KOCHI: Hilary Mantel, the celebrated writer of Booker-winner Wolf Hall, once shared a harrowing tale. Of pain that slices down her lower abdomen in a horizontal fashion, probably the way a seppuku knife would cut through a samurai’s abdomen in a harakiri ritual.
She has written extensively about how, as a teenager, she endured excruciating pain during every menstrual cycle, and how her trauma went unnoticed, normalised as “usual during periods”.
Hilary hid it out of fear that she would be looked at pitifully as the “one with a low pain threshold”. She bore the agony till a time it couldn’t be hidden anymore. Later, she expressed it through her writing.
Endometriosis, along with its twin adenomyosis, affects one in every 10 women across the world. Hilary, who passed away in 2022 at the age of 70, was one of them.
Endometriosis causes the endometrial tissue lining the uterine walls to grow outside the uterus, to ovaries, bowels, lungs and even the brain. In the case of adenomyosis, it grows into the myometrium, the muscular walls of the uterus, causing its softening and swelling.
Causes of these conditions are still unknown. Genetic factors, lifestyle, and surgical interventions are some popular hypothetical villains. Both the conditions, doctors say, occur only when estrogen levels are high enough to let the endometrial tissue to grow.
Endometriosis causes extreme pain, and adenomyosis excessive bleeding. In 45 per cent of the cases, endometriosis and adenomyosis manifest together. And the result is horrid.
The symptoms start two or three days before the cycle sets in with pain radiating from the pelvic region to the legs and lasting for days till the end of the cycle. “This is not normal because usually pelvic-related pain should not last for more than three to four hours,” explains Dr Urmila Soman, lead consultant - minimally invasive gynaecology, Apollo Adlux Hospital, Angamaly.
According to WHO, endometriosis affects roughly 10 per cent (190 million) of reproductive-age women and girls globally. “There is currently no known cure for endometriosis and treatment is usually aimed at controlling symptoms,” says.
Data, however, is patchy. “Recognising the importance for awareness of both adenomyosis and endometriosis, the WHO is facilitating the collection and analysis of country- and region-specific prevalence data so that proper decisions could be made to contain the effects of the conditions,” says the global body.
Studies say 24.7 crore girls and women are globally affected by these conditions, especially endometriosis. In India, at least 4.2 crore girls and women suffer from these conditions.
Though clear data is unavailable, medical researchers say 23.5 per cent to 80 per cent of women, who have undergone treatment of surgical interventions (31-50 age-group), are diagnosed with adenomyosis.
Kerala, too, has recorded a 10-20 per cent jump in cases of women with these conditions in the past 10 years, with a growing number of women in their early ’30s. In most of the cases, doctors note, the women are between 25 to 50, with some cases being reported among women as young as 18.
“Thankfully, people are now coming out to discuss such conditions. Probably, that’s why there is a spike in cases.
Earlier, the pain would be normalised and medical help would be sought only when things got out of hand,” says Dr Bimal John, consultant (minimally invasive surgery) and endometriosis specialist, at Credence Hospital, Thiruvananthapuram
Awareness is key
Normalisation of her pain was what Anu, a management professional, used to do till she found it hitting her life hard. She remembers the day when the pain numbed her to immobility. “I once saw my toddler roll off the bed and fall down. I could not budge due to the pain,” she says.
“The pain was debilitating. It stalled my work, affected my maternal responsibilities… in general, everything. It is then that I felt it was not ‘normal’ menstrual pain as we are traditionally told to believe.”
Last year, popular BBC presenter Naga Munchetty spoke about her ordeal, hoping to raise awareness about adenomyosis. “The pain was so terrible I couldn’t move, turn over, or sit up. I screamed non-stop for 45 minutes,” she told a British radio channel, adding that her husband had to eventually rush her to the hospital in an ambulance.
“Right now, as I sit here talking to you, I am in pain. Constant, nagging pain. In my uterus. Around my pelvis. Sometimes it runs down my thighs. And I’ll have some level of pain for the entire show and for the rest of the day until I go to sleep.”
World over, March is observed as Endometriosis Awareness Month, and India, too, has been observing it for the past couple of years.
“We have been organising awareness sessions in schools and colleges, and generally among women. We tell girls and women not to wait, and seek medical help once they find the pain is affecting their quality of life,” says Dr Bimal.
There are several sides to the conditions, one of which is severe mood swings and depressive phases that pain and loss of blood could bring upon. “It is life-sapping,” says Apoorva, a media professional.
“I often feel it is better to call it quits than endure this pain every month. The fear of pain, as the period nears, is more traumatic than the pain itself.”
Apoorva adds that there are times when she downs two whole strips of heavy painkillers during the three-four days of her period. “I have even tried procuring fentanyl and opiate strips, usually used for post-surgical care from my doctor friends and putting them on during the flare-ups. But nothing works,” she sighs.
Treatment
Medical treatment for the conditions vary to suit the patient. Treatment-wise, endometriosis and adenomyosis differ. Surgery is the last option.
In the case of endometriosis, medical intervention is given based on the pain extent and the fertility goals of the patient, who could even be a teenager. Medicines given are to suppress the further worsening of the condition.
“Progesterone-based pills are given in medication to control the further worsening of the symptoms. If that doesn’t work, then an intra-uterine device is prescribed that works 24X365 days in the body of the patient,” says Dr Urmila.
“The final stop is surgery. It may not cure endometriosis, which can relapse. In the case of adenomyosis, surgery could cure as the growth of the tissue is contained. All other treatments are done to basically buy time for the surgical intervention.”
Dr Urmila adds that there are no proven ways to avoid the conditions. “Maintaining a healthy body weight, eating healthy, avoiding chocolate, caffeine as much as possible, and practising disciplines like yoga to improve vascularity in the pelvic area are recommended,” she says.
The first step, according to Dr Bimal, is to stop normalising the pain. “Seek a specialist, get a scan, and start working on managing the symptoms,” he says.
“Quality of life is key. The moment the pain does not let you have that, please do not normalise pain and wait. Cure may be a long way, but efforts can ensure better management of symptoms.”
Some names have been changed on request
Endometriosis
Endometriosis affects roughly 10% of reproductive age women and girls globally.
It is a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility.
There is currently no known cure for endometriosis and treatment is usually aimed at controlling symptoms.
Access to early diagnosis and effective treatment of endometriosis is important, but is limited in many settings, including in low- and middle-income countries.
Endometriosis has significant social, public health and economic implications. It can decrease quality of life.
Some individuals with endometriosis experience debilitating pain that prevents them from going to work or school.
Painful sex due to endometriosis can lead to interruption or avoidance of intercourse and affect the sexual health of affected individuals and their partners.
Addressing endometriosis will empower those affected by it by supporting their human right to the highest standard of sexual and reproductive health, quality of life and overall well-being.
Adenomyosis
Adenomyosis occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle
Heavy or prolonged menstrual bleeding
Severe cramping or sharp, knifelike pelvic pain during menstruation (dysmenorrhea) Chronic pelvic pain
Painful intercourse (dyspareunia)
One’s uterus might get bigger. One may notice tenderness or pressure in the lower abdomen