The discourse around IVF is largely focused on success stories, leaving couples unprepared for crushing disappointment when the process fails.

How couples who go through IVF are left unprepared for its emotional costsImage for representation
Delve Health Wednesday, July 10, 2019 - 15:37

Vishakha underwent her first IVF (in vitro fertilisation) cycle when she was 28. She and her husband Madhav* had been trying to have children for over three years with no luck, so they decided to go for IVF.

“The doctor had told us that the IVF process had a 55% chance of working. I was excited, because I had heard of so many people who successfully had children through this,” the 35-year-old recounts. But only two weeks into the first cycle, the process had already started to become laborious - the regular injections and almost daily trips to the hospital, were overwhelming. But what kept Vishakha going was the thought of having a child.

IVF is an Assisted Reproductive Technology (ART), one of the methods that can be used for couples experiencing difficulty in conceiving otherwise. It involves extraction of the woman’s eggs and their fertilisation using the man’s sperm in a laboratory setting. The fertilised eggs – the embryos – are then implanted into the woman’s womb. She is further treated to improve the chances of at least one of the embryos attaching itself to the uterine lining, enabling her to get pregnant.

It was during the implantation of the embryos that Vishakha felt the intense emotional connection with them. “When they show you the embryos on the computer screen… you forget all about the probability. You think, these could be my kids; you see your future ahead,” she narrates.

She even started getting the symptoms associated with pregnancy in the following fortnight, thanks to the hormones that she was injected with to make her body believe that it is pregnant. 

However, her dreams turned to dust when the pregnancy test turned out negative.

The Indian IVF industry is expected to be valued at Rs 500 crore by 2022. Other estimates peg it even higher at $775.5 million or Rs 5382 crore by 2022, and $829 million or Rs 5757 crore by 2023. The industry is clearly lucrative, compounded by many well to do couples choosing to start families later now. Further, “women’s bodies have continually been seen as an easy way to make a quick buck,” points out Dr Sylvia Karpagam, a public health researcher. 

But when we talk about IVF, the discourse is largely focussed on success stories, which is why couples like Vishakha and Madhav often find themselves unprepared for crushing disappointment. And regardless of the outcome, couples, especially women, find themselves emotionally and physically stressed because of the nature of the treatment. 

In a two-part series, TNM attempts to shed light on some of these otherwise overshadowed stories of IVF, as well as the social pressures that contribute to the flourishing industry.  

The failures that no one talks about

The truth is that getting pregnant through IVF is a probability game, but most couples who shared their stories with TNM reported that they had not really considered the possibility that IVF would not be successful for them. 

IVF depends on a number of factors, such as the reasons that the couple is trying IVF (infertility issues, conditions like tubal block, low sperm count etc.). Experts say that the major factor is the age of the woman – the younger she is, the higher the chances are of success.

While these figures vary from centre to centre, Dr Kirthika, Reproductive Medicine Consultant at the Apollo Women’s Hospital, Chennai, says that if a woman is under 30 and other health indicators are not abnormal, the chances of pregnancy are about 60%. If the woman is over 30, then the chances are 35% to 40%. The ballpark figure for success seems to be 45% to 55%.

Dr Kirthika says she counsels couples about whether they need to undergo IVF; alternatives, if any; what are the bodily changes they can expect; the cost of the procedure, as well as the prognosis.

However, since most couples largely hear about the success stories, the subsequent disappointment of a failure catches them unawares at an already vulnerable time.

Take 36-year-old Sudha* for instance. Described as an emotionally strong and resilient person by her husband, Ramesh*, Sudha could not escape the anxiety that set in after she had a miscarriage during her second IVF cycle.

Seven years into their marriage, Sudha, then 30, underwent her first IVF cycle. However, wary of being financially exploited by hospitals, she and Ramesh had decided to do it only once. 

Sudha says she was emotionally stable initially, though it was stressful. She would inevitably end up spending the first half of the day at the hospital every other day which was difficult to balance while holding a hectic job. “The constant injections, the commute through Bengaluru traffic became taxing,” she admits.

When the cycle failed, Ramesh says that this took a higher emotional toll on him, and Sudha agrees. “It was as though we had lost one chance of having a baby. You do get hopeful also because you’re putting your mind and body through so much,” Sudha admits.

The IVF process is indeed taxing on the woman’s body. Dr Sunil Eshwar, consultant infertility specialist at Motherhood Hospital in Bengaluru, explains that they usually spend at least two months observing and studying the woman’s natural hormonal cycle and health indicators before deciding on how to regulate it before the IVF cycle begins. Essentially, a woman’s hormonal cycle is regulated and manipulated through medication, including hormonal, to create an artificial one so that doctors can track when she is going to get her period and when she will be ovulating. Once the treatment is started, the women TNM spoke to reported receiving injections, including hormones, every day to every other day.

10 to 15 eggs are extracted from the woman per IVF cycle – generally this happens after putting her under anaesthesia, though it does not have to be a surgical procedure. They are fertilised with the partner’s sperm and then cultured for 3-5 days to become an embryo. The embryos are implanted in the woman’s womb, and further treatment is given to increase the chances of pregnancy. In case the quality of eggs is not good, using a donor’s eggs is suggested. The same applies for the sperm.

Some time after their first failed IVF cycle, Ramesh got an opportunity to work in the US, and his company offered to cover costs for another round of IVF if they wanted to try again there.

In their first cycle in the US, the couple had three embryos, and Sudha got pregnant too. Six weeks into the pregnancy however, she lost the foetus to a miscarriage, leaving her feeling devastated.

Her anxiety after this carried into their third and final successful IVF cycle too. They returned to India when Sudha was three months pregnant. Though she was in the care of her parents, she was constantly monitoring herself - Did she get up too quickly? Did she move too abruptly? Why hadn’t she felt the baby move in so long? “I was getting scans after scans to ensure that the baby was fine. This did not let up until she was born,” Sudha says.  

Inadequate preparedness, counselling

Many couples have reported being blindsided about what to expect beyond the technical details of medicines, symptoms and the outcome. While there is a lack of such research in India, a study published in 2000 that surveyed over 8,000 couples in the US and Australia found that while 90% of them were aware of IVF, less than one quarter of them knew about the success rate.

“There is a lot that people don’t tell you about the process,” says Bengaluru-based Rashmi, 36, who found her state of mind significantly affected by the heavy intake of hormones during her IVF process.

“You are injecting yourself with hormones and that does play havoc with your emotional and psychological wellbeing. In fact once, when the treatment was over, one day I woke up, and after a long time I felt like myself again. I told my husband that I was ready to join the land of the living,” she laughs.

When Rashmi’s first IVF cycle at 33 wasn’t successful, they went through a second, because they were told that they should go through at least three cycles to have the best chance of success. When that didn’t result in a pregnancy either, Rashmi and her husband decided to stop. Like Vishakha, she had only heard of success stories.

“From the time we decided to try having kids, we never considered the possibility that it might not succeed,” Rashmi says. 

For this reason, Dr Sunil insists that couples take some time to emotionally and psychologically prepare themselves for what is to follow. “I tell them to just take a month or two to fully understand what this could entail. This also is the time when the doctor advises patients work on improving overall health and lifestyle. This also helps improve their egg and sperm count,” he says. He believes that it is important for a couple to visit a counselor or psychologist to emotionally prepare them for what is to come.

It is mandated that all IVF clinics have a counsellor to make women and couples aware of what they are getting into, says Dr Ashlesha Bagadia, a Bengaluru-based psychiatrist with specialisation in perinatal psychiatry and women’s mental health. However, this does not seem to be standard practice. Most couples that TNM spoke to were not counselled beyond how much IVF will cost, and what sort of symptoms and physical manifestations they can expect.

“A lot of doctors themselves have not gone through IVF. So, if at all they provide counselling, it is limited to warning you about the disappointment you might feel if it doesn’t work. When you’re going through one cycle, even if you try to be optimistic by telling yourself that there is one or two more to go after this, it’s hard. A lot of it is not just normal anxiety and sadness – it’s hormonal too,” Rashmi says.

For Rashmi, the toll on her mental health was far worse than she anticipated, and she ended up going to therapy, though Dr Ashlesha also reveals that most couples hardly seek out mental health practitioners on their own.

The couple took a break from trying to have children and tried to move forward in other aspects of their life. However, when they moved to Mumbai for work, they decided to try IVF again. One more failed IVF cycle later, the couple decided to consult a renowned specialist. That’s where they achieved a breakthrough.

“He presented us with a lot of stats – how many of the procedures they had done had resulted in pregnancies, how many of those had resulted in miscarriages and live births respectively. It may sound cold, but it was a tipping point for me – I felt for the first time that a doctor was not being opaque about how successful or unsuccessful IVF is,” Rashmi observes.

It was finally the second cycle with this IVF specialist (the fifth one in total) that was successful. Rashmi delivered a baby girl four months ago.

The disproportionate pressure on women

No matter how supportive male partners are, they cannot share the burden of the physical and psychological effects that the treatment itself on the woman – the frequent injections, the nausea, the weight gain, the mood swings, to name a few. And since they are carrying the child, the success or the lack of it can lead to some amount of self-doubt or guilt.

Sudha, despite her rational demeanour, wondered if she had done something to cause the miscarriage. “I kept saying to the doctor, “I did not do anything wrong. I took all the medication. How did this happen?” It took a lot of counselling from them to convince me that my actions did not cause the miscarriage,” she shares.

Similarly, Vishakha felt extremely lost when she did not get pregnant after the first round of IVF. “It was like a dark cloud descended on me. I thought, why me? What did I do wrong? Two weeks ago, I saw two lives (the embryos). I didn’t understand why they didn’t choose me.”

After this, the feelings of excitement she felt in her first attempt were replaced by trepidation, and even more desperation. Vishakha and Madhav had put all their savings into the second IVF cycle. Things looked hopeful too – instead of two, they had four embryos this time. However, after Vishakha experienced bleeding a few weeks after the implantation, they were told that she had gotten her period.

The couple was so disappointed and traumatised that they decided they would not have kids. 

“However, in 2014, nature gave us a surprise,” Vishakha gushes. The couple was able to conceive naturally, and is now parents to twin boys.

Vishakha’s story had a surprising but happy ending. But for Preeti*, her experience at the hospital she went to left her scarred and too traumatised to attempt IVF again. 

Preeti had endometriosis, a condition where the tissue that is supposed to line the inside of one’s uterus, grows outside the uterus and in some cases, on other organs. It often results in lower abdominal pain, extremely painful periods, and difficulty in conceiving, among other things. Preeti was wrongly told, like many women with endometriosis are, that getting pregnant would alleviate her condition. However, with pregnancy and the lack of periods for nine months, it merely suppresses endometriosis symptoms. There is no guarantee that they will not return after childbirth.

In 2012, Preeti and her husband Sathish* consulted a Chennai hospital that is well known for IVF, who told them that there was a 70% chance of Preeti getting pregnant. At the end of Preeti’s first six-month-long cycle, they had six embryos. “However, after it failed, the hospital changed their tune and told us that there was only a 20% chance of success,” Sathish tells TNM.

A year later, Sathish wanted to try IVF again, much to Preeti’s reluctance. “Till that time, I only had knowledge of the insensitive hospital staff. One day, Preeti finally opened up and told me how it was to spend six hours in the hospital almost daily, standing in line with other women without your pants to take the scan, and the effects of the continuous hormone intake. She told me that when the embryos were implanted and she was partially sedated, the hospital staff mishandled her.”

Sathish decided that it wasn’t worth putting his wife through the experience again. “I realised that I was just going to lose money, but she was going to have to go through the emotional and physical labour all over again,” Sathish narrates.

Financial costs

The cost of IVF can run into lakhs of rupees. For the most part, this ensures that only people from a certain economic background and above can opt for it. However, the cost varies significantly, and points to a lack of regulation and scope for financial exploitation.

Vishakha’s first cycle IVF cost Rs 3 lakh, that they paid with the help of a loan that Vishakha took from her PF. Sathish and Preeti spent a total of Rs 6 lakh including their first cycle, and the second one which they did not finish. However, Sudha and Ramesh spent Rs 6 lakh on one cycle alone. The cost for Rashmi’s five cycles was much cheaper in comparison - around Rs 6.5 lakh in total. She thinks this is because she learnt to administer the injections she had to take on a regular basis herself and did not go to the hospital every other day in four of the cycles. Sudha and Ramesh’s IVF treatment in the US cost way above Rs 25 lakh, but since his company covered it, it didn’t burn a hole in their pocket.

While the costs hit the savings of some of the above couples, they were all in a position to recover that money in a few months.

Dr Sylvia argues that this reveals scope for exploitation in the IVF industry, especially with almost no regulation of ART in India except the rather problematic Surrogacy (Regulation) Bill passed in 2018. The Draft Assisted Reproductive Technology (Regulation) Bill 2017 is yet to be passed, and is not without criticism.

She adds that “an incentive-based system in many places leads to doctors being likely to earn more if they recommend certain procedures; or they are eligible for full salary if they see a certain number of patients or perform a target number of procedures. If doctors were given salaries based only on their seniority and qualifications, this wouldn’t happen.”

However, Dr Kirthika argues that IVF practitioners must also practice self-regulation. “They are required to register their clinics. There may be some who are not doing it, but I don’t think it’s too many,” she says. 

Because of the lack of regulation, IVF clinics are not required to reveal numbers to the government on how many successful treatments they have done, how many resulted in complications, how many in miscarriages and so on. This further creates a lack of transparency, and the vulnerable couple has little choice but to believe the word of the doctors on their success rates, which vary from clinic to clinic.

(Inputs from Dr Nimeshika Jayachandran)

*Names changed 

Also read: Nature and nurture: How adoptive mothers see motherhood

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