You have to be aware of her suffering

 

The renowned author of Wolf Hall, a Booker Prize winner, Hilary Mantel, once related a terrifying story. Of a pain that slashes horizontally along her lower belly, most likely in the same manner as a samurai’s abdomen would be sliced during a harakiri ceremony with a seppuku knife.

She has written extensively on the unbearable pain she had throughout each menstrual cycle as a teenager and how her trauma was accepted as “usual during periods” and went ignored.

Fearing that she would be pitied as the “one with a low pain threshold,” Hilary chose to conceal it. She endured the pain until it could no longer be covered up. She later wrote about it to convey it.

In the globe, one in ten women suffer with endometriosis and its twin adenomyosis. Among them was Hilary, who died in 2022 at the age of 70.

The endometrial tissue lining the uterine walls grows outside the uterus and into the ovaries, intestines, lungs, and even the brain as a result of endometriosis. Adenomyosis causes the uterus to soften and bulge as it develops into the myometrium, the uterus’s muscular walls.

These disorders’ underlying causes are still a mystery. Surgical treatments, lifestyle choices, and genetic variables are a few common imaginary villains. Doctors claim that only when estrogen levels are high enough to permit the growth of endometrial tissue can either disease develop.

Both endometriosis and adenomyosis result in excruciating pain and profuse bleeding. Together, endometriosis and adenomyosis present in 45% of cases. And the outcome is horrible.

Pain that travels from the pelvic area to the legs and lasts for days till the conclusion of the cycle is the first symptom, which appears two or three days before the cycle begins. According to Dr. Urmila Soman, head consultant for minimally invasive gynaecology at Apollo Adlux Hospital in Angamaly, “this is not normal because pelvic-related pain usually should not last for more than three to four hours.”

The World Health Organization estimates that endometriosis affects 190 million or 10% of women and girls worldwide who are of reproductive age. “Currently, there is no known cure for endometriosis, and the goal of treatment is typically symptom management,”

But there are gaps in the data. “The WHO is facilitating the collection and analysis of country- and region-specific prevalence data in recognition of the importance for awareness of both adenomyosis and endometriosis so that appropriate decisions could be made to contain the effects of the conditions,” the international organization said.

According to studies, 24.7 crore women and girls worldwide suffer from these illnesses, with endometriosis being the most common. At least 4.2 crore women and girls in India are affected by these illnesses.

Medical experts claim that between 23.5% and 80% of women in the age range of 31 to 50 who have had surgical operations treated for adenomyosis, despite the lack of precise evidence.

In the last ten years, Kerala has also seen a 10–20% increase in the number of women with similar conditions, with an increasing proportion of these women being in their early 30s. Doctors observe that although some instances have been documented involving women as young as 18, the majority of cases involve women between the ages of 25 and 50.

Thank goodness, more individuals are speaking out about these issues. Most likely, this explains the rise in instances.

In the past, patients would tolerate their discomfort and seek medical attention only when things were severe, according to Dr. Bimal John, a specialist in endometriosis and a consultant in minimally invasive surgery at Credence Hospital in Thiruvananthapuram.

Being mindful is essential.

Anu, a management professional, used to normalize her discomfort until it started to negatively impact her life. She recalls the day the anguish rendered her completely immobile. “My toddler once rolled off the bed and fell. The agony prevented me from moving,” she explains.

“It was crippling pain.” My career was put on hold, it interfered with my motherly duties, it impacted everything. That’s when I realized it wasn’t the “normal” menstrual pain that we’ve all been taught to believe.

In an effort to spread awareness about adenomyosis, well-known BBC reporter Naga Munchetty spoke about her experience last year. “I was unable to move, turn over, or sit up due to the excruciating pain.” She told a British radio station, “I cried all the time for forty-five minutes. Eventually, my husband had to take me to the hospital in an ambulance.

“I’m in agony right now while I sit here and chat to you. persistent, bothersome ache. inside my uterus. all the way around my pelvis. It sometimes slides down my thighs. And I will be in some amount of agony the whole time the program is on and until I go to bed.

March is Endometriosis Awareness Month worldwide, and India has been celebrating it for the last several years.

We have been doing awareness campaigns among women in general as well as in universities and schools. When discomfort starts to impair a woman’s quality of life, we advise girls and women to seek medical attention right once, says Dr. Bimal.

Severe mood swings and depression periods, which may be triggered by pain or blood loss, are one aspect of the illness. According to media expert Apoorva, “it is life-sapping.”

“I often think that giving up is preferable than going through this suffering every month. More traumatizing than the actual agony is the anxiety of suffering as the period approaches.

During the three to four days of her menstrual cycle, Apoorva continues, there are occasions when she takes two whole strips of strong painkillers. “I’ve even attempted to get fentanyl and opiate strips—which are often used for post-surgical care—from my medical acquaintances and utilize them when experiencing flare-ups. But nothing is effective,” she moans.

Handling

Medical care is tailored to the individual patient for each illness. Endometriosis and adenomyosis need different treatments. The last resort is surgery.

When a patient—who may even be a teenager—has endometriosis, medical intervention is provided depending on the severity of their discomfort and their reproductive objectives. Drugs are used to prevent the illness from becoming worse.

“Medication containing progesterone-based pills is administered to prevent the symptoms from getting worse.” Should that be ineffective, a 24-hour, 7-day-a-week intrauterine device is recommended, according to Dr. Urmila.

The last resort is surgery. Endometriosis may return, thus it could not be cured. Surgery may be able to treat adenomyosis since the tissue’s development is constrained. The goal of all other therapies is to essentially gain time for the surgical procedure.

There are no known strategies to prevent the disorders, says Dr. Urmila. “To improve vascularity in the pelvic area, it is recommended to maintain a healthy body weight, eat healthily, avoid chocolate and caffeine as much as possible, and practice yoga or other physical activities,” the spokesperson explains.

Dr. Bimal says the first thing to do is to quit normalizing the pain. “Seek a specialist, obtain a scan, and begin treating the symptoms,” he advises.

“Life quality is crucial. Please do not normalize pain and wait until the time it prevents you from having it. Although a cure may not come soon, efforts can guarantee improved symptom management.

On request, several names have been altered.

Endometriosis

About 10% of women and girls worldwide who are of reproductive age have endometriosis.

This is a persistent illness linked to excruciating, life-threatening agony during menstruation, sex, bowel movements and/or urine, persistent pelvic discomfort, bloating in the abdomen, nausea, exhaustion, and sometimes infertility, depression, and anxiety.

Endometriosis now has no known cure, and the goal of therapy is mostly symptom management.

It is crucial to have access to early diagnosis and efficient treatment for endometriosis, but this is not always the case, especially in low- and middle-income nations.

There are important social, public health, and economic ramifications of endometriosis. It might make living less enjoyable.

Some endometriosis sufferers have crippling pain that keeps them from attending job or school.

Endometriosis-related pain during sexual activity may cause sufferers and their partners’ sexual health to suffer as well as cause them to stop or avoid having sex.

By promoting their human right to the greatest level of sexual and reproductive health, quality of life, and general well-being, addressing endometriosis will empower people who are afflicted.

The adenomyosis

Adenomyosis is the result of endometrial tissue—which typically lines the uterus—growing into the uterus’s muscular wall. During each menstrual cycle, the misplaced tissue continues to behave normally, swelling, degrading, and bleeding.

Prolonged or intense menstrual bleeding

severe pelvic pain during menstruation that feels like a knife (dysmenorrhea) persistent pelvic discomfort

painful sexual relations (dyspareunia)

A person’s uterus may enlarge. There might be lower abdominal pressure or soreness.