Endometriosis : everything you need to know

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Recurring pelvic pain, pain during sexual intercourse (dyspareunia) and/or during menstruation…a large number of abnormal symptoms sometimes appear in women and can signal the emergence of a pathology that many are still unaware of : endometriosis.

In France, one woman in 10 of childbearing age is affected by endometriosis. Even today, the diagnosis of this disease is made rather late in most cases. If you have any doubts, the first thing you should do is to consult your gynaecologist or general practitioner or a midwife immediately.

Since 2019, the Ministry of Health has set up a care protocol dedicated exclusively to this pathology, which now allows for more effective management in terms of diagnosis, treatment and therapeutic follow-up.

Definition

Endometriosis is a chronic gynaecological disease that is very complex and difficult to live with on a daily basis. It only affects women who can already procreate. In medical terms, it can be defined as a pathology characterised by the development outside the uterus of a tissue (the endometrium) that resembles the uterine mucosa and affects the other organs located around the reproductive system.

This tissue can also be found in the digestive system, on the fallopian tubes or even on the ovaries. The endometrium is also influenced by hormonal changes during each subsequent menstrual cycle.

The symptoms of this disease often vary depending on the person affected. However, endometriosis generally manifests itself as frequent pelvic pain, pain during sexual intercourse and during menstruation. As a result, it can lead to infertility in women of childbearing age. Although benign, it will tend to lead to physical disability in daily life.

The causes or origin of endometriosis

The onset of endometriosis can be linked to several factors. This disease has a genetic origin in more than 10% of cases. However, factors related to the patient’s environment also play an important role in the occurrence of this disease, in particular the consumption of chemical substances.

Although the causes of endometriosis are generally well identified, it is still difficult to know why some women suffer from it. Genetic factors, immune system dysfunction… several hypotheses have been put forward to try to explain the origin of this disease.

The first hypothesis was built around the concept of retrograde flow. The superficial layers of endometrial tissue (the endometrium) and blood are normally ejected outwards during menstruation due to muscle contractions. However, it is possible that there is a reversal of blood flow (hence the term retrograde flow), which causes blood containing endometrial cells to be drawn back into the pelvic cavity through the fallopian tubes. It is a reflux that occurs occasionally in the majority of women. However, only in some women is it accompanied by the implantation of endometrial cells.

Another hypothesis is that the endometrium migrates out of the uterus via the blood or lymph.

Finally, it is also possible that some cells normally located outside the uterus mutate into endometrial cells due to the influence of environmental and genetic factors.

Hereditary/Genetic Endometriosis

Although the exact cause of endometriosis is unknown. However, hereditary has a huge role to play. This condition often affects members of the same family, such as sisters, mothers, and grandmothers. People who have cousins with endometriosis are also at risk. This condition can be inherited either from the paternal or maternal line. So what can you do if endometriosis runs in your family? No research proves that you can prevent it. And it is not guaranteed that you are going to have it too. But it is good to let your doctor know that you have a family history of the condition. Lifestyle modifications like exercise on a regular, limiting your caffeine intake and avoiding alcohol can make the difference.

The different stages of endometriosis

Just before I demystify the endometriosis stages, let’s take some time to acknowledge that this condition can make life difficult for women.  It may be how you spend endless hours in the doctor’s office or how you are wracked with excruciating pain every time your period comes around. But even women that have dealt with endometriosis for years don’t know much about the stages and what they mean.

Just as there are different types of endometriosis, there are also different stages. Doctors assign certain points depending on the depth,  spread of the endometrial tissue and where in the body is affected. Let’s check out the stages.

  • Stage 1 (Minimal) – This is where there are just a few clumps of tissue or small lesions, and this could be present on the uterine walls, tissue lining in the abdomen or pelvis. In this stage, there is little to no scar tissue. Women may also feel severe pain and discomfort at this stage. Because stage one endometriosis is considered minimal does not mean it is painless.
  • Stage 2 (Mild) – This stage means more implants are found deeper in the tissue than in stage 1.
  • Stage 3 (Moderate) – There are many deep implants and few cysts in this stage. There could also be the presence of thick bands of scar tissue called adhesions. This could cause the stabbing pain and nausea that many women feel.
  • Stage 4 (Severe) – There are many thick adhesions and implants, including large cysts on one or both ovaries.

Symptoms

It is important to go to the doctor as soon as the first symptoms of endometriosis appear. The earlier it is diagnosed, the better it will be treated. Early diagnosis also reduces the risk of infertility.

First of all, you should know that the symptoms discussed below may also be a sign of another disorder in the reproductive system, such as the development of an ovarian cyst. This can be detected quickly by a pelvic ultrasound.

Another important point is that the severity or extent of this disease cannot be judged by the intensity of the pain. The severity of the symptoms of endometriosis depends more on the location and size of the endometrial lesions.

The main symptoms

Pain in the lower abdomen is the most common symptom in women with endometriosis. This pain sometimes tends to radiate to the lower back.

young attractive Asian latin mixed woman lying on bed suffering stomach cramp ache and period pain feeling sick and unwell in cycle and painful menstruation concept and lifestyle

The main characteristic of this pain is that it is progressive and very often occurs more on one side of the abdomen than on the other. In general, it is quite difficult to distinguish between endometriosis-related pain and pain caused by menstrual cramps (in this case it is called dysmenorrhoea). It should also be pointed out that endometriosis does not in any way increase the flow of menstruation.

These pains in the lower abdomen, radiating to the lower back, intensify during the menstrual cycle, particularly when urination is required or when there is a disturbance in bowel movements (constipation, diarrhoea). The patient will also experience pain during sexual activity (dyspareunia). Moreover, these pains are sometimes accentuated during the ovulation period.

The other major symptom of this pathology is infertility and difficulty in conceiving (getting pregnant). Finally, there are some symptoms that are more or less indicative of endometriosis, such as:

  • Depression and irritability caused by chronic pain
  • Fatigue
  • Rectal bleeding during menstruation
  • Blood in the urine and/or stool
  • Spotting or brown discharge before the menstrual cycle

Treatments

There is still no treatment that can completely eradicate this disease. However, certain treatments are effective in slowing or even stopping the development of lesions, thereby improving the quality of life of patients.

To begin with, there are hormone treatments such as implants, IUDs or the pill, which aim to stop menstruation to prevent bleeding and the development of lesions. Usually it is only after trying several different treatments that your doctor will finally find the one that works best, i.e. the right treatment.

When medication is not effective against pain or when the lesions have spread too far, surgery may be considered. In this case, the surgeon will discuss the purpose of such an operation with you.

In addition, there are non-medicinal treatments that also improve the quality of life of patients. These treatments can be used to reduce and manage pain. This is particularly true of the yoni steam or vaginal sauna.

The following treatments are generally used to relieve endometriosis. Most of them are complementary:

Treatment with analgesic drugs

This section includes anti-inflammatory drugs such as ibuprofen (Advil®, Motrin®), Naprosyn®) or aspirin and acetaminophen (Tylenol®), which are prescribed by your doctor to relieve pelvic pain associated with this condition. Your doctor will tell you what dosage to follow.

Hormonal treatments

Although their purpose is to reduce the pain caused by endometriosis, they have no influence on fertility and the definitive treatment of this disease. At most, they block the secretion of hormones by the ovaries, which helps to reduce bleeding. Among the most commonly used options you have:

  • The Mirena® IUD is inserted inside the uterus. Coated with a progestin, this intrauterine device significantly reduces endometrial pain and menstruation. It is replaceable every five years and can leave stains during your cycle.
  • The contraceptive pill to be taken every day, without the slightest interruption. As well as being an effective method of contraception, it helps to reduce pain in some patients, prevent oestrogen deficiency and reduce menstruation.
  • Medroxyprogesterone acetate (Depo-Provera®): this treatment consists of injecting a progestogen into one of the buttocks every 3 months. The injection of this hormone makes it possible, among other things, to reduce or completely eliminate endometrial pain and menstruation and to inhibit ovulation. There are some side effects.
  • GnRH analogues (Lupron®, Zoladex®, Synarel®), injected monthly, these hormones induce the menopause and block the triggering of the pituitary gland. This treatment lasts 6 months and there may be undesirable effects. Do not hesitate to ask your doctor for information.
  • Danazol (Cyclomen®): this treatment lasts 6 to 9 months and allows an artificial menopause to be induced by completely blocking the production of oestrogen by the ovaries. Menstruation is also blocked in most patients. Like other treatments, it has side effects that disappear when the treatment is stopped.

Surgery

This is very rare and only occurs in a minority of cases when all hormonal treatments have proved ineffective. Surgery will also be performed if large cysts appear in the ovaries. Overall, the aim is to promote pregnancy and to remove very painful or embarrassing endometrial lesions.

Natural treatments

Natural remedies for endometriosis can help you manage the condition. Some of these natural remedies are:

Yoga

Fortunately, yoga can help you tune the pain down. Women with endometriosis should practice gentle and restful forms of yoga over intense styles. Many of these poses are comfortable enough for you to do for 10 minutes.  Studies have revealed that yoga has immense benefits, including reducing inflammation, stiffness and pain. Add the beautiful effect that yoga has on your mental health, and it’s a positive way for anyone with endometriosis to support their overall well-being and quality of life.

With the above in mind, grab your yoga mat and be prepared for some sweet relief with these Yoga poses.

  • Butterfly Pose

This pose relaxes the muscles in your pelvic region and inner thighs and helps to loosen the soft tissues, tendons and ligaments around your hips.

  • Goddess Pose (Restorative)

This calm pose can reduce pelvic pain and abdominal cramps. Deep relaxation is possible with this pose. It opens up your chest walls, hips and inner thighs.

  • Happy Baby Pose

It is a gentle hip opener that increases flexibility, reduces anxiety and aids mental clarity. While doing this pose, concentrate on relaxing your hips and pelvic floor.

Acupuncture

Acupuncture is traditional Chinese medicine. It has been in practice for centuries to address conditions that seem incurable. Based on recent studies, traditional doctors claim acupuncture is more effective than hormone therapy for treating endometriosis. Acupuncture helps to relieve period pain and pelvic pain, decreases the recurrence rate of endometriosis and improves your overall health.

The process involves using small stainless steel needles by a practitioner for certain acupoints in your body. Stimulating these points with needles helps to improve the body’s healing mechanisms and reduce the symptoms of endometriosis.

The connection between endometriosis and acupuncture is obvious. Since acupuncture is a holistic approach, women who undergo it will feel improvements all over their bodies. By restoring blood flow, acupuncture helps to regulate your monthly period and brings emotional relief.

It is a safe and natural treatment with fewer side effects than drugs and hormonal treatment in conventional medicine. Acupuncture therapy often lasts from 6 to 8 weeks. However, the therapy course still depends on different factors.

Naturopathy

Naturopathy is a whole-body complementary medicine that combines health therapies to treat a person. These multi-modality therapies include nutrition, lifestyle modification, herbal medicine, nutritional supplements and dietary changes. Naturopathic treatments for endometriosis include

  • Stress management
  • Boosting metabolism
  • Supporting Immunity
  • Supporting Sex Hormones
  • Anti-inflammatory diet: Do you know that eating unhealthy food can worsen your symptoms? I know you’ve been craving cakes and sweets for a long time, and you can’t wait to satisfy those cravings. Sorry about that! Naturopathic treatments include ditching your comfort foods for fresh vegetables and fruits.
  • Magnesium: Magnesium not only supports your nervous system by aiding relaxation, but it also helps to render steroid hormones inactive.
  • Herbal Medicine: It includes using analgesic and antispasmodic herbs like curcumin, turmeric, and chamomile to suppress endometrial cells.

Heat Therapy

Applying heat to your abdomen can help relieve the pain. The heat helps to increase the blood flow to your uterus, which makes you feel better.

Castor Oil

Many people swear by castor oil as a natural relief for intense pain. This natural oil is popular for its anti-inflammatory and medicinal purposes. Apply it externally to your abdomen and combine it with a hot natural water bottle or heating pad to maximise its benefits. But, you should never apply castor oil directly to your vagina to avoid disrupting its natural pH levels.

Ginger Tea

Have you ever been so overwhelmed by cramps due to endometriosis that you constantly feel nauseated? It sucks! When you can’t deal with the feeling, get a steaming cup of ginger to warm your body and soothe your stomach. Since ginger helps to curb vomiting during pregnancy, it also helps with endo-related vomiting.

Exercise

One of the common side effects of endometriosis in many women is weight gain. This can be a result of drugs and hormonal imbalances. To prevent excessive weight gain or loss, combine regular exercise with a healthy diet. The American Heart Association recommend up to 150 minutes of moderate aerobic activity every week.

Yoni Steam (or vaginal sauna)

The yoni steam refers to an ancestral practice whose name differs from one culture to another: Bajo in Spain or Chai-Yok in South Korea and North Korea. Inspired by traditional medicine, the vaginal sauna is said to heal and maintain the uterus in good health thanks to the virtues of heat and plants.

Vaginal sauna: how does it work?

The steam from the herbs prepared in the hot, boiling water is inhaled by the tissues of the vagina and the mucous membranes of the uterus: this heat absorption has the advantage of promoting blood circulation in the uterus and vagina, which ultimately helps to unclog, purify and tone the tissues of the reproductive system. You can practice yonisteam at home.

Some of its benefits

This non-medicinal treatment of endometriosis and many other diseases that can affect the vagina and uterus allows :

  • balance hormones
  • regenerate the uterus
  • relieve menstrual cramps
  • boost fertility
  • relaxes the vaginal canal
  • nourish and tone the perineal area
  • prevent vaginal infections
  • bring more regularity to menstrual cycles
  • reduce or limit certain vaginal disorders
  • rebalance the pH
A yoni steam in a relaxing environment

Sum up of the different natural remedies

No study has yet been conducted to confirm the effectiveness of natural health products in the treatment of endometriosis. However, there are a few tricks that are recommended by certified professionals (naturopath, phytotherapist) to limit the symptoms. This is very often the case with treatments based on prickly ash or viburnum bark, dandelion root and chasteberry.

Traditional Chinese medicine techniques such as the use of herbs (Chinese angelica, Chinese buckthorn or corydalis) and acupuncture are also used for the relief of endometriosis. These are mainly aimed at toning up the Qi (energy source) and the kidneys, while at the same time thinning out the blood circulation to prevent the blood from stagnating in the abdomen.

The practice of certain physical activities (yoga and/or tai chi) and the adoption of a healthier, balanced diet (for example, the diet with anti-inflammatory properties recommended by the American doctor Andrew Weil) also have a more or less positive impact on the management of endometriosis. The same applies to the yoni steam or vaginal sauna.

Help and care

Endometriosis affects approximately 1.5 to 2.5 million women of childbearing age in France. Most of these women are forced into a diagnostic errancy insofar as the diagnosis of this disease is generally made rather late (on average within 7 years). Unfortunately, this situation leads to inadequate management of their symptoms and even a worsening of their case.

What is more, to date there is no treatment that can permanently cure endometriosis. As therapeutic solutions are limited to pain relief, the French government set up a national strategy to combat endometriosis in February 2022, which aims to provide better care for patients in three major areas:

  • The strengthening of research thanks to a colossal funding of 20 million euros over 5 years
  • Improving the provision of care by allowing each patient suffering from endometriosis to have direct access to treatment in her region thanks to the creation of specific territorial or regional channels throughout the country by 2023
  • The popularisation of endometriosis both among healthcare personnel and the French population in general. This will be done in particular by training health professionals on the issue and by information campaigns aimed at the general public.

Endometriosis and adolescence

Symptoms of endometriosis can start as early as adolescence, with pain from your daughter’s very first period. If she can no longer go to school because she is in severe pain during her period, then you should take her to a doctor immediately. Unfortunately, many parents still consider this pain to be normal or even natural, which explains the extreme neglect that occurs.

Endometriosis and Sterilet

Although endometriosis has no cure, an intrauterine device or IUD can help people manage their symptoms. An IUD is a type of birth control. There are two types of IUDs: the hormonal IUD and the copper IUD.

Hormonal IUD releases progestin, which is a form of progesterone. This has proven to be an effective treatment for some women with endometriosis. It also helps to reduce the size of lesions and reduce your menstrual flow. In fact, many women stop seeing their period after a year of using the IUD.

While IUD may offer pain relief and allow you to live normally, it cannot treat endometriosis-related infertility because it is a method of birth control.

Some Endometriosis Books to go further

Getting educated about this condition is not a bad idea. Besides, summer is here, and there’s nothing more refreshing than relaxing with a frosty beverage and a good book. Here are some essential reads for endo warriors that will boost your mood, lift your spirits, increase awareness and provide useful advice on everything from diet and exercise to inspiring stories by others that you can relate to. The books include:

  • The Doctor Will See You Now by Tamer Seckin
  • Whole New You by Tia Mowry
  • Doing Harm by Maya Dusenbery
  • The Endometriosis Health & Diet Program: Get Your Life Back, by Andrew S. Cook and Danielle Cook
  • Rewired Life: A Journey to Untangle Chronic Pain and Endometriosis, by Audrey Michel
  • The Endo Patient’s Survival Guide by Andrew S. Cook MD Facog, Danielle Cook MS Rd and Libby Hopton MS
  • How to Live With Endometriosis by Eleanor Thom

Frequently asked questions

Who is affected?

Endometriosis is a disease that affects only women. In France, it is estimated that around 10% of women suffer from this still poorly understood disease. But beyond the people who are directly concerned (women), it is a real national health problem which calls on both the public authorities and families for a rapid diagnosis and more appropriate treatment.

How to be diagnosed?

The diagnosis is made by an endovaginal ultrasound performed by a specialist radiologist. The purpose of this ultrasound is to identify and locate the precise location of each lesion. In all cases, the patient should undergo at least an MRI (Magnetic Resonance Imaging).

How does endometriosis develop?

Lack of treatment or late treatment can cause endometriosis to worsen over time. The increase in progesterone levels during pregnancy often stops the bleeding from endometrial lesions, thus stopping the disease until the birth. But the disease will resume when menstruation resumes. At the menopause, the level of estrogens in the blood decreases, which causes the pain to disappear, unless hormone replacement therapy has been started. Finally, in very rare cases, this condition can increase the risk of ovarian cancer.

What is the effect on fertility?

Endometriosis is sometimes associated with infertility, but the truth is that infertility is not a particular symptom. Your doctor should prescribe an infertility test to identify the real cause if you are having trouble getting pregnant. To date, it is known, at the very least, that many patients with endometriosis conceive without major difficulties.