Perils of polycystic ovary syndrome

CHENNAI: My family suggested that I go to the doctor and get anything wrong with me rectified. This was barely one year into the marriage and my husband and I were not focussing much on having a child just yet. Looking back, that scrutiny was quite bad then,” recounts Jayadivya Selvam, mother of a five-year-old. In a country like India where pregnancy is a subject of great interference, too many women in Jayadivya’s place are likely to have some version of this advice handed out to them. Perhaps, this likelihood increases all the more if you — like Jayadivya — are a woman living with PCOS aka polycystic ovary syndrome.

Pressure of pregnancy

The condition that lingers a lifetime comes with a myriad set of symptoms and challenges. But, in far too many families, it doesn’t seem to be raising red flags until there is reason to worry about the affected woman’s ability to give birth. Jayadivya’s diagnosis was a result of a paper on reproductive science in her undergraduate course in Zoology. By then, weight gain and hair loss were already concerns she had been dealing with since puberty. “That’s when I went to the hospital and they wanted me to go for a scan and other blood work. My condition was very mild. They asked me to focus on diet and exercise,” she narrates. Though she started off on that course, it wasn’t till a few years later that she earnestly put in an effort into the endeavour. And the results were pretty evident. By the time she was married, her periods were pretty regular. Yet, she couldn’t escape the scrutiny around her pregnancy or the lack of it. “It took me a year to conceive naturally and it raised a couple of eyebrows. My family is a very conservative set-up. People used to know if you were on your period; you’re isolated from the home and all that. So, when I wasn’t getting pregnant, they asked me to go to the doctor,” she recalls. A month’s medication — of progesterone tablets, she thinks — was all it took to get her to pregnancy and a healthy child. But, the going had not been as simple.

Shamini Mary, author, entrepreneur and life-coach, had been through the same rigamarole. “You know how it is in Indian families. If you’re not pregnant a year after marriage (you may get a grace period of six months after that), then you’ll get a lot of questions,” says she, who has been dealing with PCOS since she was nine years old. At least once a year, she would grow anaemic from a period that has lasted 20 days and would end only with a prescribed tablet. So, she was well aware that pregnancy might not come easily.

“We weren’t planning for a baby then but my husband didn’t want to tell our family that. So, there was a lot of pressure. And by the time we started trying, I was expecting it to happen the very first month. When it didn’t, I was worried that it would take longer and there’d be more questions to answer,” she says. But, her doctor had been incredibly supportive through the process. In a couple of months, she conceived naturally and is now a mother to a 15-month-old girl.

Medical misstep

While pregnancy preempts such external pressure, lack of prospects in a single woman could have the opposite effect — but from healthcare professionals, it seems. For Angeline Babitha, though her diagnosis came in her early 20s, relief and management didn’t follow suit. Why? The doctors she encountered figured it was better to wait till she was married, after which pregnancy would address all her concerns. This was when her periods were irregular and lasted an entire month when they did come, causing her to grow anaemic if she didn’t have a tight grasp on her diet. “I’ve been to two-three doctors and they all addressed the concern for the short term. When I was anaemic, they prescribed iron tablets. But, they didn’t treat the condition as a whole.

They leave it all for when it’s time for marriage because pregnancy is the only motive. There’s excessive bleeding? That’s okay. There’s a lot of pain? It’ll get better with pregnancy. I don’t know if that’s why my condition grew worse or if there’s really no means to address my symptoms. I went to the doctors when I realised something was off. But I didn’t get any awareness or guidance on how I can manage this, or what complications await in the future,” she shares, recounting her experience.

While such lack of information is prevalent in one part of the healthcare system, Jayadivya points out that a diagnosis itself may evade you depending on where you are and when you reach out for help. Her cousin had been without a child for 13 years into the marriage. Yet, there was great hesitancy in consulting a doctor. Why would she want to admit that something is possibly wrong with her when there’s so much pressure from the family, points out Jayadivya. When she eventually did go to the doctor, there was very little help offered. It took a visit to one in Chennai for her to get a diagnosis of PCOS.

Doctor’s advice

On her part, Dr Padmapriya Vivek, Head of Department - Obstetrics and Gynaecology, Gleneagles Global Health City, advises women with PCOS to look at treatment for infertility only when they have not managed to conceive after a year of regular intercourse. “The problem is, not all come for an evaluation before marriage. After marriage, everybody gets involved if you miss your period. But, they would have always had an irregular cycle. So, such women will have difficulty in conceiving. I wouldn’t say they won’t be able to; they might need help or might have difficulty; we have to be careful with the choice of words we use,” she cautions. But, from the patients she has had, she shares that there is a lot of peer pressure Indian women face. “I wouldn’t say it’s pressure... It’s a close-knit society right? People keep asking ‘when are you planning’ and such. Perhaps that does add to the pressure,” she elaborates.

Dr Balakumari, at KS Hospital, also points out that it matters how you put it across to the patient as well. “PCOS is associated with infertility but pregnancy can be achieved. When compared to a woman with normal ovaries, PCOS patients have more chances of infertility. Because PCOS women do not release eggs every month; and so they do not become pregnant. When you control the diet, focus on exercise and take drugs that induce ovulation, they will get pregnant. But sometimes, when doctors say it will be difficult for them to get pregnant, that settles in their head.

That will cause more trouble and the patient will believe that she is not going to become pregnant,” she points out. Ask her what the family can do to support the women during this difficult period and Dr Padmapriya says, “We can’t say ‘Don’t pressure them’. But, they can be supportive in terms of a healthy diet. They have to be given healthy options of food. Encourage them to schedule their time and utilise it for self, like exercise properly. It allows them to have some ‘me time’; for working women especially. And give them time and be a little emotionally supportive; do not add to the stress by talking about their fertility issues,” she advises.

It all comes down to diet and exercise — the primary method of care and management for PCOS; medication is only secondary and depending on the needs of the patient, says Dr Balakumari. And medication can birth control for unmarried women or those not planning for a pregnancy, ovulation-inducing medication for those trying to get pregnant and monthly pills for perimenopausal/menopausal women. At the end of the day, it’s a lifestyle disease and has to be dealt with lifestyle changes, she notes.