March is Endometriosis Awareness Month. Endometriosis is a chronic, debilitating inflammatory disease that affects 1 to 2 out of every 10 people with a uterus of childbearing age worldwide[1]. 1] The severity of symptoms can vary widely, and every endometriosis is different. The lack of education on the subject, as well as the lack of representativeness, are causes of the long and tedious diagnosis. The month of March is an opportunity to raise funds and organize events to highlight the disease and educate the public. This month is a form of advocacy, and it gives a voice to people with endometriosis and their loved ones. It raises many essential testimonies during conferences, meetings, or walks. It helps to lift the taboo and the stigma surrounding endometriosis. In this article, we will attempt to go over the definition of the disease and its associated symptoms, its diagnosis as well as its social and psychological impact. Finally, we will list a few methods that can help alleviate the pain caused by endometriosis.
What is endometriosis:
Endometriosis is a disease that affects people with a uterus of childbearing age. It is characterized by the growth of tissue similar to the lining of the uterus (the endometrium) outside the uterus. This tissue can grow on other organs in the pelvic area, such as the ovaries, fallopian tubes, and pelvic wall. In rare cases, endometriosis can develop outside the pelvic area, including in the lungs, liver, and brain.
This misplaced tissue acts in the same way as normal endometrial tissue found inside the uterus. It thickens, breaks down, and bleeds with each menstrual cycle, but unlike normal endometrial tissue, it has no way to leave the body. This can lead to the formation of scar tissue and adhesions, which can cause the organs to stick together, leading to pain and other symptoms.
Endometriosis differs from adenomyosis in that it is located on the external parts of the uterine cavity. Adenomyosis is internal. Called "internal endometriosis", it refers to the presence of endometrium in the myometrium, the muscle of the uterus. Some people may have both adenomyosis and endometriosis[3].
The exact cause of endometriosis is still debated, but several theories have been proposed. One theory suggests that endometriosis occurs when menstrual blood containing endometrial cells backs up into the fallopian tubes and into the pelvic cavity, where the cells implant and grow. Another theory suggests that endometrial tissue may grow outside the uterus during fetal development and cause future endometriosis[4]. 4] Not knowing the origin of the disease, unfortunately, contributes to its misdiagnosis and the lack of treatment that patients face.
Symptoms:
The most common symptom of endometriosis is pelvic pain, which can range from mild to severe. Other symptoms of endometriosis may include:
- Dysmenorrhea and heavy periods: Many people with endometriosis experience pain during their periods. This pain can be severe and last for several days. Endometriosis can cause heavy or irregular periods.
- Dyspareunia: Pain during intercourse is a common symptom of endometriosis. People with endometriosis may experience pain in the pelvis, vagina, or lower back during or after intercourse[6].
- Chronic pain: People with endometriosis may experience chronic pelvic pain that is not related to their menstrual cycle. This pain can be sharp or dull and can last for months or even years. In addition, chronic pain can be low back pain, sciatica, neuralgia, and neurological pain. This pain can be disabling, sometimes resulting in total or partial disability, and in some cases, permanent, requiring morphine or strong analgesic treatment.
- Digestion and urination problems: Endometriosis can cause pain during defecation or urination, as well as severe digestive and urinary problems.
- Infertility: Endometriosis can affect fertility by causing scarring and adhesions that interfere with the function of the ovaries, fallopian tubes, and uterus. It is estimated that between 30% and 40% of people with endometriosis suffer from infertility[7]. Not everyone with endometriosi
s is infertile and not everyone who is infertile has endometriosis. It is important to make this distinction and not generalize the symptom.
- Chronic Fatigue: Some people with endometriosis may experience fatigue or exhaustion due to the chronic pain and inflammation associated with the disease, which may itself be chronic.
It is important to note that the severity of endometriosis symptoms can vary greatly from person to person. Some people have no symptoms at all, while others may experience severe pain and other complications. If you think you may have endometriosis, it is important to see your doctor to discuss your symptoms and treatment options.
Diagnosis:
The average time to diagnosis of endometriosis in Canada is 5 years[8]. This long delay is due to several factors. First of all, it is a disease that is still poorly understood and its causes are not precisely known. In addition, each endometriosis is different, in the form or severity of the symptoms. There are therefore several forms and stages of the disease. But the biggest factor to consider in the delay of diagnosis is the stigmatization of this disease, the taboos that surround it, the lack of recognition of the disease by the public, and the lack of training of medical personnel in endometriosis.
Numerous preconceived ideas about menstruation affect the credibility given to the discourse of people with endometriosis, creating a feeling of neglect in the face of the pain experienced. Demystifying endometriosis is therefore imperative to continue the fight to make the disease known to as many people as possible and to improve its management[9]. Patients' sensitivity to pain is often questioned. As with menstruation, people with endometriosis do not always dare to talk about the various symptoms and pain they experience, which are still taboo subjects. Many people suffering from endometriosis have experienced and regularly experience gynecological and medical violence, and for this reason, they do not seek treatment or diagnosis.
When general practitioners, gynecologists, or midwives question the patient correctly, it should be possible to determine the diagnosis: disabling pain during menstruation, during sexual activity, digestive and urinary problems, unregulated bleeding, pain when walking, etc.
Most of the time, a clinical evaluation (gynecological examination) is necessary to assist in the diagnosis and guide the recommendation of an ultrasound or MRI. Before surgical treatment, it may be helpful to explain the type or structure of the lesions and their effects by performing a vaginal and/or rectal examination. Naturally, these examinations must be performed with respect for the patient's privacy and with prior information about the need for these technological procedures and their sometimes excruciating nature due to endometriosis. The medical expert may be empowered to prescribe various tests, to make an initial therapeutic recommendation, for example, analgesics, and, if necessary, to refer patients to specialists[10].
Impact:
In addition to its obvious physical impact, endometriosis has a real impact on patients' lives.
Work and productivity: People with endometriosis may experience chronic pain and other symptoms that can make work and productivity difficult. They may need to take time off work or school to manage their symptoms, which can affect their career or academic progress. The illness has a disabling dimension in the workplace, and for many is a source of great suffering and stress (which are also aggravating factors). Arrangements are therefore necessary and beneficial to the well-being of both the employee and the employer. One should not hesitate to talk about it, and be assisted by a health professional in the discussion.
In addition, there is a real impact on social life. The chronic pain and other symptoms of endometriosis can make it difficult to participate in social activities or maintain friendships. Fatigue (either chronic or due to constant pain) makes it difficult to live "like everyone else" and patients may feel rejected from certain social activities because they are too painful or too exhausting. People with endometriosis may have to cancel plans or miss events because of their symptoms.
Endometriosis can affect relationships, including sexual relationships. 84.6% of participants in a study conducted by the organization EndoFrance in 2021[11] stated that they were emotionally affected by the disease. Endometriosis can affect fertility and make it difficult to conceive a child. This can have an impact on family planning and be a source of stress and anxiety for sufferers and their partners. Infertility is indeed a dark cloud over some people's family plans and can be experienced as a real trauma. In addition, the pain caused by dyspareunia can impact the sexual balance of the couple and reinforce the psychological pain related to this disease as well as the self-confidence and the relationship with one's partner.
Living with a chronic illness such as endometriosis can have an impact on mental health. People with endometriosis may experience anxiety, depression, and other mental health issues due to the stress and impact of their symptoms[12]. From the loss of self-confidence to isolation, the disease extends far beyond the physical and often has a profound psychological and social impact. Taking a strong treatment has important consequences and can be the cause of drug addiction. The effects of strong morphine or analgesic painkillers have an impact on fatigue, concentration, reflexes, or mood. The treatment can cause constipation, nausea, vomiting, respiratory depression, and potential dependence on the molecule[13]. Medical wandering reinforces this solitude. Incomprehension, misdiagnosis, lack of credibility, and the management of endometriosis still requires many changes to best support the patient in his or her illness. Being able to put words to one's ailments does not reduce the pain, but it does reconcile the patient with his/her self-confidence. It is therefore an essential step towards psychological healing and a first step towards a long journey to reduce physical pain.
The financial impact is also significant. Treatment of endometriosis, including medications and surgery, can be expensive. People with endometriosis may also experience a loss of income due to time off work or reduced productivity.
Finally, the relationship to the body is altered. Symptoms and treatments can cause a patient's weight to change very suddenly. In addition, sufferers may experience endo belly. This is a swelling of the belly, related to a disruption of the intestinal microbiota, or inflammation of the peritoneal fluid (the cause of endo belly is still debated and has not reached a consensus among scientists)[14]. In short, it is a swelling of the belly, its hardening, and a painful and unpleasant sensation, which can last from a few hours to several days. The phenomenon can be very impressive and constitutes, beyond the physical discomfort, a real emotional pain. Indeed, it is a brutal change of the body, a modification that arouses reactions from others. Many have experienced the famous "Congratulations, you're pregnant!", stage that is all the more painful when you know that endometriosis is a major cause of infertility. Many develop a strong complex and no longer dare to wear clothes close to the body, pass in front of a mirror or even leave the house.
People with endometriosis must have a strong support system, including healthcare providers, family, and friends. Support groups and advocacy organizations can also provide a sense of community and resources to manage the social impact of endometriosis.
Pain treatment:
Treatment for endometriosis depends on the severity of symptoms, age, and whether or not the woman wants to have children. Although there is no cure for endometriosis, several treatment options are available to manage symptoms and improve quality of life. These treatments may include:
-
Pain medication: Pain medications, such as ibuprofen and acetaminophen, can help relieve the pain associated with endometriosis. In some cases, prescription painkillers may be required, as well as stronger morphine or analgesic therapy.
- Hormonal therapy: Hormonal therapy can help regulate the menstrual cycle and reduce the growth of endometrial tissue. Hormonal therapy may include birth control pills, progestin-only pills, patches, or intrauterine devices (IUDs). It may be prescribed to reduce the level of estrogen in the blood to reduce the bleeding associated with the disease.
- Surgery: Surgery may be necessary for severe endometriosis or infertility. Laparoscopy, a minimally invasive surgical procedure, may be used to remove endometrial tissue and adhesions. Removal of the cysts or adhesions provides relief of symptoms. However, depending on how advanced the endometriosis is, this surgery can be conservative (keeping the organs) or total (removing the uterus/ovaries). The latter (total) is the only solution that permanently cures endometriosis, at the expense of the patient's fertility[15].
- Assisted reproductive technologies (ART): Assisted reproductive technologies, such as in vitro fertilization (IVF), can be used to help people with endometriosis who are struggling with infertility.
Some people find relief from the symptoms of endometriosis through alternative therapies such as chiropractic care and dietary changes (e.g., stopping gluten or inflammatory foods). Supportive solutions can be tailored such as:
- Practicing Hatha yoga helps to reconnect with the body while mastering support, placement, balance, and breathing. It stretches the muscles to provide deep relief from the pain of illness. If you are interested in this topic, I suggest you read our article about yoga for menstrual pain.
- Acupuncture is an alternative medicine method that consists of locating painful areas and diffusing energy evenly throughout the body. This technique could also help to rebalance the menstrual cycle. Cross-analyses have shown the positive impact of acupuncture on the fertility of patients while reducing the pain associated with endometriosis.
- CBD, a molecule derived from the cannabis plant, is a gentle alternative to relieve the pain associated with the disease. Having anti-inflammatory properties, CBD comes to relieve them. Containing less than 1% THC, it complements the use of a medicinal solution[16].
- Matcha is also a natural solution to relieve these pains. This drink is created from ground Japanese green tea powder. Mixed with water, it acts as a shot booster of antioxidants, caffeine, and vitamin C!
- The practice of sophrology. Being accompanied by a sophrologist allows you to better control your breathing and stress, which are aggravating factors in the disease. Sophrology can help you focus on your body and reduce certain types of pain through breathing and hypnosis methods.
- Self-massage with essential oils can relieve pain related to endo belly or poor digestion. Wearing appropriate clothing that does not compress can also be a great source of relief.
It is important to work with a healthcare professional to determine the best treatment plan to manage the symptoms of endometriosis. A combination of treatments may be necessary to effectively manage symptoms and improve quality of life. In addition, stress management through techniques such as meditation and exercise ise very effective in managing the symptoms of endometriosis.
Endometriosis is a complex disease that affects many people. If you have endometriosis, you are not alone. You must know how to be indulgent with yourself and patient with your body. Endometriosis is a serious, disabling disease and must be brought to light and recognized to facilitate the diagnosis but also to remove the stigma. The social and psychological impact of the disease must also be taken into account, and it is up to each of us to remain sympathetic. Getting help from a specialized health professional is essential, each endometriosis is different, but the fight is collective. You are not alone.
References
[1] https://endometriose.quebec/infoendo/
[2] L’endométriose est une maladie simple ! - Journal de Gynécologie Obstétrique et Biologie de la Reproduction 36 (2007) 106–107
[3] Diagnosis and Initial Management of Dysmenorrhea - Amimi s. osayande, md, and Suarna mehulic, md, University of Texas Southwestern Medical Center, Dallas, Texas
[4] https://www.has-sante.fr/jcms/c_2820460/fr/prise-en-charge-de-l-endometriose-argumentaire
[5] Endometriosis and pain - M. Canis, S. Matsuzaki, C. Rivoire, K. Jardon, S. Tamburro, B. Rabischong, G. Mage
[6] https://chroniques-endometriose.be/endometriose-et-sexualite/
[8] Endométriose Québec - https://endometriose.quebec/infoendo/
[9] Démystifier l’endométriose, Campagne de sensibilisation, Journée, semaine ou mois thématique, Rayonnement du personnel https://ciusss-centresudmtl.gouv.qc.ca/actualite/demystifier-lendometriose
[10] https://www.endofrance.org/la-maladie-endometriose/diagnostic-endometriose/
[11] https://www.endofrance.org/wp-content/uploads/2022/07/Endometriose-et-Vie-Affective-et-Sexuelle.pdf
[14] https://media.lelabdelendo.com/endometriose/troubles-digestifs-symptomes-traitements/
[15] Traitement me dical de l’endome triose douloureuse sans infertilite, RPC Endometriose CNGOF-HAS - M. Sauvan, N. Chabbert-Buffet, M. Canis, P. Collinet, X. Fritel, S. Geoffron, Legendre, J.-M. Wattier, H. Fernandez a,p
