PCOS - how best to manage symptoms?

[CrazyCatMam]

Teen DD recently diagnosed with PCOS.

Her symptoms are:

• heavy, painful periods (she bleeds through pads and clothes, often bent over in agony, howling in pain)
• rapid weight gain (gone from a size 8 to a 12 - 14 in a year. Her face in particular is very bloated)
• irregular cycle (sometimes only a week between periods. Tried the combined pill but made no difference)
• excess face and body hair (luckily she’s blonde, so not too obvious, but also means laser won’t work on her)
• acne on her face and back
• stomach issues (seems sensitive to certain foods)
• tiredness & low mood

She also has ASD, had a rotten time at school due to bullying and became a non attender. I’m so sad for her. She’s been through so much already and now this. I’m trying to play it down by telling her how common it is, but I want to do everything I can to help her. We have private health care if that makes a difference.

Any advice on where to go from here much appreciated.

Stop playing it down and acknowledge its a big deal.

Tranexamic and mefenamic acid in tandem for pain plus cocodamol if needed
Zita West infoloic supplement.for the insulin resistance component of PCOS. Metformin can also be prescribed off license for this but some GPs wrongly assume that's for fertility only.

It's hormonal so the pill isn't an acceptable first line treatment anyway as it masks symptoms.

Diet wise, cut the inflammatory foods. Read up on the PCOS diet triggers too.

Best step next is education. Print out the NICE guidelines, get familiar and get advocating.

Do either of you have facebook? There are some really supportive groups that I'm part of, and there are often mums posting on behalf of their teenage daughters. PCOS Support UK and Verity are two of the best groups I would say

You might have better luck with private health care, but my experience with the NHS has been absolute shit to be honest. They just said there isn't anything they can do and to manage it with my lifestyle and by losing weight, which is obviously easier said than done with PCOS

Certainly the heavy flow modi bodi period pants are an investment.
low sugar helps me although I’m not good at this
cere ve anti blemish face wash
I use 5 hair removing tools! But just find something she’s comfortable with
early nights where possible

I got mine completely asymptomatic just with inositol.
You're probably aware that weight is a vicious cycle with PCOS. If you carry more body fat your hormones get more out of whack, making the PCOS worse, which makes you put on more weight etc. It is vital to reach and maintain a healthy weight if she wants to get on top of it properly.
Luckily inositol helps with this. For me it allows me to lose/maintain weight like a normal person. So I still have to work at it obviously but it's much easier than with uncontrolled PCOS. I only had a stone to lose but once the weight was under control and after 3 months on inositol all my symptoms were gone. Regular cycles with normal level of period pain, no hair issues, maintaining normal weight, conceived children easily, clear skin. I don't think it works so completely well for everyone, but it's a natural supplement so if it does work for your DD it's a much better thing to be on long term than some of the harsher drugs.
So my advice would be inositol and a decent diet and exercise plan to help shift the additional weight.

The pill changed my life when I was a teen with PCOS. Regular, lighter periods, less hair, acne disappeared. The excess body hair is still a bit of a thing for me but IPL really helps with that. Your daughter could also use hair removal cream or even shaving (like dermaplaining the face)

the pills to use are Yasmin or Dianette, they are safe and effective. When I came off the pill to have a baby it took a while to get my periods back so I took metformin and myo inositol (from Zita West). If not TTC spironalactone is also great.

I would recommend seeing a private endocrinologist, i can give you details of mine if you want it as I’m sure you could have a remote appointment.

PCOS is hormonal and the pill treats the source by rebalancing the hormones (lowers testosterone) it was perfect for me as a teen as I knew when my period was coming and for the first time since I hit puberty I had clear skin 🥲🥲

the Yasmin pill was life changing for me as a teen but I wasn’t allowed it after kids, new research re blood clot risk with that particular one - this was ten years ago mind and I was in the overweight bmi range.

I agree - stop playing it down. I have PCOS (late diagnosed) and it’s horrible. Please don’t dismiss how absolutely crap she must be feeling.

Medication wise - for the pain and traxenamic acid to try and reduce the bleeding. Inositol can work for some people but it made me feel even worse. She could also go on the pill to help regulate her hormones a bit but it’s not for everyone and can come with its’ own side effects.

Otherwise, unfortunately, a lot of is down to diet and exercise to manage her symptoms. PCOS also means she’s more prone to insulin resistance and diabetes so she’ll need to manage what she eats as well.

Also Ive always been slim with pcos - it’s not always down to weight/diet etc. if your daughter is already slim she will need other things eg the pill, metformin, spiro etc but no harm in eating healthy as well.

I found this book really useful:

www.amazon.co.uk/PCOS-Diet-Book-nutritional-polycystic/dp/0007131844

Also took chromium which helped regulate my cycles. I was prescribed Dianette when first diagnosed which used to work wonders in my late teens and early 20s but stopped helping thereafter. A lot might be trial and error for your DD but I really feel for her.

@MauraLabingi which insotil please

Myo-inositol is what I take, but I think that is just another name for inositol tbh. It often comes pre mixed with folic acid and that's the one that tastes good to me do that's what I use.

Thank you for sharing your own experiences. For all of you who suffer with pcos

I really appreciate all of the advice.

We haven’t really had a chance to talk, as she had the appt right before work - she has a part time weekend job. I was waiting in the car for her to drive her from A to B. I’d already anticipated that it might be pcos and offered to go in with her, but she insisted on going herself.

I’ve made a list on my phone of all of the advice on this thread (as well as trawling through old threads on MN) and joined lots of PCOS groups on fb and insta. Books & supplements ordered and I’ve made another GP appt so we can go together.

After years of research and advocating for her because of her ASD, I can’t believe we’ve been dealt this blow. I don’t know how she’s going to cope. She has sensory issues and lives on a beige diet. She refuses to do any exercise or take supplements. Dinner time is stressful as it is, with frequent meltdowns. The weight gain and bloating is really getting her down though, so maybe that might encourage her to welcome some changes to her diet.

Yes please @Peonyyyy. I think it would really help her to hear the advice coming from someone else, rather than me!

@CrazyCatMam im so sorry, it must be so hard for you both. The teenage years are so hard. But there is a lot of ways to improve pcos. No one would know that I have it as I control it so well. I’ll DM you x

@MauraLabingi from what I’ve read (granted this is very limited, as she only got the news yesterday) you’re only supposed to take inositol if you are insulin resistant - how do I know whether she is or not? Would it just be based on her symptoms alone, or is there a test?

She’s taken the news of the new diet surprisingly well - I’ve said that we’ll make the changes together as a family.

Inositol is made naturally in our bodies anyway, so you are just adding extra. It's not a foreign substance as it were. It's generally considered relatively harmless, and actually used to be considered a B vitamin I believe (not positive on this last point though). It's so safe that there have actually been trials done on pregnant women! They never test anything on pregnant women.

My point is that as the majority of PCOS sufferers ARE insulin resistant, it's well worth trying it. Metformin etc have side effects so going straight to those is overkill if inositol will do the trick.

Look up the insulin/testosterone cycle in PCOS. Effectively PCOS leads to elevated insulin, which in turn leads to higher testosterone, which causes some of the symptoms you're seeing in your DD. I am not medical though!

Glad the chat went well!

All of the above is excellent, I’ve had pcos over 20 years.
food is a huge trigger, lots of nuts seeds and berries. Also oats. Cut the refined sugars. Take magnesium and zinc.
the crux for me was getting a mirena coil, it’s made it worse for about 8 weeks but stick it out and it was amazing in the end