discomforts. This will notably reduce the activity of the lesions, and thus, the pain related to inflammation.

If this is not sufficient, surgery may be considered to remove the misplaced endometrial fragments. However, the intervention is sometimes complex, with a fairly high risk of recurrence.

We strongly recommend opting for multidisciplinary care with a doctor to ensure your medical management, but also a physiotherapist to relieve pain, a psychologist to address your emotions, a sexologist to discuss your intimacy, etc.

The important thing is to be well-surrounded, with a team of experts who understand you, caring friends, and a supportive partner.

We hope you now have a better understanding of the consequences of endometriosis. If you recognize yourself in the symptoms, do not hesitate to mention it to your general practitioner or gynecologist.

Stay informed on the subject: research is making great strides, particularly regarding early diagnostic possibilities and alternatives to surgery.

Take care of yourself.