In September 2020 Francesa Hockham had a miscarriage. She was shocked when it happened and so was her husband because they didn’t know they could get pregnant naturally. The first they knew of the pregnancy was when they lost it. Francesca, a charity support worker from Milton Keynes, is now 40. She had been going through IVF since she was 35 after getting pregnant naturally proved to be a challenge.
In total, Francesca has undergone two rounds of IVF. During that process she has had 26 eggs extracted, 10 of which were fertilised and seven of which made it to the embryo stage. It has been a physically and emotionally draining process which has taken a toll on her body and mind.
This, in no small part, seems to be because she has polycystic ovary syndrome (PCOS) and endometriosis. The former she discovered while taking hormones during IVF which are intended to increase egg production because she suffered from a condition known as ovarian hyperstimulation syndrome (OHSS). The latter she discovered after her first miscarriage and suspects may have been exacerbated by the high doses of hormones she has been taking.
OHSS is a complication of IVF which happens to some women. It occurs when ovaries are overstimulated by the hormones involved in IVF which causes too many eggs to develop. The ovaries then become very large and painful. According to the NHS, symptoms include pain and bloating, feeling and being sick, shortness of breath and feeling faint. Although Francesca’s case was not severe and life-threatening, it can be.
We put all our trust into the clinics and never questioned their decisions.
francesca, milton keynes
"I had abdominal swelling due to fluid build-up," Francesca explains. "It was very uncomfortable and I also had nausea and heartburn. Physically and mentally I was just exhausted. Emotionally I was also very down as I felt my body had let me down. I felt guilty and frustrated."
"Part of me also questions whether my endometriosis was made worse due to the drugs from the IVF process," she adds.
Statistics from the Human Fertilisation and Embryology Authority (HFEA), the fertility industry regulator that is required to record all incidences of OHSS, suggest a third of women undergoing IVF will develop mild OHSS. However these statistics may not be accurate because, as the HFEA notes, clinics are required to report all cases of ‘severe’ or ‘critical’ OHSS but ‘mild’ or ‘moderate’ cases do not currently need to be reported. They also fear that OHSS may be under-diagnosed by fertility clinics, meaning that some cases never make it into the official data. Since 2001, two women are reported to have died as a result of OHSS, according to the Office for National Statistics (ONS).
This is concerning to those who embark on IVF because of fertility issues but also because the number of women opting to freeze their eggs continues to rise exponentially. Recent data from the HFEA shows that the number of egg storage cycles has increased rapidly, rising from 1,500 cycles in 2013 to just under 9,000 in 2018. This is a staggering increase of 523%, which means that the number of women freezing their eggs and therefore volunteering to submit themselves to the high doses of hormones involved in fertility treatment has increased fivefold.
Unless it is provided by the NHS due to fertility issues, fertility treatment is costly in the UK. On average – including storage and transfer fees – it can cost as much as £7,000 to £9,000 per cycle when provided by a private clinic. It is a lucrative business. Now, experts are questioning whether the emotional and physiological costs to women are being properly factored in.
Professor Geeta Nargund is the lead consultant for reproductive medicine at St George’s Hospital London and the medical director at CREATE Fertility. She is a pioneer of milder IVF treatments and has long campaigned for the fertility sector to re-evaluate its approach to high dose fertility treatment aimed at high egg-collection numbers. She is calling for a more holistic approach to fertility treatment which factors in not only success (in terms of live births) but also the wellbeing of women who undertake it.
"Some women are still suffering unnecessarily during IVF treatment," Dr Nargund explains. "It is the quality and not the quantity of eggs retrieved that is most important in IVF. I passionately believe that clinics should prioritise the health and wellbeing of women undergoing fertility treatment."
As Dr Nargund sees it, the way success is measured in IVF treatment urgently needs to be reveiwed. In a recent paper on the subject she wrote of a "uni-dimensional approach" to success which does not take into account the avoidance of complications like OHSS as well as "better health outcomes for the woman and her baby". As things stand, success is generally defined by the live birth rate. Around a third of women under 35 who undergo IVF go on to give birth.
"The current measures of success are not only incomplete but also short-sighted," Dr Nargund explains in the paper. "It is resulting in suboptimal clinical practice. Like any other medical intervention, any protocol used during IVF treatment should aim at optimising a well-defined indicator of ‘success’ in relation to safety, burden of treatment and cost for anyone who undergoes IVF."
In conventional high-dose IVF, a woman is first given injections of a drug (often Buserelin) to suppress her ovaries, causing temporary menopausal symptoms. She then takes gonadotropins, such as follicle-stimulating hormone, in order to produce more eggs. The duration of injections is longer and the hormone dose is significantly higher than in low-dose programmes.
A woman normally produces one egg per cycle. High-dose stimulation can mean she could produce 20 to 30 eggs, sometimes more. By contrast, when receiving mild or low-dose IVF, a woman’s ovaries are not suppressed at the start and the dosage is aimed at producing less eggs, likely around eight to 10 eggs.
Dr Nargund says it is putting women’s health at risk. More than that, she has recently published new research which reveals that a higher number of retrieved eggs doesn’t actually improve a woman’s chances of success, with eggs often discarded. She adds that "live birth rates have shown to be equivalent when using mild stimulation IVF."
Francesca wishes she had known this going into fertility treatment. "I always questioned why we had so many eggs collected but it didn't mean we had a successful pregnancy. We could have kept going for more attempts but what kind of a life would that have been for us?" she reflects. "Some people keep going for years and get into debt and push their relationships to the limit and at the end they still have no baby."
Quality and safety have got to be at the forefront of treatment in IVF.
dr geeta nargund
"I think my feeling after we finished the IVF was conflicted," she continues. "The clinics were eager to get high embryo reserves to 'give us the best chance' as they put it but, at the same time, the cynic in me thinks they do see you as a bit of a cash cow and more treatment cycles and more eggs mean more profit."
Had she known all of this, Francesca adds that she might have taken a different approach. "It seems simple – the more embryos, the more chances you have in the future – but it’s not," she says. "You only need one good quality embryo to be successful. [Fertility clinics] don't take into account the emotional, financial and physical toll that the process and medication have on you and your relationships. We put all our trust into the clinics and never questioned their decisions."
Like Francesca, a 33-year-old fitness instructor from London (who wished to remain anonymous) experienced OHSS while embarking on fertility treatment for egg freezing during the pandemic. She is currently single and wanted to make sure she had eggs for the future if she needed them. In total she spent around £7,000 at a private clinic.
"I was anxious all the time and in agony," she explains. "I now know that I have polycystic ovaries but the clinic didn’t check for this at the start of the process, which I think meant I was more susceptible to overstimulation."
"I found the whole process really daunting. I often didn’t understand what they were saying to me and I didn’t know which questions to ask," she adds.
Dr Nargund and Professor Fauser, another fertility pioneer, recently published an editorial which notes that there is emerging evidence of other risks associated with high-dose IVF, notably to the children that may result from it. "Although far from conclusive yet, it should be noted that several preliminary reports suggest a relationship between the extent of ovarian stimulation and pregnancy complications and even blood pressure in IVF offspring," they explain.
Whether high-dose IVF should continue to be the norm is a pressing question. It’s more relevant than ever, according to Dr Nargund. "There is an increasing proportion of women who undergo ovarian stimulation for IVF treatment who are young, healthy, fertile women," she explains. "Many of them will have a partner with male-factor subfertility, are trying to conceive as single women or as same sex-partners to start families or are only freezing their eggs for possible future use so the impact of the treatment on them needs to be properly assessed."
High-dose IVF is still widely used in the UK and the US. However Dr Nargund says that lower dose or 'mild' IVF is increasingly the norm in Japan, South Korea, Canada and parts of Europe such as Scandinavia and the Netherlands.
"The view that ‘more is better’ in IVF treatment is misguided and must be shifted," Dr Nargund adds in no uncertain terms. "Mild IVF treatments, which use fewer drugs and are aimed at collecting fewer, higher quality eggs, have equally as good success rates as high dose treatments aimed at high egg collection numbers."
Francesca wishes more people talked about the alternatives to high-dose IVF. "Minimal stimulation would be cheaper as there are less drugs involved and the physical impact on the body would be less," she reflects. "I think more research should be done into it."
While some people (understandably) spend tens of thousands of pounds and years of their lives on IVF, Francesca says she won’t try again. There were periods when she couldn’t go out and socialise because she felt so terrible and although she finds the prospect of not having children heartbreaking, she doesn’t want to put herself through it again.
Moving forward, Dr Nargund is calling for more research and more rigorous collection of data. "We need data on the drugs and dosages administered to women, not only for audit purposes but to assess the safety and effectiveness of drugs in IVF," she says. "We need to give that information back to women, they deserve that."
"Quality and safety have got to be at the forefront of treatment in IVF," she concludes. "We should be trying to make it less intensive and striving for higher quality outcomes and better safety."
The British Fertility Society did not respond to Refinery29's request for comment.