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Ovarian cysts

Sleeping over early signs can Prove too costly

Doctors are seeing an increasing number of young girls in Kashmir with ovarian cysts. NishahZargar speaks to patients and experts, and reports why early treatment is critical before the condition gets out of hand and triggers serious diseases.

It may sound like a health scare, but going by statistics it is, by all measures, a medical alarm. Studies reveal one out of every four girls in Kashmir is at risk of getting ovarian cysts. 
The condition is medically called polycystic ovarian syndrome- PCOS. Girls as young as 13 have reported this disorder. Doctors say girls in the age bracket of 13 to 25 are at grave risk of developing ovarian cysts. 
Experts warn the condition, if left untreated, can lead to serious reproductive complications including infertility. Studies and doctors also say PCOS can trigger cancer of the uterus and heart disaeses.
Azra Mir was 20 when doctors told her she has PCOS four years ago. “I felt like a bomb has dropped on me. I felt my life has come to a close,” recalls Azra. 
Doctors immediately put Azra on medication which went on for a year. “After that I felt a little better.” Sustained medical help finally saw her cysts go away.
Like most girls, what agonizedAzra was not the disorder itself, but how this condition is perceived by individuals and society. “I was worried about what people will think about me,” says Azra. 
There were other painful questions agonizing her—the story of almost all girls who are diagnosed with PCOS. “Will anybody consent to marry me now? Will I be able to have children?” Azra tells me in a hushed up tone as she papers through her old prescriptions.
 Like her fears, Azra’s symptoms were typical of girls who have PCOS. She was having normal menstrual cycles until something went wrong. “My periods came with bouts of pain I had never experienced before,” Azra recalls. The pain alerted her and she didn’t take this change lightly. This often is not the case with most girls whose periods are either disturbed or become overly painful or stop altogether—symptoms, doctors say, are tell tale signs of the onset of PCOS. Azra spoke to her mom about this who immediately took her for a medical check-up. “After I told the doctor about my painful periods she advised me to do an Ultra Sonography, USG test which showed cysts,” recollects Azra. The USG is a simple test used to confirm PCOS, apart from a blood test to check hormonal levels. 
Azra didn’t report other symptoms normally shown by girls who develop ovarian cysts like facial hair growth, acne, weight gain or irregular periods.
“After a year and so of medication, my doctor asked for another UCG test and my cysts were gone. I breathed a sigh of relief,” adds Azra.

Genes of lifestlye?

Medical science is not certain about the causes of PCOS although research studies around the world point to several things. 
Research studies say hormonal imbalance in women could be at the root of this condition. 
Prof Enrico Carmina from Italy, who is the Executive Director of Androgen Excess and PCOS Society of the World and a specialist in endocrinology, was recently here in Srinagar for a conference on PCOS. He spoke to me at length about this disorder.
Prof Enrico told me PCOS is caused by the dysfunction of the endocrine glands. These glands are located throughout the human body. They have the critical task of releasing hormones, and as a whole, they are commonly referred to as the endocrine system. “Abnormal changes in the hormonal release from this system affects women. It often causes clusters of small, pearl-sized cysts in the ovaries. The cysts are fluid-filled and contain immature eggs,” explains Prof. Enrico.
“Women with PCOS are at risk for Type 2 diabetes, high cholesterol and high blood pressure. Obesity also appears to worsen the condition. The degree of obesity may vary by ethnicity,” adds Prof. Enrico Carmina


Prof Neena Malhotra a senoir gynecologist at AIIMS, New Delhi, also sees a connection between PCOS among Kashmiri girls and ethnicity. She and other experts feel the high incidence of PCOS among Kashmiri women could well be in the genes.
“If we trace back two to three generations of the northern part of South Asia, including Pak-administered Kashmir, we realize the race has its roots in Kashmir. Somewhere the genes are from a common origin and PCOS is a genetic predisposition among this population,” Prof Neena told me when she was in Srinagar recently. “It has just triggered because,” Prof Neena adds, “life style among Kashmiris has changed.” 

Apart from life style, Prof Neena counts eating habits as the main cause for the rise of PCOS in Kashmir. “For a Kashmiri, two meals out of three a day are non-vegetarian in contrast to someone who is non-Kashmiri. And the body mass index, BMI, of Kashmiri women is much more than women of other areas.”

Doctors say there has been a huge rise in the number of women in Kashmir having PCOS over the past few decades. They believe a lazy lifestyle, heavy meals and obesity are the main reasons for this abnormal rise. “One in four women in Kashmir is diagnosed with PCOS and it’s a matter of concern for us. The cause of PCOS is not fully understood, but genetics may be a factor,” says Dr. Ashraf Ganie, Professor at AIIMS, New Delhi.
Research studies also point to heredity being a contributing factor in the development of PCOS. Dr Ashraf says PCOS seems to run in the families. “Chances of having it are higher if other women in the family have PCOS or even diabetes. PCOS can be passed down from either your mother's or father's side,” adds Dr. Ashraf Ganie who has co-authored a research study on this subject.
Dr Ashraf’s study reveals that cases of premature menopause among infertile Kashmiri women are higher as compared to standards elsewhere in India.
Another report, Dr. Ashraf has supervised, says there is a higher precedence of Premature Ovarian Failure, POF, in Kashmir than anywhere else. “Early menopause (POF) cases in Kashmir are 20 per cent more than anywhere else in India,” the study reveals.
Experts also see a strong link between obesity and development of ovarian cysts. Prof. Enrico Carmina explains this to me in detail. “The complex mechanisms linking fat excess to metabolic syndrome are not well understood, but several experimental studies have shown that altered production of proteins secreted by the adipose tissue plays a key role in the development and progression of PCOS.”  Adipose tissue is a loose connective tissue located beneath the skin and in the internal  organs.Its main role is to store energy in the form of fat.

Doctors warn obesity puts women at a higher risk of reproductive disorders. Obese women are more likely to have menstrual irregularity and infertility than normal-weight women, doctors say. 
Studies show that weight reduction can restore regular menstrual cycles in obese women. “As little as 10% weight reduction can be effective in restoring regular ovulation and menses,” says Prof Enrico who has authored several research studies on this topic. “This,” adds Prof Enrico, “can help reduce the level of androgens in the body and may even help reduce PCOS related symptoms.” Androgens are a group of hormones present in both men and women. They play a role in male traits and reproductive activity. Increased androgen levels in the female body trigger male features like facial hair growth.  
Prof Enrico advises a healthy diet and regular work-outs as the first step to check fat accumulation and weight gain. “You need to change your lifestyle if you want to avoid PCOS. Make exercise a priority and eliminate simple sugars from your diet. Eat lots of fruits, vegetables, lean protein and whole grains.”


Breaking taboos 

Usually girls in Kashmir are reluctant to disclose their symptoms at the early stages of PCOS. Girls were even unwilling to speak to me about this condition for this report. The reasons are socio-cultural. 
Girls who are diagnosed of PCOS perceive it as some serious gynecological defect that will affect their reproductive health. Even families of girls with PCOS feel the condition is stigmatic and treat it almost like a disgrace. 
Azra, who took over a year to come out of PCOS tells me about her experience of living through the condition. “In Kashmir PCOS is treated as a deadly disease. Family members ask us to keep it a secret so that people won’t see you as an abnormal person. Then there is this myth that it makes a woman infertile,” says Azra.
Experts caution concealing the early symptoms leads to complications later on, making the treatment difficult. They also say the patient is likely to lapse into what they call “psychiatric morbidity”-- the incidence of both physical and psychological deterioration as a result of a mental or psychological condition. A cycle of anxiety and depression usually follows, say doctors. Changes in physical features like facial hair growth, acne and obesity further worsen the condition of the patient as it affects her self-image.
Another study, Dr Ashraf’ did with his colleagues, establishes the psycho-social fallout due to PCOS among Kashmiri girls. “In women with PCOS changes in physical features such as facial hair growth, obesity, or acne influence their feminine identity, and which are culturally defined here as unfeminine and undesirable. This affects the social image of the patient,” records the study.
Explaining this study Dr Ashraf says, “These physical characteristics often lead to social withdrawal and isolation along with a negative self image and lower self-esteem all of which are important risk factors for depression and anxiety disorders.”
Asma ,25, had a brush with these harsh realities after she was diagnosed of PCOS. “I had a thick facial hair growth and also gained weight. I found people around me reacting in a strange way,” recollects Asma. Depressed as she was, but support from her mother helped her to cope with the stress. 
And family support is crucial for young girls who are unable to handle the stress. Twenty eight year-old Bisma Khan faced the PCOS scare boldly and got ample support from her family after an early bout of fright. “Initially my parents were worried, but when doctors said it is treatable they were relieved. Their support helped me through,” says Bisma who had to go on long-term medication to roll back the cysts.
Luckily, the onset of PCOS gives sufficient warnings to the patient.  And if treatment begins early on, a host of health hazards can easily be warded off. 
Doctors say the girls must report any symptoms to her family, and the family should seek immediate medical help.  “Going for timely check-ups, taking regular medication and following advices of your doctor goes a long way in preventing this disorder,” says Prof  Neena.
“All problems induced by PCOS like infertility, diabetes, heart disease and uterine cancer can be prevented,” says Prof Neena, “by early diagnosis and treatment.”  
That, then, is the only key to stop things getting out of control.

(Names of the girls with PCOS appearing in this story have been  changed at their own request)

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