BBC – Future – What is endometriosis?

My painful periods started around the age of 14. I wore heat patches at school in hopes of being able to help all day long. Sometimes they did it. But sometimes, I found myself in the sick state to writhing in pain on the retractable bed, where the receptionists did not know what to suggest because I had already had my appendix removed.

Ten years later, I am in the process of being diagnosed with endometriosis. But far from simplifying my problems, what I've seen during my many doctor appointments is that the disease remains poorly understood – and that its diagnosis and treatment can be a complicated test that lasts a long time. life.

Endometriosis is a gynecological condition badociated with menses, characterized by the presence of tissue similar to the lining of the uterus in other parts of the body, including the fallopian tubes, pelvis, intestines , the bad and the intestines. In rare cases, it has even been found in the lungs, eyes, spine and brain – in fact, it's the only place in the body where it has ever been found is the spleen. Symptoms include severe, sometimes debilitating pelvic pain, fatigue and heavy periods.

Although many lesser-known health issues are underfunded and under-researched, few are as common as endometriosis, which affects around 176 million people worldwide. In the United States, where, as in other countries, it is estimated that it affects one in 10 women of childbearing age, it receives approximately $ 6 million (£ 4.7 million) in research funding each year. Sleep research alone receives more than 50 times this amount.

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Pain is not the only consequence of endometriosis. A study in 10 countries revealed that Endometriosis costs each patient an annual average of 9,579 euros. (£ 8,600) in health care, productivity and quality of life – that's more than £ 26 (£ 23.45) a day. It can be related to infertility. And then, there is a risk that pain makes patients vulnerable to other conditions.

"We have good evidence that severe pain changes the central nervous system, how you respond to pain in the future, and potentially makes you more vulnerable to other chronic pain conditions," says Katy Vincent, Senior Researcher on pain at Oxford University. .

For symptomatic women, and many are not, the main symptom is usually acute pelvic pain with no obvious physical cause. It can make it cryptic. But the fact that it is a health problem only felt by women – and particularly related to menstruation – has done more than an enigma.

Ancient origins

The microscopic discovery of endometriosis is most often attributed to the Czech scientist Karl von Rokitansky in 1860, although it's disputed and previous rudimentary microscopic discoveries have also been registered. In the meantime, the symptoms of endometriosis resemble those of antiquity. It also crosses the condition "hysteria", which derives for a Latin word for "from the matrix": A medical study on representations of pelvic pain in the medical literature reveals that many cases are described as hysteria may well have been endometriosis. "The original significance of hysterical convulsions during this period was generally referred to as women who fell to the ground, doubling in a fetal position," notes the study. "They could very easily describe a response to acute abdominal pain."

Historical underestimation and misunderstanding of endometriosis continue to inform modern medicine. Less sought after than other conditions, it is also less well understood. The cause of endometriosis is not known. There is no cure. It often takes about 10 years to get a diagnosis, and the only way to definitive diagnosis is a form of keyhole surgery called laparoscopy.

I never remember a single general practitioner or a hospital doctor who did not say "endometriosis". Or just by asking the right questions – Alice Bodenham

I spoke to three women diagnosed today with endometriosis, all aged 20 to 30 years old. In the process, all three were misdiagnosed and their symptoms disappeared or underestimated. "I never remember a single GP or a hospital doctor who said" endometriosis ". Alice Bodenham, 31, says, "That's really what's happening, or what you're inventing."

Part of the problem is the systemic tendency to reject women's painwhen the pain is the most common symptoms of endometriosis. I did experience it myself when I found an extremely painful internal ultrasound and that I informed the doctors: I later received my results by mail with the note "The patient felt a slight discomfort during the badysis". To make matters worse, there is no correlation between the level of pain felt and the severity of the person's condition.

As there is no non-invasive way definitive diagnosis, without a doctor who believes the descriptions of the patient's symptoms, there is no reference for a diagnosis. But Women's symptoms, too, are often dismissed as "all in the head".

A survey conducted in the United Kingdom among 2,600 women with endometriosis revealed that 40% had consulted the doctor 10 times or more before being referred to a specialist

It is hardly surprising that, according to a British government survey of 2,600 women with endometriosis, 40% had consulted the doctor 10 or more times before being referred to a specialist. Bodenham and Krystal Rodriguez, 31, collapsed several times before their pain was taken seriously.

Caitlin Conyers, 24, who runs the blog Diary of my endometriosis, began to suspect that she might have the condition by her own research, but this was rejected by her doctors. "About three years ago, I found myself in an emergency care center. I was looking for different causes and one of them was endometriosis. I suggested that to the doctor at the time and they just said, "Oh no, that's definitely not it," she says. "I explained that I had very bad my periods and my abdomen and that they always told me no."

Vincent of Oxford does not hesitate to know if bad plays a role. "If every 14-year-old boy went to the doctor and said," I miss two days of school every month, "they would stop missing school every month," she says.

To complicate things, doctors sometimes fail to highlight lesions on initial scanners, especially if the lesions are superficial. The forums on endometriosis are littered with stories of false negative ultrasounds.

A lack of awareness on the side of the patient may also delay the diagnosis. Menstrual taboos persist and two of the women I spoke with said that they were told by their family or by bad education that the rules could be painful or uncomfortable. What they have never understood, is how much a normal period should be painful (or not).

Charities and endometriosis activists around the world are working to raise awareness and their efforts seem to have been helpful. In 2017, the Australian government launched a National Action Plan for Endometriosis which aims to "improve the treatment, understanding and awareness" of the disease and increase funding to 4.5 million Australian dollars (2.5 million pounds sterling), new clinical guidelines and, most importantly, the subject treat integral part of the medical training of primary health professionals. In the UK, government advisory body of the National Institute for Health Care and Excellent (Nice) published guidelines in 2017 to standardize the diagnostic and treatment pathways of patients.

While this is a step in the right direction, there are already many guidelines for GPs to follow, says Anne Connolly, Women's Health Champion at the Royal College of GPs. Lone Hummelshoj, CEO of the World Endometriosis Society, adds that the lack of specialized centers is another global problem.

No quick fix

Even once the diagnosis is made, symptom management is not easy and disinformation persists here too.

Some doctors still tell patients that pregnancy is an effective treatment. This year, a doctor told me that she suspected endometriosis – but, she added, "we can not do anything unless you want to become pregnant." Since the disease can have an impact on patient fertilityit seems insensitive, to say the least. It's also inaccurate: while that relieve the symptoms of endometriosis, it is only valid during pregnancy.

Lena Dunham, author and performer, presented the profile of hysterectomy as a treatment for endometriosis by writes about his choice to undergo surgery in US Vogue earlier this year. But its use as a treatment for endometriosis is controversial. As the disease is characterized by lesions out of the uterus and not inside of it, its elimination is by no means a cure and endometriosis may re-offend thereafter.

Hysterectomy is by no means a curative treatment and endometriosis may re-offend thereafter.

As the development of the lesions of endometriosis is controlled by estrogen, hormone treatments are often one of the first prescribed. These can help manage the disease, but do not cure them and can have their own side effects. A 2016 study by Danish researchers found that women using hormonal contraceptives were more likely to seek treatment for depression. (Watch our video on eight women who have experienced serious side effects of the contraceptive pill).

Another potential treatment is medical menopause. However, this is not a long-term option as it can affect bone density, especially in young people, and, although rare, one of the potential side effects cited by the Zoladex brand is accidental complete menopause. Cook told me that there was a lack of informed consent regarding the use of this treatment. She says, "One of the things I often hear about is the number of women who end up taking drugs or getting injections into menopause who do not realize that's it.

As such, research is underway on potential alternatives.

"Drug treatments for endometriosis are all about hormones and we need something else because we know that many women do not work very well," says Krina Zondervan, a professor of genomic epidemiology and reproduction at Oxford University. "And that gives a lot of side effects that women are not so happy to feel in the long run."

Although they only treat the symptoms, not the disease, painkillers are another option. But they are not without harmful effect either. Bodenham told how the opioid painkillers she had been taking for three years left her a constellation of side effects, including "anemia and hypertension." She said: "I had the habit of running a 5 km each week … and now, a few days down to get a glbad of water, I've got it. feeling like a marathon. "

Despite this, Bodenham feels lucky to receive them – she knows that trying to find powerful painkillers can lead to accusations of addiction. (There is also a risk that the use of opioid badgesics will result in abuse or dependence, although it's a little bit in those who do not have a history of addiction or addiction.)

There is hope. The disease profile is on the rise and efforts are being made to educate general practitioners and patients about pelvic pain. But while patients wait for the medical system to recover, their symptoms are still not well understood and their illnesses are misdiagnosed and have serious consequences for physical and mental health.

Having found that birth control negatively affects my mental health, my next step is to decide to start treatment with the low dose of Mirena coil hormone or to continue a definitive laparoscopic diagnosis. But laparoscopy would require several weeks of recovery – and as an independent writer with little job stability, I would need more savings than me. This is another example of the difficult choices women make every day with chronic pelvic pain.

This story is part of the Sanitary deficiency, a special series on how men and women experience the medical system – and their own health – in very different ways.

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