Daughter newly diagnosed with PCOS/PMOS - needing advice

[Ketzele]

As above, my 20 yo dd has been diagnosed, and the GP basically told her she could offer the pill but 'anything else you'll have to pay for'. I asked what the 'anything else' was and my dd said the GP mentioned laser hair removal.

Is this the limit of treatment options? Is there anything else we could be investigating/watching out for? Id be grateful for any advice.

Yeah sadly that's often the limit of what they'll suggest if you're not actively trying to get pregnant. Some people swear that spearmint tea makes a difference to their symptoms--worth a try.

Inositol supplements are supposed to help many people - I haven’t tried them myself tho

Metformin is sometimes prescribed if there’s a weight problem

I have PCOS and my main symptom is acne, Dianette has helped a lot with that.

It depends what symptoms she has. The irregular periods etc never bothered me until I was trying to become pregnant at which point I did a lot of research and found that a low GI diet and taking inositol worked best at regulating my cycle and lessening any other symptoms.

Getting the PCOS under control with diet will automatically help with a lot of the issues.

Yes doctors are generally useless about this. How did they come to the diagnosis? What tests did they do?

Is she overweight as losing weight can help symptoms.

metformin can help some things but our gp wont prescribe.

Yes, that’s about all they do unless you’re trying for a baby.

They should offer yearly HbA1C testing as people with PCOS are more likely to be insulin resistant and more likely to get Gestational Diabetes when pregnant and Type 2 diabetes. They should offer weight loss support if she’s overweight, if her blood tests show hormonal imbalance they should offer metformin. Getting any of this will be an uphill battle so she should arm herself with NICE guidance on treatment protocols.

Has she seen an endocrinologist or just the GP? Given the whole point of the new PMOS name is to reflect its metabolic nature, I'd really recommend an appt with an endo. I was under endocrinology when first diagnosed 20years ago and actually am considering making a private appointment for a review given im about to hit 40 and think i need to adapt my approach. I managed for many years with dietary changes + inositol supplements (recently ive been using the novomins ones), then went onto metformin during the baby years (1 DC needed fertility assistance, 1 DC a natural conception). So there are definitely more options than just the pill but as pp have said, it really depends on what symptoms she is having.

Thank you all this is very useful. Yes she is overweight, despite going to the gym regularly and eating fairly healthily. She has irregular periods and body hair. She has only seen the GP; she had blood tests and also a scan.

I was diagnosed at a similar age and that was the treatment advice then (over 25 years ago) so it is pretty shit to read that nothing changes.

Diet does a lot to help, especially with the hair growth. Look up things like the insulin diet/high value carb. Especially if she suffers from hyperinsulineamia too. Regulating her insulin production will help with the symptoms and with the weight loss.

But most of all, just be there for her! As the reality of what PCOS means hits her she is gonna need you to just be her mum and on hand with hugs. Try not to try and fix things.

On TickTok look up a woman who has PCOS and gives good helpful advice. She goes by the name 'weareovait'. I know people who follow her and have taken her advice and are so much better.

With PCOS or as it’s been renamed PMOS it needs to be treated as a metabolic condition,. One of the leading traits of PMOS is insulin resistance and so eating healthily may look different t what the NHS typically describe, particularly in relation to carbohydrates.

The best suggestion I can give is to have her look at Diabetes UK and other reputable Diabetes support for nutrition and exercise guidance. Generally a lower carb diet is recommended, not no carb, but lower carb and pairing them with a protein or fat, so a slice of seeded toast with scrambled egg or with peanut butter. Then a short brisk walk or other form of activity after the meal to help break down the sugar and increase metabolism.

If she’s overweight then losing 10% of her bodyweight can make a big difference in other symptoms of PMOS.

I was diagnosed through hormone levels and a scan of my ovaries when I was 27, I was trying to conceive and had very very irregular periods. I lost 10% of my weight and my periods returned and I was able to get pregnant.

It is hard going and would be significantly easier with medical support and medication like Metformin or Mounjaro but there are thinks she can do herself even if the Doctors won’t help. I have no personal experience of insotol or berberine supplements but have heard good things about both and they are available from Holland & Barrett and other similar shops.

If financially Mounjaro is an option for her then I can’t recommend it highly enough, I was diagnosed T2 diabetic in Aug 2024, Metformin, insulin and basically eliminating all carbs from my diet couldn’t get my sugar levels low enough so the diabetes team added Mounjaro to my prescription and within 6 weeks I was able to stop the insulin, 6 weeks after that I was able to stop the metformin and over the 18 months I’ve been on it I’ve lost 10 stone and for the first time since primary school I’m a healthy BMI.

DD biggest issues were weight gain and acne. She saw a dietician and was eating so little, went to a couple of gym classes a day. Her GP suggested she needed to exercise more and offered her antidepressants!

Eventually she saw a consultant in London who prescribed the pill and put her on Metformin - together they worked amazingly well. He subsequently prescribed Mounjaro which also helped.

Her skin has been great for the past few years and her weight is now well under control. She still has mood swings - whether that is PCSO or personality I don't know!

Investing in the consultant was the key to changing things.

Hello @Ketzele for me myointisol helped with these things. I also think spearmint tea helped. My periods regulated and I started to lose weight. I also had less hair growth