My 14yo has been diagnosed with PCOS and she’s devastated

[CVVFan]

How can I support her? I have my own chronic conditions but not that one. I know it’s not a death sentence but the doctor did tell she needs to lose weight and that left untreated can cause cancer :(

Really ? I've never heard the cancer threat before and I have it. What sort of cancer ?

Diet ,excise it's all about insulin resistance .

Apparently it’s down to the overgrowth of uterine lining. (She has no periods at all).

Firstly if that's how they worded it I'd complain. PCOS does not directly 'cause' cancer, although those with it do have an increased chance of some types. Also very unfortunately there isn't treatment as such.

Diet and lifestyle do have a significant impact on symptoms (in my lived experience) and at 14 she is young enough to make lifelong healthy habits the norm.

I in no way speak for everyone, but I have PCOS and endo - for 25 years. My symptoms have only gotten really under control in the last 18 months, which coincides with my decision to come off ALL birth control, having spent 25 years on various hormone pills and implants with no real success. Albeit I am 41 and not 14, so obviously different hormone/life stage.

She’s already lost some weight, but I guess she has no symptoms beyond the lack of periods.

My periods became regular and it could be a coincidence but I started to do a small intermittent fast until 11am

Cancer? WTF?
Yes, she needs to have a period every so often so that the uterine lining does not build up. I believe there are drugs that can induce bleeding if she needs that.

But basically it CAN be controlled completely by weight maintenance for many sufferers. It is vital to maintain a healthy weight with PCOS. Get her to take myo-inositol supplements, and help her lose weight. After I did this, my periods regulated, I conceived easily multiple times, and don't have any symptoms at all. When I was first diagnosed the GP said "If you stay a healthy weight it probably won't give you any major problems" and he was right.

I know weight loss is difficult with PCOS, but it isn't impossible. The inositol will help regulate her insulin levels which will help, and a PCOS diet is also a good idea (broadly this is low GI but look it up).

Why is she devastated? It's very common. If she's overweight then surely weight loss was already something she was working on?

there’s lots that can be done to improve the condition. My daughter has pcos and since taking Myo-Inositol & D-Chiro Inositol supplements daily her periods are back. She also drinks spearmint tea daily. Exercise is super important and avoiding refined sugars/ carbs. Good luck!

Poor girl. It's not a nice thing to have, but there at things she can do to manage it. Can you support her in losing some weight? Go with her on walks and runs, to the supermarket to pick out some really nice healthy meals?

She needs to get out every morning and do a fast strenuous 15 minute walk. Early sunlight in the eyes and early exercise will boost her metabolism and help ovulate and regulate her periods.

15 minutes cardio in the morning, is worth an hour in the evening. Brisk walk to school is very beneficial.

Also getting 30g of protein at breakfast is important too. So eggs, cottage cheese etc. Ideally nothing processed or refined. Whole foods are best.

Yes, she’s been prescribed northestirone for a one off bleed.

I guess from her POV this is completely unnecessary as she really doesn’t have any symptoms (beyond the miss periods).

Every one in her family is overweight and the only ones who aren’t (like myself) is only through constant exercise, and she doesn’t like to work out that much, although has a much healthier diet than say 2-3 years ago (and thus why she lost weight).

ThaT doctor sounds awful!

I was diagnosed at a similar age and the worst thing for me was the excess hair. I got laser in my early twenties and it was life changing. The best thing I have ever done hands down.

I was on the pill for ages and that helped with symptoms, but you can also try and manage it ‘naturally’ by having a healthy weight, resistance training and a supplement called inositol is good.

Im now early 30s and its basically cleared up - I have 2 kids both conceived first try and I honestly don’t even think about it anymore.

My cycles are a bit longer than average but that’s it!

The inositol and PCOS diet will help with the weight loss. If other women in the family are overweight it may be that they have PCOS too, as it runs in families. Even if they don't, it doesn't mean your DD has to be overweight just because other people are. She can choose her own path. It's probably harder if there's a genetic predisposition to gain weight, but it isn't impossible. Exercise is nowhere near as important as diet so I would focus on that.

I was on orlistat and diets for YEARS I only lost weight once I started running.

now in what looks like peri, my diet is much more pristine and what really makes a difference is how active I am. I’m just giving this context as it could be similar for her.

her dad was calorie counting for years and could never properly control it, and is now fully diabetic.

When you say “from her POV this is completely unnecessary”, is that in reference to the norethisterone? If so, that explains why the GP has brought up cancer risk, and is totally appropriate for the GP to do so. She can choose not to take norethisterone, but she needs to know that puts her at increased risk of endometrial cancer.

weight is managed by diet, not exercise (this is evidenced based), so not liking exercise shouldn’t be a barrier to achieving a healthy weight.

Changing her life style. She already it’s a very controlled diet when at her dad’s because of his diabetes. She calls it “restrictive “ and no she doesn’t go crazy at mine, but she has pasta (normal potion) something she can’t have at her dad’s.

I appreciate it is harder. But if you say all this to her she will just be defeated before she's even started. Get her the inositol, tell her it'll give her an edge (it will) and start a proper plan based on the PCOS diet. Agree to stick to it for 3 months and then reassess. Encourage exercise where possible of course, but the diet is vital with PCOS because of the insulin issues. It's very like diabetes in that respect.

She is only 14... there is time... herbs and seeing a naturopath might help..

Why don’t you actually read the post properly

With respect OP, you have received lots of responses which are mostly speaking with one voice. PCOS diet, inositol, maintain weight.
You say she's devastated. But obviously not devastated enough to give the solution a good try. That's fine, it's up to her. But uncontrolled PCOS often leads to hirsutism, obesity, infertility, and diabetes. Sounds fun eh! Faced with that I'm happy to cut down on pasta quite frankly. I don't know if I would have been so keen aged 14 though, so she probably needs you to step in here and make small changes to the way the whole family eats.

You probably need to explain to her the connection between the northestirone and preventing cancer.

If she can get her cycles going, risks are much reduced.

It sounds like the doc did a poor job of communicating to a 14 year old, so I’d ring the practice manager, say that and perhaps ask if there’s a nurse or doc with an interest in this that can explain things to her properly

Well she’s 14 and she’s just come out of a docs appt where all she heard was cancer, so she’s been poorly communicated to and is in shock right now.

Once the OP patches that up, I expect changes can be made

But that’s the thing, I don’t think she gets what’s the big deal, if she only hasn’t had a period in 18months.

so TO HER it looks like she has to change her whole life, for something that doesn’t even impact her day to day.

Look up kym campbell and sign up to the 30 day free trial - the programme is worth purchasing. It’s very educational as to the scientific ‘why’ behind the dietary changes, which can be very motivating. Best of luck. For what it’s worth, Early diagnosis in my view, is positive as she can adapt to minimise impact and plan fertility etc. I wasn’t diagnosed til mid 30s and undergoing fertility treatment even though all the signs were there as a teen, and I think I might have approached life a little differently x