Vulvodynia, the painful and misunderstood health problem that only affects women

When the pain started, Tara Langdale-Schmidt did not play much. It was a pain that came and went when she used the bathroom, or when she and her husband had sex.

She had undergone a series of surgical interventions over the years in her fight against endometriosis – a disease in which the tissue along the uterus, also called the uterine lining, grows in places other than the uterus, such as the ovary, bladder or intestine, for example. the generation of symptoms such as severe pelvic pain. Then she thought that the pain was due to her medical history and hoped she would move on quickly. Instead, the pain worsened and became unbearable in the coming weeks.

"After a while, it felt like someone was cutting me in half and burning me with a cigarette in my vagina," says Langdale-Schmidt. "I tried to have sex with my husband and the only thing I could do was try not to cry, so I would not ruin the moment, it was pain."

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Caption image& # 39; It was an agony & # 39 ;, Tara Langdale-Schmidt describes sex with her husband who lives with vulvodynia

She went to a number of doctors. Some were disoriented. Most of them have sent her home. "A doctor literally told me that I had to drink wine, take an Advil, and relax." Another doctor even told me that I could cut off the part that hurt and prescribe antidepressants, what if it was a sexually transmitted disease or It was clear that I never went to these doctors. & # 39;

Furious, frustrated and in agony, Langdale-Schmidt, then 28 years old, decided to investigate the situation. After engaging in online discussions about the health of women and medical forums, she discovered discussions about vulvodynia, a condition that is barely understood and described as chronic pain or discomfort in the area of ​​the opening of the vagina.

The American School of Obstetrics and Gynecology defines vulvodynia as a pain in the vulva that lasts for three months or longer and is not caused by an infection, skin condition or other medical issue; the situation can occur suddenly or slowly over time. There are two different types.

General vulvodynia can be found at different times in different parts of the vulva. The pain can be constant or it can come and go. Localized vulvodynia is described as pain in a specific area of ​​the vulva. Often associated with a burning sensation, this problem is usually caused by touch or pressure, such as penetration, use of an absorbent material or sitting for a long time.

The pain, burning or irritation can make a woman so uncomfortable that having sex or even prolonged sitting is unthinkable.

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Caption imageThe condition can make a trip to the bathroom painful

"It can be incredibly debilitating," says Angie Stoehr, director of the Stoehr Center for Pelvic and Intimate Pain. "Some women with this condition can not even wear panties or pants because the pain is too intense, it is a matter of great quality of life and it can be difficult to treat it."

Vulvodynia was first documented in the medical literature in 1880, described as vulvar sensitization & # 39; and a fertile source of dyspareunia & # 39; (pain during sex), says Lisa Goldstein, executive director of the National Vulvodyia Association. Research shows that 16% of women in the US suffer from vulvodynia at some point in their lives. No comparable research has been done in Brazil.

However, due to a number of factors – including the difficulty of studying such a sensitive topic, variations in definitions and diagnostic criteria, and a historical lack of research into health problems affecting mainly women – the disease has not yet been sufficiently investigated. In 2011, more than 80 researchers worked together for a conference on vulvodynia research at the Institute of Child Health and Human Development in the US.

"Conference participants agreed that the evidence base for research on vulvodynia is scarce and that there is insufficient scientific research to reach a consensus on the best methods for diagnosis and treatment," they concluded. Their report added that the participants agreed that progressive scientists should be specialists in neurology, pain research and other areas, but that "very few researchers in all fields, especially in areas other than gynecology, had sufficient knowledge and interest in vulvodynia ".

Caption imageMore than one in seven women suffers from vulvodynia at some point in their lives

As a result, the situation remains a mystery. Often there is no recognizable cause and there is no cure for everyone.

Often "a team of experts is needed to diagnose vulvodynia and other pelvic disorders," says Rachel Gelman, a pelvic floor therapist at the Center for Pelvic Health and Rehabilitation in the US. "There are so many systems that meet and connect in the pelvis, everything could be the main motor of pain."

Some studies have linked vulvodynia to autoimmune diseases, nerve problems, nerve reactions, chronic candidiasis and even ethnicity, says Stoehr. The risk of vulvodynia also increases due to mental illnesses such as depression and anxiety, as well as events in childhood, such as chronic stress and sexual abuse.

A recent theory is that the symptoms of vulvodynia can not occur in the affected part of the body, but in the brain – as is the case with other chronic pain diseases. Research has shown that people who suffer from it have more gray areas in parts of the brain that process pain and stress. In other words, the problem may not be in the pelvic area. It can be how the brain processes signals from there.

As a result, some women try to find their own solutions. Knowing that vaginal dilators are used to restore vaginal capacity, to help enlarge it and to restore the elasticity of the tissue, Langdale-Schmidt has decided to be creative. From her previous experience with Neodymium magnets to reduce neck and back pain after a car accident, she decided to bring the two together, empty a dilator, fill it with magnets and use it for 20-30 minutes, two times a day. The use of the device immediately reduced the pain during sex by about 60%, she says. When used before penetration, she said that the pain decreased by 90%.

When she gave a prototype to other women with pelvic pain, she said she received messages as & # 39; I never thought I could have sex again & # 39; and & # 39; you have saved my marriage.

Caption imageTara Langdale-Schmidt created a dilator that was described by women who used it as a transformer & # 39; (Credit: Getty Images / BBC)

There is little research in Western medicine that proves the effectiveness of magnetic therapy, which is based on the idea that living organisms exist in a magnetic field and that healing occurs when electromagnetic energy is rebalanced.

Magnets, which theoretically increase blood circulation and relax hyperactive nerves, have played a central role in Chinese medicine for more than 2000 years. But several studies have found no evidence that magnets relieve pain or treat medical problems.

While some people see benefits in magnetic therapy, others benefit just as much from using a placebo, which means that relief can have psychological, non-physiological origins.

"There is not much good evidence in the scientific literature about magnets and pain," says Stoehr. Yet it sometimes suggests the dilator to patients with vulvodynia or vaginism, in contrast to a woman's dilemma to penetrate.

Caption imageVulvodynia can affect the most intimate relationships of women

"It is also common that it usually does not hurt a patient," she says. "Because pelvic pain disorders are very difficult to treat, I encourage my patients to try different types of treatments until we find something that works."

Not only is vulvodynia physically painful, but it can also be an emotional and mental burden for women and their intimate relationships. Many patients do not talk about shame and stigma.

Langdale-Schmidt says she was lucky that her husband supported her during the period: "He was very understanding and never pushed me to do something that would hurt me." But she spoke to other women who had not had the same experience.

"I have met so many women who were sitting at the bottom of the pit and who told me things like" my husband separated me because of "and" I do not want to live. "Or & # 39; doctors can not help me, I feel heartburn 24 hours a day, I feel so defeated, "says Langdale-Schmidt.

It is a major disorder in people's lives and can be socially isolating, says Stoehr, who had patients who were divorced because of their health problem. Others lost a lot of time at work or could not work because of the pain.

Caption imageThe condition can cause it to be painful – meaning that people who suffer from it find it difficult or even impossible to work

"Some women came here to ask" is there something wrong with me or am I crazy? ", Says Stoehr.

There are ways to deal with pain and to treat the symptoms, says Stoehr. But it may take some time to find the right therapy for each person. "This is not like a cold," she said. On the contrary, it requires symptom control for the rest of the patient's life.

"I could talk about my vagina all day long if it helps other women," says Langdale-Schmidt. "I like to say that I am famous for my vagina."

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