Like many others, I woke up on Tuesday to the news that not only had doctors discovered "the cause of PCOS" they had also discovered a "cure". The article was everywhere on social media, quoted from various trusted scientific institutions such as The New Scientist (1) and IFLScience (2).
To understand the staggering emotional impact of this, you have to understand what it's like to live with severe PCOS. It dictates everything, from the way I look (central obesity, acne, excess hair), to how I feel (constant fatigue, generalised nausea, and headaches), to a host of comorbidities such as autoimmune diseases, food allergies, and severe anxiety and depression. And then there's the monthly visitor who likes to sock me in the uterus with a pain equivalent to kidney stones (and believe me, I've had enough of both to be able to make a solid comparison). There is literally no part of my life that this disease hasn't touched. I have made life choices based on having it, such as the decision not to have children and subsequent choice to have to find a life partner that also doesn't want children. To potentially have a cure for it rocks the foundations of everything I am.
My first reaction was to burst into tears. Like many cysters, I logged onto our communities (3)(4) to share the good news and celebrate with others. And then, once my emotions had settled down a bit, I downloaded a copy of the full scientific article to study the research that had been done and that was where it all started to unravel.
I would like to state that this is in no way a criticism of the scientists who did the research. It was a remarkably thorough study on their part and the results are astounding (and infuriating for reasons I will go into later). They did a great job and I'll be following the clinical human trials in detail later this year.
No, if there is any blame or fault to be assigned here, it is to the "respectable" news outlets in the scientific community going for exaggerated clickbait titles without any understanding of the subject or thought to the emotional damage they were doing to the 1:10 - 1:5 (5) women like me. At its root, it speaks to the wider staggering lack of knowledge about this disease in the scientific and medical community, a problem we have been struggling with for decades.
Because the truth is that they did not find the cause for PCOS; what they found is a contributing factor to the disease. And the "cure" they are trialing is, in fact, only a potential partially therapeutic medicine (so no different to the drugs we have now) to a majority of us and not a full cure.
The majority of women diagnosed with PCOS suffer from central obesity thanks to insulin resistance. I speak to those 'diagnosed' specifically because it appears that there is an inherent bias in doctors being more prepared to consider PCOS as a diagnosis when the patient is overweight because it's a "classic" symptom.
This is important to note because the part of the study that has been conveniently left out is that when they were comparing AMH levels in pregnant women, they found a significant statistical difference between lean normo- and hyperandrogenic women, but:
"No difference between normo- and hyperandrogenic obese women with PCOS was detected."
To provide some background, the study focuses on something called anti-mullerian hormone (hereafter AMH). The study determined that higher levels of AMH could be detected in pregnant lean (slim) hyperandrogenic women (with PCOS) than in pregnant lean normoandrogenic (non-PCOS) women. They deduced that these high levels of AMH were what caused the lean version of PCOS and managed to prove it in mouse communities by increasing the levels of AMH in pregnant mice and getting hyperandrogenic (i.e. PCOS type) offspring. They then managed to reverse the PCOS phenotype (hyperandrogenism) in adult mice by using a drug called Cetrorelix. They also used the drug in pregnant PCOS type mice, which went on to have normoandrogenic (non-PCOS) offspring.
This, as I mentioned earlier, is infuriating because the link between AMH and PCOS has been studied as early as 2002 (6) and I find it really hard to believe that it took 15 years for someone to consider what might happen if they tried to treat it. I'm also astonished it's taken this long to look at how AMH affects the fetus in PCOS women because papers were already being published back in 2015 (7) about excess testosterone during pregnancy being linked to a high prevalence of anxiety in the offspring of women with PCOS.
Furthermore, the 'proof' that AMH 'causes' the hyperandrogenic phenotype (PCOS) as a sole entity is slightly derailed by the fact that the study on testosterone in 2015 also managed to induce the hyperandrogenic phenotype by introducing testosterone into pregnant subjects. The 2015 study stopped short of speculating on a cure, which is possibly why it wasn't as sensational as the recent publication, but what it does tell us is that the disease is significantly more complicated than one root factor.
Back to the quote that I highlighted above, the scientists found no correlation between obese women with PCOS and high levels of AMH. This indicates that for women with insulin resistance and obesity as part of the metabolic syndrome with PCOS, (which is the majority, as mentioned above) there's an entirely different mechanism at work inducing the hyperandrogenic phenotype.
It also casts significant doubt on whether Cetrorelix would have any effect on obese women with PCOS if AMH is not, in fact, the "cause" of the disease in obese PCOS. There is a possibility it may have an ameliorative therapeutic effect on obese women with PCOS. It may be that it can reverse part of the syndrome and ease off some of the androgenic symptoms such as excess hair and acne. That would be amazing and I would be first in line for the treatment. The drug might completely surprise us and, for reasons that we can't speculate upon right now, totally reverse PCOS in obese women too. It's possible. It may be that there's some kind of cascade effect where altering the hormone pathways corrects the metabolic disorder, but we just don't know.
What we don't know could fill a book. We don't know the scope of the studies being carried out later this year—are they on pregnant women or are they trying to reverse the phenotype in adult PCOS sufferers? Are they trialing it on the lean PCOS types only, or both lean and obese PCOS types? Could a study in high testosterone levels during pregnancy with a testosterone blocker have the same or similar effects? If the new study is in pregnant women, will they track the children through childhood and puberty to ascertain their phenotype?
In any event, to claim that a cause and a cure for PCOS have been found is either grossly pre-emptive or downright false. Shame upon those who used it as a sensationalist headline to generate clicks.
(6) Cook, C. L., Siow, Y., Brenner, A. G. & Fallat, M. E. Relationship between serum Müllerian-inhibiting substance and other reproductive hormones in untreated women with polycystic ovary syndrome and normal women. Fertil. Steril. 77, 141–146 (2002)