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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.
Weight stigma: ‘I just wanted to dissolve’
I 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. – Amy
Late diagnosis: ‘It can feel very lonely’
I 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. – Louisa
Symptom ignorance: ‘I lost trust in my body’
Doctors 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. – Anonymous
Inadequate care: ‘I paid for a private scan’
My 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. – Alex
Dismissive treatment: ‘I still want to scream’
I 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. – Anonymous
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