Learn about a painful disease that affects women and has no effective treatment

I started suffering severe menstrual pain since the age of 14 and I used hot compresses even at school to be able to spend the day. But at other times, the disease seized me and put me at home. The doctors did not know what had happened to me and thought that these symptoms were appendicitis.

Ten years later, I did not lose the pain and the doctors eventually diagnosed me with a disease called endometriosis. I did not learn from my patients, but in many meetings with doctors, I knew it was an incomprehensible disease and a no less difficult diagnosis of treatment, and that could live a lifetime.

The endometrium is a disease that affects women and is associated with the menstrual cycle. Several parts of the woman's body have tissues similar to the lining of the uterus and may exist in the fallopian tubes, pelvis, intestines, vagina, small intestine and sometimes reach the lungs, the eyes, the spine and the brain. The spleen is the only part of the body that does not have these tissues. Symptoms of this condition include pelvic pain and intense fatigue for long periods.

The disease affects 176 million women worldwide. In the United States, as in other countries, it affects one in 10 women of childbearing age. However, nearly $ 6 million is allocated each year to fund his research, while sleep disorder research, for example, receives more than 50 times that amount.

A study conducted in 10 different countries showed that the disease cost the patient an average of 9,579 euros per year on health care, insufficient productivity and quality of life, up to 26 euros per day, not to mention infertility, and that the pain itself Patients are exposed to other problems.

"We have evidence that intense pain affects the central nervous system and alters the response to future pain and makes it more susceptible to other chronic pain disorders," said Katie Vincent, pain specialist at the # 39, University of Oxford.

For those with signs of the disease – and many people live without symptoms – acute pain in the pelvic area is the most prominent symptom with no obvious physical cause, which increases the ambiguity.

since a long time

Through the discovery of endometriosis, Czech scientist Karen von Rukitanski was diagnosed in 1860, although some disagree, confirming the earlier discovery of the disease. Symptoms similar to the disease have been recorded since ancient times and have been called "hysteria" by women – the hysteria itself derives from the Latin word "uterus".

A study of pelvic pain in the medical literature revealed that many cases were overlooked as hysterical emotion, whereas they were probably cases of "endometriosis". The study says: "The original sense of hysterical contractions of that time was often reserved for women who had fallen to the ground in a certain way, perhaps because of acute abdominal pain."

Until now, the misunderstanding about the disease remains common: the disease is vague and incurable and can take a decade or so.

I spoke to three women who had been diagnosed with the disease and who were between 20 and 30 years old and who had all been misdiagnosed and underestimated their symptoms.

"No doctor in a clinic or hospital has ever mentioned the" uterine "disease, nor asked any questions about it, but all of them examine it or think that I'm raising the symptoms," says Alice Bodenham, 31 years.

Part of the problem is due to the lack of attention paid to the pain felt by women, although the pain is a symptom of endometriosis. I tried it myself when I had severe pain during an ultrasound. I informed the doctors and found them writing a comment with the result saying, "I felt a slight pain during radiation!"

Since the disease can not be observed without a keen eye and the doctor has not believed the description of the symptoms made by the patient, the woman is called "fancy"!

A UK government study of 2,600 women with endometriosis showed that 40% of those surveyed had consulted a doctor 10 times or more before being referred to a specialist. Boddenham and Cristal Rodriguez, 31, lost consciousness more than once before worrying about what they were feeling badly about.

"It's been three years since I went to an emergency clinic," said Kaitlin Conyers, 24, who runs a blog titled "My Diary with Endometriosis". She had symptoms of the disease but the doctors did not believe it. "He said that it was not the real reason," he said, "he did not believe me despite everything I explained to him during the menses and the pain. in the abdomen. "

"If a 14-year-old boy consulted a therapist and told him that he would miss two days a month to go to school, that would not be the case," said researcher Katie Vincent. University of Oxford. And when he was gone two days a month! "

What complicates things is that doctors do not detect the disease at an early stage, especially if the tissue infections are superficial. Lack of consciousness in the patient can lead to delayed diagnosis and there is a lot of reluctance when it comes to menstruation. Two of the three women I spoke to told me that a family member or a sex education officer had told them to wait until the menstrual cycle is painful, without saying what was reasonable.

Charities and activists are working to raise awareness about the disease and their efforts are starting to bear fruit: In 2017, the Australian government launched an endometriosis awareness plan and raised funds for related research up to A $ 4.5 million. In the UK, a government advisory body issued new guidelines in 2017 to help diagnose and treat the disease.

No magic solution

Even after the diagnosis, it is not easy to control the symptoms of the disease. Some doctors say that the solution is reproduction, which is illogical because the disease can cause infertility from the ground up, and the improvement is limited to pregnancy and motherhood.

In an interview with the American magazine Vogue, writer Lena Dunham noted that the removal of the uterus could be a possible treatment for the disease. But this option is difficult and tissue fibrillation is located outside of the uterus and not inside of it, so the problem will not end with l? removal of the uterus.

As the endothelial tissue is affected by estrogen, hormone therapy is often the first choice. But it can help the disease to improve and not heal completely, and cause side effects.

Some people resort to menopause through a medical intervention, but this is not a long-term option to cause osteoporosis, especially in younger women.

Otherwise, there is no alternative, with the exception of painkillers that only reduce the symptoms and do not solve the problem, not to mention side effects. "I used to run five kilometers a week," says Bodenham, "sometimes I feel that just bringing a cup of water is like running a marathon! "

However, Bodenham is grateful for the home, although the demand for this type of painkillers makes people believe that she is addicted (and that the opioid analgesics used by Bodenham can actually worsen the addiction and lose its effect over time).

Now the solution is to educate doctors and patients about pelvic pain. Until now, the symptoms of the disease are misinterpreted and diagnosed, representing a heavy physical and moral burden, as well as a material cost that many can not afford.

You can read the original article from BBC News

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