Endometriosis: 10 things not to tell an affected woman

Endometriosis is a chronic gynecological disease that affects at least one in ten women. In other words, each and every one of us knows at least one woman close to him with endometriosis. This disease is characterized by the presence of endometrium (tissue that lines the uterus) outside the uterine cavity, i.e. on the ovaries, fallopian tubes, rectum, intestine, bladder or diaphragm. These lesions cause pain during menstruation, but also often during sexual intercourse, theovulation, or even at any time during the menstrual cycle. Endometriosis can lead to infertility in 30 to 40% of affected women, who call themselves “endogirls”, Or even“endowarriors”, To give oneself courage.

In view of this unpleasant portrait, we quickly understand that some clumsy sentences can hurt! A selection of phrases to avoid and explanations. 

“Fatigue, pain… don’t you think you’re exaggerating?”

Pain is the first symptom of endometriosis. They are indicative of the disease. During menstruation, but also during or after sex for some, going to the bathroom, playing sports, during ovulation … They are an integral part of the life of an endogirl, who does what she can to to live with. The pain is sometimes so bad that some affected women pass out.

La chronic fatigue Another common symptom is that the body struggles with these endometriotic lesions and the chronic inflammation they cause.

So no, an endogirl is usually not the type to exaggerate or take advantage of her illness to be pitied, she actually suffers from this situation.

“Have a child, pregnancy cures endometriosis!”

The good joke! If pregnancy can sometimes “improve” the situation thanks to the absence of a menstrual cycle for nine months, it does not cure endometriosis, for which there is also always no real curative treatment. A woman with endometriosis has no guarantee to see her disease decrease or disappear after pregnancy. Besides, not sure that this is the best reason to have a child than to want a pregnancy to cure an illness, is it?

It should also be remembered that endometriosis causes infertility, which is difficulty in getting pregnant in 30 to 40% of cases, and that some women affected do not want children.

“You don’t exercise enough, you don’t go out enough”

Endometriosis pain is sometimes so debilitating that every effort is a test, especially during menstruation. Running, swimming, going to the gym, sometimes even walking can be painful. So, if sport is recommended, because secreted endorphins are painkillers, we quickly understand that some women with endometriosis reduce their physical activities.

Due to pain, leisure can also be impacted. Who wants to go to the movies with excruciating cramps? In times of crisis, the hot water bottle often becomes the best friend of endogirls, who also often suffer from very heavy bleeding during menstruation. In short, not an ideal situation to go out.

“You’ll see, pregnancy symptoms are hell!”

For a woman with endometriosis whose disease decreases the chances of pregnancy, getting pregnant is a challenge, a struggle, a dream that may be difficult to achieve. So obviously, hearing a woman who has not experienced infertility complain about the small inconveniences of pregnancy (even if they can sometimes ruin your life), it is not nice. An endogirl who is struggling to become a mother dreams of one day experiencing these pregnancy symptoms, which will remind her every day that she has won part of the fight against endometriosis.

So yes, for a woman who has had no trouble getting pregnant, nausea, stretch marks, heavy legs, contractions can feel like “hell”. But for a woman with endometriosis, it’s more synonymous with victory.

“You think about it too much, for it to work you have to let go”

Yes, it’s true, to get pregnant, we often recommend the let go, because psychological factors can influence fertility. Except that, it’s easier said than done. When monthly periods are a real physical and psychological ordeal, with disabling pain, that sexual intercourse is no longer a part of pleasure, that the desire for a child is transformed into obstacle course via in vitro fertilization… It’s hard not to think about it, to hope, or on the contrary to lose hope. Endometriosis can complicate a couple’s “baby trials”, although this is not systematic.

This advice, which starts from a good feeling, is therefore a little unwelcome. Rather than formulating it this way, why not offer the interested party a movie outing, a moment of relaxation, a good book, to change her mind? Certainly, it will be much better received.

“Do you have a big belly, is it coming soon?”

At certain times in the cycle, or because of certain foods, women with endometriosis find themselves with a very swollen and very hard belly, due to the inflammation. So some endogirls can look a few months pregnant.

But when we know that endometriosis is one of the main causes of infertility, this thought is rather unpleasant. What could be harder for a woman who is struggling to have a baby than to be mistaken for a pregnant woman?

“I pity your man, it can’t be easy every day”

That’s right, endometriosis is a couple’s illness, because both partners are impacted, one directly, the other indirectly. Sex life can be complicated, as can the plan to start a family. Despite everything, if we should not underestimate the impact of this disease on the spouses of patients, they are not the first victims. Pitying the endogirl’s companion in front of the first concerned is not very smart. Especially if it is to highlight all the difficulties from which she is the first to suffer.

“Take a Spasfon, it will happen”

Nice try, but missed. Endometriosis is characterized by pain that “does not go away” with a classic pain reliever such as paracetamol, or an antispasmodic such as Spasfon. Endogirls often take much stronger pain relievers for the pain, and even with that, the pain may persist. In adolescents, it is synonymous with school absenteeism. In adulthood, it can lead to regular work stoppages.

In short, endometriosis is not a small disease that “goes away” on its own with a few medications and a little patience.

“It’s okay, you’re not going to die either!”

This is the top level in disease minimization. While exaggerating endometriosis certainly doesn’t help, minimizing its physical and psychological consequences is counterproductive. Of course, endometriosis remains a so-called “benign” disease, as opposed to cancers, which are “malignant”. The fact remains that it can have serious consequences and complications. Drugs prescribed for endometriosis can cause very unpleasant symptoms: weight gain, acne, lack of libido, vaginal dryness, hot flashes, dizziness …

Note that cases of endometriosis in the eyes, lungs and even the brain have been reported, even if they are extremely rare. The endometriosis surgeries can also cause the wearing of an ostomy (external pocket for urine or stool), the removal of certain organs, scars … Yes, there is worse, but no, it is not nothing either.

“You are still young, you have plenty of time to think about it!”

This is the kind of phrase that older people easily say when an endogirl talks about wanting a child. Yes, 20 or 30 years old may seem young, but when you have endometriosis, the body clock is somehow going a little faster, since endometriosis can rhyme with infertility, and this by several mechanisms. Each new cycle can potentially lead to new attacks, new pain. So if it’s not necessarily an emergency, seriously considering starting a family is a medical recommendation for endometriosis. Some young women are so affected that the question of the desire for a child is addressed by their gynecologist even before they themselves have thought about it.

Endometriosis: getting information to better understand

To avoid unwittingly saying hurtful phrases, we can only recommend to relatives of a woman with endometriosis to inquire as much as possible about this disease, which we are talking about more and more. There are thus programs and documentaries, books of patients or affected stars, associations of fight, which make it possible to apprehend this gynecological disease. Beware, however, not to take a case for a generality, because according to specialists, there is no not one, but DES endometriosis, each case is different.

More:

• https://www.endofrance.org/
• https://www.endomind.org/associations-endometriose
• https://www.endofrance.org/la-maladie-endometriose/bibliographie/