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. 2021 Aug 9;16(8):e0255830. doi: 10.1371/journal.pone.0255830

Table 2. Themes and sub-themes of treatment-seeking for PCOS.

Title Theme Code / Subtheme Verbatim
Treatment-seeking behavior or coping strategies for PCOS Barriers to treatment Concept of normality “My mother, too, had a menstrual irregularity problem, so I thought it is normal.”
"I thought it is normal to have irregular menses. Never thought it results due to some underlying disease."
Ignorance "I was careless, ignored the problem, considered visiting a doctor as a waste of time."
Concept of endurance/tolerance “I would generally get menses once in 2 months; even family did not take it seriously. . . I was balding; probably the weather of the new place did not suit me, or it might be hereditary.”
Relief from symptoms “My periods would come whenever I decided to visit a doctor after phases of oligomenorrhea."
Time constraint “Due to family issues, I was not able to take time out for my health problems. I ignored my health issues."
Happy to miss periods “Did not tell my parents that I was having menstrual irregularity because I was happy that they are not coming. I told them after my graduation.”
Concealment of symptoms (Shy/Embarrassed/Fear) "I was shy and scared of getting an internal check-up by a gynecologist. I was even terrified of injections.”
“I thought my parents would doubt my character, so I did not inform them about my condition.”
No faith in doctors “Consulted a doctor after the menstrual cycle skipped; the doctor lied that I am pregnant and later said I had an abortion. None of it was true. My mom-in-law asked me to consult another doctor."
No escort no consultation “My husband is too busy; has no time to accompany me to a doctor.”
Poor access to health services “The doctor was not available whenever I would visit the government hospital.”
Change of Place “I was taking medicine from Jalandhar, but when we shifted to another city, I discontinued the treatment.”
Over the counter medicines / Self remedy “In between, I would take ashokarisht and would get some relief.”
Reason for treatment initiation Menstrual irregularity “Just 15 days after my engagement, the menstrual problem started; the menstrual cycle was late with spotting issues."
Bodily changes “Hair growth was my concern; on doing an Ultrasound investigation, PCOS was detected.”
Fear of infertility “I got scared when my friend said that an irregular menstrual cycle leads to infertility; I immediately visited the doctor.”
Peer pressure/bullying “It was when my friends started teasing me that I have kept moustaches like men.”
Incidental Diagnosis “Got an ultrasound done for kidney stones and came to know about PCOS.”
Friends with a similar problem “One of our neighbours was taking treatment from PGI for PCOS. She reported improvement, so we also came here.”
False pregnancy alarm “When the menstrual cycle skipped, we thought it could be due to pregnancy, but it turned out to be PCOS."
Advice by Doctor New normal "Doctors said nothing to worry about regarding PCOS, these days 75% of girls have this problem."
Concept of normality “Doctors said nothing about it. She is young; her hormones are changing. With time, everything will be normal.”
Doctors ignorant about treatment “Doctor said, ‘Come later after marriage, if unable to conceive’.”
“PCOS has become very common these days (75% girls have it); so nothing to worry about. "
Modify Lifestyle “My cousin is a doctor; he asked me to correct my diet and do yoga.”
Hormone treatment not for adolescents “I consulted a doctor. But he said, ‘You should wait; I cannot start hormones at this age.”
Advice received from family and relatives Concept of normality “Relative said there is nothing to worry about; even her daughter had an irregular menstrual problem. Nothing serious about it."
No cure for the problem “Friends said, there is no cure for PCOS and in future, I might face problems like infertility.”
Awareness about disease and remedy “Everyone advised me to lose weight and the problem will resolve. They told, ‘Don’t go after medicines’.”
Faith in PGIMER “My uncle was successfully treated here. Our family has faith in PGI; so I also came here.”
Consult Doctor “When my aunt came to know about my condition she asked my mother to consult a doctor.”
AYUSH / indigenous treatment “Relatives said allopathic medicine has side effects; so thought of starting homoeopathic treatment."
Home remedy/concept of food as a cure “Friends and relatives said,’ her cycles will get regular on its own; just give her ‘hot’ things to eat.”
Problem with the treatment Delayed diagnosis “It has been more than a month; they are just getting tests done. No medicine is given so far.”
Ineffective "Treatment is not effective. The only acne has subsided, but menses are still irregular."
Dissatisfied (Limited options/side-effects/taboo) “Have consulted infinite no. of doctors, but had no relief. Would get menses only with 21 days ‘medicine.”
“Do not get menstrual cycle without taking medicines, due to drug dependence.”
“I did not take OCPs prescribed by the doctor; these are for married women.”
Expensive “Blood tests easily costs Rs 6000/- from private clinics.”
"Private doctors charge nothing less than Rs 500–800 for a single consultation."
Repeated investigations “Every time I consult a new doctor, the tests are repeated; even when I show them previous reports.”
"I am on medication for 3 years; have gained weight due to treatment.”
Difficult to lose weight “My sister is a doctor; she asked me to reduce weight; but I was not able to do it, despite my efforts.”
Choosing PGIMER for treatment Expert opinion "Not taken medicines prescribed by the private doctor; thought of taking 2nd opinion from PGI.”
PGIMER–the best hospital “A doctor advised me to get ovarian drilling; so I came to PGI for their opinion. PGI is the best.”
On referral by doctor/significant other "From last 3 months, the menstrual bleeding was not stopping. I came for treatment to PGI, as my sister was taking treatment from here only. She asked me to come along.”
Poor response to AYUSH “Homeopathic medicines stopped having any effect on my condition; so I came to PGI.”
PCOS awareness and quality of information Ignorance / No information “I have no information about what PCOS is; and that I am suffering from it.”
Confusion “What is the difference between PCOS and PCOD? One doctor said I have PCOS and the other PCOD. I am confused.”
Difficult to understand "Did try to get information about PCOS on the internet, but didn’t understand anything.”
Inadequate information provided by doctors "Doctor told me, ’your ovaries are filled with water."
“I am told that I have cysts in ovaries due to hormonal imbalance”. During the interview, she asked, ‘Does this mean I have cancer?”
The authenticity of information on the internet doubtful "If you search any disease on the internet, the concluding lines almost always state that the disease can lead to cancer and death."