DD with PCOS. Anything more she can do?

[Feetuptime]

DD is 21 and recently has been told she has PCOS. She had periods that were up to 50 days apart, bad acne and worst of all for her very large weight gain.

GP put her on the POP pill and suggested fasting to try and lose weight. The weight distribution is strange, she’s big all over but especially her shoulders - she looks like an American football player. She’s really distressed by this. She has huge rolls of fat on her back and quite a moon shaped face. Lots of large stretch marks.

The pill has helped her acne hugely but she cannot lose weight. She stops eating at 6pm and doesn’t eat until 12pm the following day. She’ll have soup or a sandwich for lunch and then a proper me for tea. She cannot budge a pound and she’s so disheartened.

GP would not prescribe metformin and she’s at a loss as to what to ask for next.
Shes not sure about any of the weight loss injections (not sure if she’d qualify anyway) but we wondered if there was anything else that can be done for this.

GP was pretty dismissive and hasn’t referred her to gynaecology or endocrinology - we don’t know whether to push for this. Any ideas please?

There is a good PCOS forum on Reddit. Suggestions will include low carb plus low intensity exercise. Metformin is good for a lot of people as it tackles the insulin resistance that is behind most but not all PCOS. Can she see an endocrinologist? They are more willing to prescribe.

Also get thyroid checked as it's often an issue as well.

If she can't get metformin then try myo inositol (ideally with a 40:1 mix with chiro inositol but on its own can work too) - 4g per day. It can also help with insulin resistance.

My sympathies as my DD suffers badly with it. Metformin stopped the massive weight gain (despite eating virtually nothing) but she is struggling to lose it.

Thanks. We have bought inositol but she’s not great at remembering to take it. It’s the rapid and uncontrollable weight gain that I feel so sorry for her.

It may be worth another visit to the GP to ask to be referred

I don't have PCOS but agree to get thyroid checked. When my underactive thyroid was unmedicated, I had a fat 'moon face' too.

could she have cushings disease? Very rare but symptoms would fit. Might be worth pushing for an endocrinology referral. Could be pcos related though.

Is there a reason they won't prescribe metformin? Is it age restricted. It is supposed to be v good for a whole range of hormonal issues and will also help stop insulin resistance in its tracks which important as PCOS and type 2 diabetes are linked

Low carb really helped me.

Low carb is a necessity for me. I can control the length of my cycle based on my carb intake.

Personally, I haven’t found any extra benefit to intermittent fasting with low carb. Many times I’ve tried skipping breakfast for long periods and it doesn’t impact me positively. The low carb is the most important thing for me.

I have heard good things about Berberine.

I think above suggestions that there might be something else at play could be right.

I'd look up cushings disease and be pressing for a referral to an endocrinologist

https://www.instagram.com/thepcosmentor?igsh=bWo2YmNwd2k3dmE5 has loads of advice and recommends other supplements that do similar to Metformin

Eat more, especially protein and veg, limit sugar, plenty of water, strength based exercise, supplements

The first GP I saw after gynaecology procedure who didn’t listen saying it couldn’t possibly be bowel trouble on 7th March 2024 and the gynae surgeon was incredibly busy (oh on leave for 4 weeks) and has since gone into hiding. I’ve long since given up on hearing any apology from the nhs.

I look forward to a gynaecologist explaining themselves but I’ve grown to doubt they will. You may salute Dr Ross of West Suffolk but I don’t have too.

She needs a low GI diet with pcos and also low calorie if she needs to lose weight. So cut out white carbs, reduce complex carbs and watch portion sizes.

I have thought of Cushings but she doesn’t have the skinny arms and legs, she’s quite big all over.
Thyroid bloods all came back as normal. Androgens was high however ultrasound of ovaries normal.

Low carb probably would work well but she’s not a great meat eater.

PCOS here. The only thing that works for me is low carb.

So two eggs for breakfast, cooked any which way.

Large salad with any combination of, fish, cottage cheese, ham, chicken. Coleslaw for lunch.

Dinner any meat dish. So could be Bolognese, curry, shepherds pie, casserole, I do have carbs with this meal, so pasta, rice, potatoes. Not a big portion but enough not to feel deprived.

I'd delve into Amazon books, for knowledge, GPs have limited knowledge. You can ask for a referral but unless you pay it will be a long wait

Amazon some really good stuff I'll have a look myself later. Just type in PCOS.

Is she just wanting to lose weight? As I've found my GP entirely useless because they said unless I'm trying to conceive then they won't do anything for me! PCOS is a strange old time as I had 3 kids in 5 years, was told I was 'super fertile' and then diagnosed. They said I'd most likely been suffering from it prior to this.

I had clomid to conceive my first, two periods a year. After that the next two were conceived quickly. Didn't help with the weight and hairiness though.

I also thought about cushings but am not a doctor.

I'd say low carb or low GI, and either a power based team sport (try rowing or maybe a martial art) or a weights and cardio regime (try a regular boot camp). The big silver lining with PCOS is that she may find she tones up fast and she may be pretty strong. That broad shouldered frame will do brilliantly in a sport. I'm only in good shape with PCOS if I'm in training.

@justasking111

No I agree with you, I struggle with my weight and have patches of hair I'd prefer there weren't 🙄 but my doctors have told me a few times that unless I'm actively trying to conceive then they can't do anything for me. Along with telling me pain isn't a symptom of PCOS 🙃

If ultrasound of ovaries was normal then how can it be PCOS?

My right ovary would tell me I was ovulating with a horrible sharp pain. Which I still get post menopause. MRI showed normal. But I do have PCOS.

Has she had an HbAC test to see if she is in the pre diabetic range or insulin resistant?

I have insulin resistant PCOS and the only way I can lose weight is to go low carb like other posters have said. That means no bread, rice, potatoes, the only carbs I can eat are green veg and berries, occasionally rye crackers when I really feel like I need something bread like.

Going for a brisk 20 min walk after a meal also helps as it aids the breakdown of sugars.

Pairing any carb I do eat with a protein and fat helps regulate blood sugar levels too, so boiled egg with asparagus for dipping, apple slices with peanut butter, ryvita with full fat cottage cheese, berries with full fat Greek yoghurtand so on.

I found once I lost 10% of my body weight my periods regulated and my PCOS symptoms reduced.

My father had to collect me from school a couple of times with the pain. My mother would put me to bed with painkillers, a hot water bottle and a shot of brandy.

You daughter needs to take responsibility and accountability. I mean that in the kindest way possible. I'm saying as a person with PCOS.

Weight gain unfortunately is the shitty symptom. She needs to figure what best suits her. This will be trial and error. I, like your daughter have big shoulders. However, when my weight is lower I still have wide shoulders.

My advice would be that she does her own research as everyone is different, there are similarities but she needs to learn to connect with her own body and understand what works and doesn't for her. For example, if I go past day 30 and not had my period, I will rest, bath, check in on my mental health- have I been busy more that usual what is my stress levels like, if that hasn't worked I will book in for a massage/reflexology etc. I am on no medication. I'm still trying to get my weight under control however, Im having regular periods now, whereas before (an especially if I'm stressed) I don't have any or they're very irregular.

Walking!! I have to do 10,000 steps a day to maintain healthy weight. High impact exercise doesn't help has to be walking. Swimming might work. You want low impact and a lot of it.

Never eat bread or cereal. Try at 1200 calories a day don't go over 1500.

That's to just to maintain healthy weight. I always put on 3 stone when pregnant because i do t restric food intake as baby needs to grow healthy. then can't diet when breastfeeding so it keeps climbing. Even a normal healthy diet and I gain weight.

If I actually need to loose it I've found it is impossible to succeed healthily. I will drink upwards of 10 cups of tea a day tiny splash of milk but with sugar. and only eat one meat and veg heavy meal with nothing processed around 4/5pm. It's about 1000 calories a day and a huge chunk of that is the sugar in my tea. I don't know what it is about the sugar caffeine combo but for me it works better than cutting the sugar and having those calories as a small lunch. If possible do even more walking. It's not healthy and probably not best advice but I found nothing works that is healthy. Makes my skin worse definitely. Then once healthy weight focus on healthy eating and skin improves again.

Personally I've found dairy makes my skin worse. And hormonal contraception keeps me fat even when I near starve myself and then I will binge eat im so emotionally unstable on contraception. I'm copper coil all the way now.

Which pill is she on? Dianette is anti androgen and could be better for her.

Also what was her TSH… up to 4.5 is deemed “normal” but many people feel crap at anything over 2.5.

Unfortunately low carb really is helpful for PCOS.