Endometriosis: the essentials for understanding and better living with it

In this article, we’ll be discussing what signs to look out for, possible causes, its impact on sufferers sex lives, as well as possible treatments and advice designed to help you live a little more peacefully despite the illness.

The endometrium is the mucous membrane that covers the inside of the uterus. When it begins to develop outside the uterus (on the ovaries, the fallopian tubes or even the peritoneum), we enter the world of endometriosis. These out of place cells can cause bleeding, adhesions and chronic inflammation when reacting to hormonal changes.

Although it’s possible for endometriosis to occur at any age after puberty, it arises most often between the ages of 25 and 40. It’s an illness that can greatly affect daily life, which makes early diagnosis and appropriate care extremely important.

Symptoms vary from one person to another and the intensity of each symptom is not always a direct correlation to the gravity of the illness. It is however, very common to experience things such as:

• Very intense period pains: here, we aren’t talking about usual period cramps, but pain that sometimes means one is obligated to take a break, to be repeatedly absent, or even make it impossible to move without suffering. Dizziness and nausea often go hand in hand with this kind of episode.
• Chronic pelvic pain: some people experience pain in their pelvic region when they aren’t on their period. This can get worse over time and affect one’s quality of life.
• Digestive issues: regular bouts of bloating, diarrhoea, or constipation, especially during the premenstrual and menstrual period. These episodes can be confused with irritable bowel syndrome (IBS).
• Constant fatigue: discomfort and pain, especially when it’s chronic, weigh on a person and bring about both moral and physical fatigue.
• Pain during sex: Penetration can become painful when there’s a lesion situated close to the vagina, for example on the uterosacral ligament or the ovaries, which gradually creates apprehension regarding sex.

The pain that women experience has long since been minimised due to this idea of “everything is normal when you have your period”. Many women tell themselves that it’s normal to suffer, especially during your period, which delays when they decide to consult a professional.

Getting a diagnosis can be a long process, as period pains are often minimised or considered ‘normal’. However, when suspected symptoms are made known, a gynecologist will usually perform a clinical exam, followed by an ultrasound or MRI on the pelvis. If the results obtained are insufficient, a laparoscopy (a slightly invasive form of surgery) can confirm the presence and the location of lesions. This procedure also allows for biopsies to be taken that can confirm the diagnosis.

The exact cause of endometriosis remains unclear. One hypothesis, ‘retrograde menstruation’ suggests that fragments of the uterus lining migrate into the abdomen instead of being flushed out during your period. Other ideas such as genetic predisposition or immune system malfunctions are being studied. Hormone imbalances and exposure to certain endocrine disruptors could also contribute to the appearance or the aggravation of this illness.

Sex can be greatly affected by endometriosis, due in most part to pain that can arise during penetration, or after sex. Arousal can also be dampened by chronic fatigue or fear of undergoing more types of suffering. Over time, this apprehension creates a vicious cycle where there’s a loss of libido. The fear of making a partner suffer can also impact a couple's intimacy.

To overcome these difficulties, it’s imperative to:

Medical intervention aims principally to relieve pain and reduce the progression of lesions. Hormone treatments are often prescribed (the contraceptive pill or progestogens) to regulate cycles, whilst pain relief or anti-inflammatories are prescribed for the pain. In more severe cases, surgical intervention (often done via laparoscopy) aims to remove or destroy endometriotic lesions.

It must be noted that there is no treatment to definitively heal endometriosis. Treatments are adapted on a case by case basis, with the help of a multitude of medical specialists (gynecologists, surgeons, pain specialists etc.).

Learning to deal with pain and fatigue is the main goal so as not to succumb to this illness on a daily basis. Knowing your own body and your cycle (moments of more intense pain, moments when you have more energy) can help to plan out your days and daily activities.

Some women find support in their friends and family members or through support groups, where they’re able to exchange tips and advice (how to deal with stress, getting counselling, life in a relationship). Adjustments to be made at work or at university can be discussed, taking into account the days when fatigue or pain makes it more difficult to concentrate.

Questions surrounding fertility must also be taken into account if the desire to have children arises. Endometriosis can have an impact on the ability to conceive, specialist advice is often recommended to look into options for assisted human reproduction (such as IVF) if needed.

In any case, it’s imperative to be kind to oneself: know your body's limits, take breaks when your body needs it and speak to a professional the moment the pain becomes unusual or unmanageable.

Endometriosis is a complex illness in which the seriousness and the symptoms change from one woman to the next. However, thanks to a suitable diagnosis, medical care and support from those around you or from dedicated groups, it is possible to learn to deal with the pain, reducing the impact that endometriosis has on your daily life as well as your sex life. Research continues to better understand how endometriosis works and to create better solutions. Whilst waiting, educating yourself and not being afraid to speak up are both essential steps to stop you from suffering the taboos of such an illness, allowing you to work towards a better quality of life.