The dark side of IVF that no one tells you about

The reality of IVF, underscored by all kinds of upheaval, is far from the rosy picture that many perceive 

Unaltered for years, an age-old way of thinking is suggestive of having kids as a way to lead a happy life. Furthermore, motherhood has been established as a natural extension of womanhood. When you join each dot (read: social factors), the obsession with parenthood starts to make sense. However, over the past few years, there has been a rampant upward surge in infertility in India, especially in the urban areas; of the couples suffering from infertility worldwide, 25 per cent hail from India alone. This explains why assisted reproductive services such as IVF (in-vitro fertilisation) are in demand right now. 

Endorsed as a miraculous solution, IVF has become a go-to for couples who are actively trying to become parents. So much so that the IVF market size in India, valued at US$883.50 million in 2022, is estimated to surpass US$4,667.80 million by 2032, at a CAGR of 18.08 per cent between 2023 and 2032. These numbers are indicative of a larger societal proclivity—the need to conceive a child in your own flesh and blood. “I got pregnant thrice; unfortunately, those pregnancies never saw the light of the day. Since I wanted to experience the joy of being pregnant and delivering a baby myself, I decided to give IVF a try,” shares Nimisha Limaye, a Mumbai-based PR professional. Perhaps, this is what drives most women to IVF clinics. However, the reality of IVF, underscored by all kinds of upheaval, is far from the rosy picture that many perceive. 

The dark side of IVF

The reasons to opt for IVF range from infertility to a ticking biological clock; the process, however, is largely the same. “In the [IVF] process, eggs are retrieved from a woman’s ovaries and fertilised with sperm in a laboratory dish. The resulting embryos are then transferred back into the woman’s uterus,” explains Dr Abhishek Mangeshikar, gynaecologist, founder and director, the Indian Centre for Endometriosis (ICE). However, it isn’t as simple as it may sound. “It also involves the woman getting injections for about 10 days before we retrieve the eggs through a small procedure called ovum pick up (where we suck out the eggs using a needle, just like blood collection),” says Dr Rohan Palshetkar, professor, Dept of OBGyn, DY Patil School of Medicine. The precursor phase is where all hell breaks loose.

“It was a very unpleasant experience,” shares author and journalist Jasreen Mayal Khanna. “I was put on some pill the day I started [my IVF journey] to regulate my period so everything could go according to the schedule —to make it cost-effective and -efficient for hospitals, they do all retrievals in a day. The pill gave me bouts of acidity. Eventually, I was taking 16 pills a day, and injecting myself in the stomach. IVF involves mental, physical and emotional pain. I opted for therapy for the first time during IVF.”

Priyanka Prasann, a 35-year-old Mumbai-based fashion designer who went through over three rounds of egg retrievals and eight embryo transfers, found IVF extremely challenging too. “I opted for IVF as I couldn’t conceive naturally. It was an emotionally and physically exhausting experience. Too many hormones were consumed and injected, which cost me around 5-6 lakh rupees.”

Bengaluru-based sustainability consultant Shruti Singh signed up for IVF with a positive and realistic mindset, yet she had to grapple with what was coming. “We knew the success rate wasn’t that great, and that this wasn’t a guaranteed process. We were really focused on the outcome, with all our hopes pinned on it. Slowly, one cycle after the other, it began to take a toll on my body, followed by my mind, and then our relationships,” she shares. “Nobody prepared us for the emotional rollercoaster this was going to be. While I had researched medical parameters and knew the technical processes, the impact on our quality of life and relationships wasn’t something we had anticipated.” Singh also highlights how IVF is indeed work and actually draws a lot from a woman. “It’s a lengthy process that requires patience and the support of family members. Discussing it at the workplace was challenging, so we kept it under wraps. Managing frequent trips to the hospital every few days was hard. Overall, the process was stressful, emotionally exhausting, and filled with anxiety and disappointment from failed cycles.”

Dr Divya Vora, obstetrician and gynaecologist, admits that IVF can pose physical challenges like hormonal fluctuations, multiple pregnancies, and ovarian hyperstimulation. “Mentally and emotionally, the process may lead to stress, anxiety, and depression due to the intense nature of treatments, uncertainty, and potential disappointments. Financial strain, relationship stress, and ethical dilemmas associated with IVF can also impact well-being,” affirms Vora. In fact, things can get complicated for someone with existing health conditions. 

Dr Amodita Ahuja, a New Delhi-based gynaecologist, says anyone who has PCOS or endometriosis might have an ovulation or egg formation disorder and hence may require higher doses of hormonal injections, sometimes leading to OHSS or ovarian hyperstimulation syndrome. “Due to OHSS, the ovaries can get triggered and form 10-15 eggs at once leading to fluid shift from inside the blood vessels. This could cause thickening of the blood and therefore the formation of multiple clots.” Vora adds, “PCOS may lead to irregular ovulation, requiring precise hormonal management during IVF. Meanwhile, the effect of endometriosis on pelvic structures can affect success rates drastically. Tailored approaches and close monitoring are crucial for addressing these conditions and optimising the chances of a successful IVF outcome.” 

Furthermore, not many doctors will explicitly tell you this, but (repeated) IVF cycles have been linked to ovarian and breast cancer—sporadically— because perhaps no one wants to splinter a million-dollar business in India. “A patient going through any organ transplant is always at a higher risk of [forms of] cancer,” begins Dr Puneet Bedi, a New Delhi-based gynaecologist, practising for over 40 years. “IVF not only puts you at risk of ovarian and/or breast cancer but also kidney failures due to ovarian hyperstimulation. I can say that majority of the IVF clinics, and the performing doctors, are using terribly high levels of hormones for quicker results.”

Dr Vaishali Joshi, senior obstetrician and gynaecologist at Kokilaben Ambani Hospital in Mumbai, states, “There is a theoretical risk of ovarian cancer due to drugs used to hyperstimulate ovaries to yield multiple eggs. Going through repeated attempts of IVF cycles can increase long-term risks of ovarian cancer.” Here’s some data to testify to their theories: Most women who had received more than six cycles (of HCG or HMG) in the IVF process, are generally at an estimated 40 per cent risk of developing breast cancer, especially those with a family history of the same.

Why has IVF seen a surge, despite the many woes?

“IVF has turned into something you opt for if you can afford it, not necessarily need it,” says Bedi. “IVF is actually the last choice of treatment when we have exhausted all other options,” says Ahuja, upon being asked if one should resort to IVF the minute they face fertility roadblocks. “I suffered three ectopic pregnancies in the last two years and my health was affected. Later, my fallopian tubes were removed and IVF was the only choice left for me [in order] to conceive,” shares Limaye. 

There are other options too, should you wish to conceive naturally, sans the toiling with IVF. Case in point: Intrauterine insemination (IUI). It’s common to wonder why people who wish to embrace parenthood, without an agenda to conceive personally, don’t often explore surrogacy or adoption. “You always believe that you want to try the closest to the natural process first—that’s how the doctors propose it as well. Once you are in the cycle, you think the next one will bring success and you continue with it. In an Indian family setup, where couples often live in joint families, the conversation around IVF itself is a difficult one. Surrogacy and adoption are conversations we still struggle to have,” shares Singh. Khanna, who wasn’t sure of being a mother, to begin with, didn’t consider adoption as her first choice. “I thought having a biological child could spark the missing motherly instinct and prompt me to be a good parent. It’s not like I didn’t want to adopt, but I was afraid that I wouldn’t be able to do justice to an adopted child. In hindsight, I should have opted for surrogacy, but I don’t think anyone in my family would have supported that decision.” 

Surrogacy and adoption aren’t always feasible options, even for those open to considering them. Data from the Central Adoption Resource Authority (CARA) indicates that over 30,000 prospective parents in India are currently waiting to adopt, while only 2,131 children are legally free for adoption. As far as surrogacy is concerned, the cost of just the treatment in India is anywhere between 18 to 20 lakh rupees, which excludes caregiving and healthcare costs. On the other hand, the government is doing everything in its capacity to make IVF accessible. “The Congress party has included In Vitro Fertilisation (IVF) as an area of focus in its manifesto for the Rajasthan Assembly election. Goa recently became the first Indian state to offer free IVF, Assisted Reproductive Technology (ART), and Intrauterine Insemination (IUI) services; Maharashtra is also looking into providing financial support to people from rural areas for IVF treatments under the Mahatma Phule Jan Arogya Yojana,” reports a piece from The Hindu.

Unfortunately, there are a bunch of success stories for every Amy Schumer, who shares the brash reality of IVF treatments with millions of people, which results in a rosy portrayal—and therefore, comprehension—of IVF. “The media often glamorises these treatments by showing the success stories as it helps clinics thrive on the emotional aspects of family fertility and women’s need to have better control over their reproductive decisions. The pain, sadness, failures and interpersonal struggles are mostly not discussed due to the attached stigma,” shares Ruchi Ruuh, a mental health expert and relationship counsellor.

“The topmost factor driving women towards IVF is social awareness; the buzz on social media, the Internet, and endorsements from celebrities has been key,” agrees Joshi. The media coverage of the first-ever successful human IVF on Lesley Brown, conducted by the pioneers of the treatment, gynaecologist Patrick Steptoe and physiologist Robert Edwards in 1978, also failed to report the 300-plus futile attempts that preceded it. 

“I wish I had other people who had given me the truth about the dark side. I wish I had doctors who were more empathetic, as well as cleaner and better-organised clinics,” says Mumbai-based travel writer Ayesha (name changed to protect identity). Along the same lines, Singh expresses, “I wish I had been fully informed about all of my options and understood how each one would affect me emotionally, physically, and financially. I wish I had been informed about the potential side-effects of the hormones on both the body and mind. If my husband and I had known what this journey would entail, perhaps we could have made different choices, or at least approached decision-making with greater clarity and preparation.”

One can believe that the “it-can-make-your-dreams-come-true” narrative about IVF has led to its commoditisation. “It is oversold, even to those who don’t need it—it’s a highly provider-driven industry” begins Bedi, “and societal norms and perceptions, and sometimes, the urge for a boy [child] has made this happen.” Ayesha, meanwhile, states, “The best doctors in Bombay are like factories. So forget the mental or physical challenge of the actual medical process, but dealing with them and the clinic is a whole other ballgame. On top of that, you feel like the doctors don’t listen to you or give you personal attention because you’re just part of the factory. In my first round [of IVF], I felt sick constantly; maybe because the medicines lowered my immunity or maybe because of the viral infections in the air. And, every time I said this to the doctor, he would affirm that there are no side-effects to the injections and/or medicines.” She adds, “Everyone’s body reacts differently. Some people put on weight, some don’t. I did, and felt awful the entire time—drowsy, low on energy, and not my usual self.”

It’s imperative to know what you’re signing up for

IVF does not always guarantee success, all the doctors echo concurrently. While Vora says that the success rates vary based on factors like age, overall health, and the cause of infertility, Joshi thinks that the number of viable eggs after thawing, age, and quality of embryos play a key role. “At the same time, one needs to balance these aspirations against the human body’s physiological ageing as pregnancy in very advanced maternal age ( >35-40 years) can have adverse long-term effects on women’s health and life expectancy, along with the well-being of the unborn child,” says Joshi. 

“Doctors often focus on the desire for parenthood rather than presenting all available options. Additionally, there is a stigma attached to infertility, and many individuals feel uncomfortable discussing it openly. I wish there were provisions for counselling and support systems before, during, and after the IVF process,” shares Singh. Thus, setting realistic expectations and acquainting yourself with as much as possible is incredibly crucial before subjecting your body, and your relationship, through the demanding process of IVF. IVF is also a double-edged sword in terms of the outcomes—miscarriages or the possibility of having twins or triplets being common polar opposite ones. “Some reasons behind miscarriages include issues with the quality of the embryo, chromosomal abnormalities, implantation problems, or underlying health conditions. IVF allows for the selection of embryos, but not all abnormalities can be detected in advance. Additionally, the age of the woman contributing the egg and the man contributing the sperm play a role,” adds Vora.

Before you opt for IVF, getting a fertility screening—for both men and women—is a good idea. “Fertility screening involves assessing reproductive health through tests like hormone evaluations, ultrasound, and genetic screenings,” informs Vora. “Women should consider it before choosing a fertility pathway to identify potential issues early. This helps in understanding their fertility status, optimising treatment plans, and making informed decisions about assisted reproductive technologies like IVF, and improving chances of success.” Fertility screening includes ultrasound tests to see the growth of eggs in the ovary, X-ray of fallopian tubes, and semen analysis too, apprises Ahuja. It’s also necessary to determine when to stop—this varies from person to person but is something that must consciously be discussed with the doctor. 

Lastly, seek every kind of help you feel you need to get you through this journey. Khanna, Singh, Prasanna and many women like them hope for more women to be vocal about their stories with IVF. Hanna Strömgren Khan, founder and CEO of brand incubator Bozzil, thinks that it’s important to have a partner or friends/family who are supportive of you during the process. “When you are undergoing IVF, it kind of feels like your life depends on it. You do so much for this one ultimate end goal—and you may or may not get there. No matter how many people have your back, it’s a very isolating experience, because it’s between you and your body. I wish people would judge less, and understand the full picture before giving unsolicited advice.” She furthers, “IVF is a wonderful option for many, but it may not work for everyone. These days, when someone is struggling to conceive, people are quick to tell you ‘Just do IVF’. But some people do not have that option—it’s expensive, and might not work for everyone.” This is why Ruuh encourages seeking professional guidance from fertility specialists and healthcare professionals. “Understand your options, the intricacies of the procedures, risk factors, and success rates. Meanwhile, maintain robust, honest communication with your partner about feelings, concerns, and expectations. It’s important that you join online or offline support groups to learn from the experiences of others. Such groups can be safe spaces to seek solidarity.”

The parley isn’t about anti-IVF versus pro-IVF; it’s whether you need it or not, and whether you’re prepared for it or not. “It’s a boon but not a happy pill you can swallow loosely. Do it only if you need it,” suggests Prasann.

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