Younger person struggling

[rosecrawler]

I’m 16 (I know the age cap for this forum is 18+ but I can’t find anywhere else to look) and I was diagnosed with suspected PCOS in March of 2022 and I’m really struggling. I feel like I’ve gotten no real advice from the healthcare professionals involved in the diagnosis process (they were amazing I just think there was a lack of special consideration for my age and lack of knowledge of these things) and I really have no idea what I can do to improve the state of my condition- or if it can be improved at all, I simply don’t know. I’ve been put on the combined contraceptive pill to even out my hormones and hopefully stop the abnormal hair growth and irregular periods (semi-working so far) but other than that I have no real idea what’s happening to me or why it’s happening. All I know is that there are cysts (that aren’t really cysts apparently) on my ovaries that block ovulation or something. I’d really appreciate any advice as no one my age seems to know what I’m going through and my mam thinks it’s just another illness that doesn’t effect me at all- but it really does.

(edit: I’m on the cusp of being underweight from a medical point of view. I saw some people mentioning losing weight but also wondering if maybe i should try to gain some?)

[alohalu]

You are way less alone than you may think. Soon you will realise how many women suffer of PCOS. Probably many of your friends have it and they won’t be diagnosed for years because they are just not showing any symptoms.

And this is the thing, each women suffer with different symptoms and different degrees, so you will have to take each piece of advice and be aware that it may do nothing for you.

For me, the contraceptive pill didn’t do me any favours, and I think you should do a bit more of your research before using it long term.

For the hair growth, I did laser treatment and I bought an IPL machine, best decision ever! Long term it has saved me a lot of time and money.

Last advice from me, talk with dietitian specialised in PCOS. A good diet and the right supplements will be very important the rest of your life.

You’re actually very lucky that you found out this young! It means that you will be able to find what works for you and stay healthy for very long.

[NellieH in reply to alohalu]

Agree with everything here! I'm now 67 but I was exactly like you at 16. Back then, nobody knew anything. Shortly after turning 21, I was diagnosed with what was then called Stein-Leventhal. I won't tell you about the various harmful ways I was treated. I was skinny and athletic/active. Going on a drug called Androcur helped with the hair, though I didn't start that til I was in my 40s (because it took a long time to find a knowledgeable endocrinologist). PCOS is a metabolic syndrome, not a single ovarian issue. Actually, I think the term is used as a broad umbrella and there are probably several different conditions under it, but not enough research/ knowledge to distinguish and treat them. Diet (I don't mean weight loss, certainly not in your case or mine; I mean things like avoiding lots of added sugars) are important. Check out PCOS Diva; lots of good advice there. And get that laser, etc. Unfortunately, I think most docs still really don't know much about this.

Do everything you can not to let this depress you. Sixteen is such a hard age to be going through this. I remember well. Take good care of yourself. Check out PCOS Diva and also The PCOS Nutritionist.

[rosecrawler in reply to NellieH]

I’ll definitely check out those sites thank you so much !! It’s nice to feel understood in such a new circumstance to me, makes me a lot less anxious of the future to hear that others have managed to pull through like i will !!

[rosecrawler in reply to alohalu]

Thank you so much for this!! It’s amazing to hear that i’m not going through it alone, I’ll definitely look for a dietitian that does sound like something I’ll need to look into, thank you so so much for the information though it’s really helped !!!

[NellieH in reply to rosecrawler]

You're not alone, RoseC, and there are things you can do. Seek them out, and be compassionate with yourself. Find caregivers who know what they're doing and be informed, as you will need to do some advocating for yourself. Like you did by coming here

[needlewoman22]

HiSome of what I have written below(in answer to someone else on this forum) won't apply to you just now, but you see that many girls are going through the same issue. Do not take 'no can't help' from the GP-insist on seeing an endocrinologist in the first place-gynae can come later,

But your hormones need to be assessed properly first and your symptoms managed. Good luck!

My daughter has PCOS and was prescribed Metformin at 21. She took it for years and suffered terrible bouts of Diahhroea(?) and it did not seem to help. I got her an appointment with an endocrinologist who had been featured in a TV programme, and she said stop the Metformin and take Spironolactone. The Metformin is to regulate periods and make pregnancy more likely, none of which was explained at the outset of prescribing it. My daughter is happily single, no intention of getting pregnant so why do they assume EVERY girl wants to! (she is now 47)The Spiro has improved her spots and facial hair and she also had a Mirena coil fitted, so her VERY heavy periods have dwindled to a trickle. Go back to the doctor and say what you want the outcome to be-if you are trying for a baby it may help, but if not quality of life is paramount. Ask to see an endocrinologist with a view to a proper diagnosis, and treatment plan. Few GP's know anything about PCOS other than it makes getting pregnant hard and fail to recognise the varied symptoms which are present. Good luck and don't take 'no' or a shrug of the shoulders as sufficient-it isn't!

[Butterfly_sam]

I brought a home laser removal and I use it every two weeks. From my experience it is worth the investment vs going to the beauty salon which can be costly in the long run.

My tip would be to buy a trusted brand name and make sure the laser area is a decent size to laser your body. Something around 1 inch long as a minimum. Anything smaller and it will take longer to laser yourself. All the best.