‘I still want to scream’: the loneliness and confusion of living with PMOS
The name polycystic ovary syndrome (PCOS) needed to change,It was inaccurate and it was worsening outcomes for people with the condition,It fuelled misconceptions that it is primarily a gynaecological condition, without enough focus on the whole-body effects across cardio-metabolic, mental, skin and reproductive health,A US National Institute of Health Forum described the name PCOS as a “distraction and impediment to progress … causing confusion and a barrier to effective education of clinicians and communication with the public and research funders”,On Tuesday, the new name of the disease was revealed to be polyendocrine metabolic ovarian syndrome (PMOS), and was published in the Lancet.
When the Guardian asked readers about their experiences of it, many described real harms, including symptoms going untreated because professionals only focused on their fertility,Others experienced weight stigma because health workers did not appreciate the metabolic effects of the condition, which can make weight harder to manage,These are just a few examples of more than 300 stories shared by Guardian readers living with the condition,double quotation markI was diagnosed at 14,They could tell just by looking at me: the makeup of my body, the extra hair, especially on my face (this has been the bane of my life) and the weird periods.
They gave me [hormonal medication] Dianette, which I stopped taking after a while due to feeling awful, and told me I’d have unpredictable periods, and that I might struggle with fertility one day.This felt scary but far away at the time, but in hindsight it was hideously simplistic and gave me no knowledge on insulin resistance, the hormonal implications, the impact of stress or the dangers down the road.After university, my symptoms got a lot worse.I felt out of control of my weight and body, and the hair was getting worse and impacting my life immensely with thick, coarse hair spreading to my chest and tummy and getting much worse on my face.I also struggled with stress.
I knew instinctively that it was all connected, I knew it wasn’t right, so I went to the GP.It was one of two really awful interactions with healthcare I had.She barely looked at me.I tried to explain that the PCOS symptoms were getting worse, that I felt sad and helpless.But I remember even now the disdain in her voice as she said: “Shall we talk about the real issue, your weight.
” I can’t express how deflated and pointless I felt, how humiliated and shameful I felt.As I got older, I wanted to have children, so I knew I’d have to go back.I was so scared but did it.The doctor I saw was still very concerned with my weight and asked if I would consider weight loss surgery (no), and I tried my best to convey the impact PCOS was having on my life.To be fair I was referred to an endocrinologist.
I went along, and this was the other awful appointment.I had to see the nurses first and lift my top up, and I can remember so clearly the nurses looking so horrified at my hairy tummy.I felt so embarrassed and just wanted to dissolve.Then I saw the doctor, he was dismissive and cold, and to my forever regret and shame, I didn’t go back.I didn’t see a doctor for a long time.
In fact the next time was maybe 10 years later, in May 2024, which led to my diagnosis of stage 4B incurable endometrial cancer at 37 years old.I didn’t know until then that having PCOS is a risk factor for endometrial cancer, especially if you’ve had a period of amenorrhoea (missing periods).I feel very guilty for that but also a bit cross at the system.After a very scary and almost hopeless time, against all the odds, unbelievably, I’m stable for now, and have just gone back to work after 19 months.– Amydouble quotation markI always suspected I had a problem due to infrequent and painful periods but was told it didn’t matter unless I wanted to get pregnant.
It was only in my 30s, when I told a sympathetic GP about my acne, unusual male pattern hair growth and infrequent periods, that she put it all together and suggested I go on the combined oral contraceptive to control my symptoms.She also informed me about options which would raise my pregnancy chances if I wished to try one day.I welcome the name change if it helps women get a diagnosis and treatment sooner.I wish I had been diagnosed earlier, as I now have scars on my skin from preventable acne, and need electrolysis treatment for the hairs on my body which coarsened into “terminal” beard hairs – all preventable with the right oral contraceptive.These things sound superficial but as a woman growing beard hairs, having acne and no periods can make you feel like a freak.
It’s a huge self-esteem hit.With no guidance on a possible diagnosis and treatment, it can feel very lonely.– Louisadouble quotation markDoctors brushed off things or treated symptoms as unconnected.One doctor even told me, after doing all the blood tests as a teen, that I’m fine and I should eat more vegetables.I lost so much trust in my body.
I thought it was how my body worked.Then one doctor asked me if my period was regular at a post-cervical check chat.I nonchalantly said: “Yeah, if I eat well and exercise and do all these other things.Regular enough.”She got me tested, asking me to not do all those things a week before.
It was a clear diagnosis,– Anonymousdouble quotation markMy symptoms kept getting written off as other things, so eventually I had to do all my own research and present it to a doctor like: “This is what I’m 99,9% sure I have, the symptoms all match up,”The doctor said they would refer me for a scan on my ovaries to see if there were any cysts on them as that’s one of the elements they look for for a PCOS diagnosis,After hearing nothing for months, I chased the referral to be told that it had never actually been made.
I was so concerned about my health and my fertility in particular that I wasn’t prepared to put my faith in the NHS and wait again so I ended up paying for a private scan,After my diagnosis there wasn’t really any care at all, I was just told to manage symptoms through weight loss and to come back in the future if I’d been unsuccessfully trying for a baby for six months,– Alexdouble quotation markI was diagnosed at the age of 26 with both PCOS and endometriosis,By then, I had gone to see both a series of GPs and gynaecologists in the UK, who were extremely dismissive,Through talking to some nurses, they suggested to me to bypass the GPs by going to A&E (accident and emergency) the next time I had severe pain with heavy bleeding.
Following imaging and a laparoscopy, it was confirmed I had both,But following the laparoscopy, doctors’ suggestions for treatment was to go and get pregnant and stop complaining about it because millions of women go through menstruation,So this was just getting diagnosed,It took another 10 years before I found a set of doctors (gynaecologists and an internal medicine doctor) in Germany to actually listen and give me treatment that has literally changed and saved my life,I have been given treatment to control my blood sugar because I eventually was pre-diabetic because of the PCOS.
After 25 years I can say that I feel I am now living.Before, it was surviving because I could hardly breathe with such low iron.If I were still in the UK, probably my kidneys would have been damaged by now had I not been treated.I am now 42 but I still want to scream and it is still extremely upsetting thinking how much I have lost in just trying to survive on a day-to-day basis.– AnonymousContributions have been lightly edited for length and clarity
Google announces raft of free upgrades for Android phones
Google has announced a range of features coming to Android phones this year, including a new Gemini Intelligence AI system and a tool to help users avoid distracting apps.Revealed in a livestreamed “Android Show” event, the free upgrades are scheduled to arrive in waves over the next year for high-end new and old phones alike, including Samsung and Pixel devices. Google also revealed that a new lineup of laptops will arrive in the autumn.Gemini Intelligence will combine the company’s top AI tools into one system aimed at being more proactively useful.It will be able to automate tasks by directly interacting with the apps already on a phone
Head of Microsoft’s Israel branch to step down after inquiry into dealings with Israeli military
The head of Microsoft’s Israeli subsidiary will step down in the wake of an inquiry that has scrutinised its business dealings with the Israeli military.Microsoft ordered the inquiry last year in response to a Guardian investigation revealing the military had used the company’s technology to operate a powerful surveillance system that collected Palestinian civilian phone calls on a mass scale.The joint investigation with the Israeli-Palestinian publication +972 Magazine and the Hebrew-language outlet Local Call found the military’s elite spy agency, Unit 8200, had used Microsoft’s Azure cloud platform to store a vast trove of intercepted calls from Gaza and the West Bank.The inquiry commissioned by Microsoft is understood to have recently concluded. Its findings are unclear; however, sources familiar with the situation said they prompted an announcement last week that Microsoft Israel’s general manager, Alon Haimovich, would leave the company
GameStop’s $55.5bn bid for eBay rejected as ‘neither credible nor attractive’
The board of eBay has rejected the US video games retailer GameStop’s surprise $55.5bn bid (£41bn) for the online marketplace, describing the proposal as “neither credible nor attractive”.Earlier this month, GameStop made an unsolicited bid for eBay, publishing a letter on its website outlining a half-cash, half-stock proposal.This was despite the US games company – which became a global household name during the meme stock craze of 2021 – being worth far less than its takeover target. GameStop had a market valuation of roughly $12bn before its bid, almost a quarter of eBay’s $46bn valuation
Trump heads to China to spread the gospel of American tech
Hello, and welcome to TechScape. I’m your host, Blake Montgomery, US tech editor at the Guardian.Donald Trump is headed to China this week. If his guest list is any clue, he wants to discuss technology with Xi Jinping, though perhaps after the war in Iran.On Monday, news broke that outgoing Apple CEO, Tim Cook, as well as SpaceX and Tesla’s CEO, Elon Musk, would join Trump
Trump heads to China to spread the gospel of American tech while emulating Xi Jinping on AI
Donald Trump is heading to China this week. If his guest list is any clue, he wants to discuss technology with Xi Jinping, though perhaps after the war in Iran.On Monday, news broke that outgoing Apple CEO, Tim Cook, as well as SpaceX and Tesla CEO, Elon Musk, would join the US president. Other guests from the tech sphere include Meta’s recently appointed president, Dina Powell McCormick; Sanjay Mehrotra, CEO of computer memory maker Micron; Chuck Robbins, CEO of longtime telecom giant Cisco; and Cristiano Amon, CEO of semiconductor maker Qualcomm, according to a White House official.Jensen Huang, Nvidia’s CEO – who is close to Trump but criticized the US’s limitations on chip sales to China in an April interview, saying that he didn’t want a “loser mentality” to cost the US its edge in AI – will not be joining the president
Molière Ex Machina: AI used to create ‘new work’ by beloved French playwright
Molière is to the French what Shakespeare is to the English: the last word in historical literature, drama, wit and satire.Now, more than 350 years after his death, the 17th-century dramatist has been revived after scholars at the Sorbonne University in Paris used artificial intelligence to help write an experimental play in his style.L’Astrologue ou les Faux Présages (The Astrologer, or False Omens), a three-act comedy, made its debut at the Royal Opera at the Château de Versailles last week.The two-hour play tells the story of a wealthy bourgeois Parisian who, under the instruction of a charlatan astrologer called Pseudoramus, insists his daughter Lucile marry a debt-ridden and elderly wigmaker.While the theme could well have been dreamed up by Molière, the dialogue, music, costumes and scenery were all created with the help of a French AI tool called Le Chat (The Cat)
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