Why aren’t doctors talking about ovarian hyperstimulation syndrome, which can be potentially fatal to women undergoing IVF?
You’ve decided, after a lot of thinking and rethinking, to try and have a baby through in vitro fertilisation (IVF). Before this, you have unsuccessfully tried intra-uterine insemination (IUI), dealing with extremely excruciating progesterone injections, certain that IVF will be worse.
Then you hear that progesterone injections have been replaced with less painful suppositories. So you meet a reputed IVF doctor. You tell her explicitly that you are only thinking of doing this because it won’t have painful injections. She assures you that the only injections you’ll have to bear are 11 days of a very thin needle in your stomach that doesn’t really hurt. You think you can handle that, and decide to go ahead with it.
This is where the problem begins.
From the second day, the doctor begins to prescribe three injections — one on your stomach, one on your hip, and one on your thigh. You look at her, and she looks at you, and she knows she hasn’t been honest with you. There is silence. After all, you had agreed.
This is only the beginning of 34-year-old Arathi Krishnan Chhetri’s horrifying experience at a well-known IVF clinic in south Bangalore.
Twelve days later, Chhetri, who works as a learning and development consultant, spent 11 days in hospital. Four of those days were spent in an intensive care unit (ICU), because she had developed ovarian hyperstimulation syndrome (OHSS). She couldn’t lie down and fluid retention made it difficult to breathe. Her 28-inch waistline, became 68 inches. Chhetri had released 14 eggs instead of the five she was expected to. Almost in fascination, doctors told her that she had to down fluids or her ovaries would become bigger than her stomach.
But they hadn’t told Chhetri that OHSS was an explicit risk of IVF before the procedure. She hadn’t heard of it until she was in OHSS.
In another case of OHSS in Delhi in early February 2017, a 23-year-old woman died during an egg donation procedure at an IVF clinic. Her severely hypertrophied ovaries had caused internal bleeding. The police were trying to determine how much hormones she was injected with.
What is Ovarian Hyperstimulation Syndrome (OHSS)?
For as long as IVF has been around — it’s a 39-year-old technology — ovarian hyperstimulation syndrome (OHSS) has been the industry’s greatest nightmare. But you don’t often hear about it.
The fertility drugs that are used to stimulate the ovaries, particularly human chorionic gonadotropin (hCG, a hormone produced by the placenta after implantation), sometimes tend to overstimulate them. The overstimulation causes the development of too many egg sacs, making the woman’s ovaries swell and become painful, leading to a build-up of fluid in the body. Severe OHSS can cause difficulty in breathing, blood clots, kidney problems, and internal bleeding due to the rupture of a cyst.
According to statistics, one in three women undergoing IVF usually develop mild symptoms of OHSS. Moderate symptoms usually affect one in 25 women, and severe symptoms affect one or two in 100 women.
Women at the greatest risk of developing OHSS, usually have polycystic ovarian syndrome (PCOS), and low body weight. In most severe cases, as in this and this one that have been extensively described, women pee very little. They are usually asked to consume six to eight litres of water, but it’s often not possible. The only possible solution to the huge build-up of fluid in the body is the abdominal tap—a procedure to drain out the excess fluid from the abdominal cavity (between the abdominal wall and spine).
Are women told about OHSS before they begin IVF treatment?
Let us for a moment forget about the doctors explaining OHSS as a risk before the procedure, and getting Chhetri’s informed consent.
OHSS was vaguely explained to Chhetri three days before her egg retrieval procedure. Her doctor said she was at risk. She had released 14 eggs instead of five. After the egg retrieval procedure, when her doctors knew she was suffering from OHSS, she was only told that the embryo transfer couldn’t be done until her ovaries “returned to normal size.” Then she was sent home with the simple instruction: “Drink six to eight litres of water.” But she was never told what to expect.
That night, Chhetri had severe bloating and a terrible cramp she couldn’t explain. When she went to the IVF clinic early the next morning, doctors said she hadn’t drunk enough fluids. “They started pushing fluids down me even though I said it was rising up my oesophagus. They didn’t tell me what’s going on,” Chhetri says. They shoved soya milk, ORS, and soup into her, and every time, she threw up. “You just have to make up your mind and do this,” one of the doctors said.
Soon after, Chhetri was told they would move her to another hospital. “That’s when it hit me like a thousand bricks that they didn’t have the equipment to deal with this,” she says. Almost unbelievably, while she waited for the ambulance, the doctor asked if she had had “exposure” with her husband after the egg retrieval, or if she is pregnant already. Never mind that it was a minor surgery. “You tell me if I’m pregnant,” Chhetri said incredulously. The doctor only said they didn’t know, and that her HCG levels were so high.
In the new hospital, Chhetri was sent straight to the ICU. Over the next four days (the IVF clinic head never came to meet her), her bloated stomach was like stone. She passed only 50 ml of urine a day, couldn’t breathe, and her oestrogen levels had reached 8,000 picograms per millimetre (normal is between 50 and 400). Her creatinine and liver levels were through the roof and doctors worried her kidneys would fail. They did an abdominal tap, draining 1,500 ml of fluid from her body. That was when she took her first proper breath. When she was finally able to stand, the remaining fluid made her legs swell, and she had to wear tight socks to reduce swelling and prevent clots.
Chhetri had been to three IVF clinics in Bangalore, and one in Dubai, where she used to live. None of these clinics had mentioned OHSS. “The experience is very unique to each individual,” Chhetri was told at pre-counselling sessions that laid down the treatment’s milestones. She wasn’t presented with a spectrum of women’s experiences. “We only talked about the good sides. Doctors never said pregnancy could be difficult. Women I know spent nine months in bed during their pregnancy after IVF, but they told me this after I told them what I went through. It’s as though once the baby comes, none of this will matter. That’s bullshit.”
“The default risk of any fertility treatment is OHSS. Even with a simple Clomid (a fertility tablet), this is the inherent risk. There’s no way of telling who will develop it,” Chhetri says her regular gynaecologist (who had told her informally that there was nothing wrong with being childless and to stop putting her body through IVF treatment) told her after she was better. But back in the IVF clinic, Chhetri says the doctors were always playing on the edge, waiting and hoping.
Was it only this reputed clinic that ‘forgot’ to mention OHSS? Do women who have undergone OHSS know about it?
Charlotte Pinto, who was 32 years old when she underwent IVF treatment in Dubai 20 years ago, says the procedure can be stressful, causing emotional upheavals. She was told to be ‘careful’ during her pregnancy, but was never informed about side effects. She didn’t have a counselling session either. Revathi Kumar* who underwent IVF three years ago, had a difficult pregnancy. “I wasn’t told to expect to have mild bloating [a symptom of mild OHSS, she realised later], or to be in bed for two months of my pregnancy,” she says. “But I have a son now,” she adds after a pause.
On the other hand, another 32-year-old woman (who didn’t want to be named) said that a Bangalore clinic she went to was nervous about OHSS and warned her throughout. The only thing the clinic didn’t want to discuss were her extreme mood swings. This was in contrast to the first IVF clinic she visited. There, when she asked the doctor about IVF side effects, he only sneered and said, “What do you think will be the side effects?” She left immediately.
When this seems to be happening in well-known private clinics, what about lesser-known places?
Gita Aravamudan, journalist and the author of Baby Makers: The Story of Indian Surrogacy, also writes about OHSS in her book. She remembers a Nepali woman in Mumbai she interviewed, who was gaunt and had lost all her hair when Aravamudan met her. She had been hyperstimulated and not been treated for severe OHSS. “OHSS is something that all doctors know about, and there are milder hormones that can be given,” she says.
It isn’t only surrogacy. Even egg donors run this risk. “View it as a commercial transaction. If you’re going to pay the egg donor Rs 25,000, then you need to optimally get 5-6 eggs,” Aravamudan says. Here, she points to a terrifying detail: Women are often hyperstimulated when they are fair-skinned and considered beautiful, because their eggs are in higher demand.
When Chhetri was finally out of the hospital, she had to revisit the IVF clinic for excruciating period cramps soon after. She had to take four meftal spas [tablet prescribed for period pain] in 24 hours, instead of one. This time, the head of the hospital — the doctor she had gone there for — met her. When Chhetri and her mother asked her why she never mentioned OHSS, the doctor shrugged off responsibility. Instead, she said Chhetri had signed the consent form. But even there, Chhetri doesn’t remember OHSS being mentioned.
What do doctors say?
Mandeep Kaur, a doctor at Nova IVI, Jalandhar, a fertility treatment centre, says that the incidence of OHSS used to be high a long time ago, but now they see one or two mild to moderate cases a year. The reason for the decrease has been the introduction of the antagonist protocol.
In the antagonist protocol, doctors have the option of giving an agonist trigger if the patient is young and has produced around 14-15 eggs. The trigger suppresses gonadotropin. Previously, only using the HCG trigger could result in the higher incidence of OHSS. “The idea is that you can judge beforehand whether a patient is likely to have OHSS. If it looks like she is, we give the agonist trigger,” Kaur says.
According to Kaur, this is the crucial decision doctors must take. But what she says outright is that no doctor or clinic reports OHSS. “The reason is that it brings disgrace to the centre at which you’re working. We claim that we have OHSS-free clinics. But the kind of OHSS patients get has been very manageable so far,” she says.
According to data, around 1,00,000 families demanded IVF treatment in 2015, but the number is expected to rise to 2,60,000 by 2020. Reportedly, India’s IVF market in (estimated at Rs 43 billion in 2015) is expected to hit Rs 80 billion in 2018. In this growing industry, when we tell Kaur that patients we spoke to hadn’t been informed about OHSS, she says that patients must choose clinics well, and that most complications arise as a result of poor clinic choice. Since the industry isn’t regulated, Kaur says that patients must be more careful and aware of the number of embryos put in them. “Patients must go to a good centre with a qualified doctor.”
Chhetri finds it strange that no acquaintance ever indicated the complications that could arise. She attributes some of this to women not wanting to talk about infertility— nearly 10-15% of married couples in India are said to suffer from infertility. “We need to have the courage to say infertility is fine without an axe hanging over our heads. I realise now it’s not a big deal to respond to people who carelessly ask you why you don’t have children. I can say I’m having trouble,” Chhetri says.
One woman even told her that a “woman’s got to do what she has to do”. A feeling shared by the medical establishment, which has well-documented bias about the comfort, pain and consent women can expect.
Even while Chhetri was about to go in for her abdominal tap, she remembers her IVF doctor telling her over the phone, “You’re going to be fine. You will have the baby.” The doctor seemed to have easily forgotten about informed consent despite it being their obligation to explain to a patient the treatment and its risks.
This has taken a lot out of Chhetri and her family. The clinic has eight of her embryos that she wants nothing to do with after she almost lost her life. As she says, “No woman should have to prove that she’s strong enough to do this. IVF can take a massive toll on your health and it’s not all roses, hope and laughter. Women need to be able to choose what they want fully knowing the aspects involved.”
By arrangement with The Ladies Finger.