Don’t know what to do…

[Mistypink]

I’m 23 years old, I have pcos. Excessive hair growth on my face, blah blah blah all the shitty symptoms you can think of. I’m overweight and really struggle to loose weight and I know that’s not helping my situation but I just don’t know what else to do. I’ve been with my partner for 5 years and I have never fallen pregnant. I’ve spoke to my doctor and I’m not eligible for ivf due to my weight. My doctor also told me that there is NOTHING they can do for the hair on my face or body and I’m just stuck in a rut at the moment in this horrible cycle of not getting any help for anything and I don’t know what else to do. I struggle with my mental health and I can’t control my emotions so I feel very overwhelmed when I think about this situation.

[Brody34]

So sorry to hear your having a hard time hun, it’s just awful and I really feel for u. I’m in a similar situation getting no help so frustrating as I read up on it all the time and hear about different treatments but iv basically been told to live with it. I feel like my hair is thinning now on top of all the other shitty symptoms and it’s getting me down. I’m currently trying to do as much research as I can just to try and help myself first to lose weight, it’s so hard to shift tho. I’m looking up every vitamin supplement anything to try and help symptoms. Xx

[Mistypink in reply to Brody34]

Thank you so much for taking the time out of your day to reply to my message, I really am so grateful. And I know what you mean!! I’ve heard that there is stuff they can do to help but when I go they just tell me oh there is nothing we can do, I’m so fed up with going and just being rejected time after time, it’s knocked my confidence so much that it just broken me. I can’t bring myself to go to the doctors just to face more rejection x

[CurlyGirl983]

I really don't know where to begin, I just feel for you on so many levels. Your doctor, get rid and find someone else. I find most gps unhelpful and pretty ignorant about pcos leaving the onus on you to figure it out. However if you could at least find one who is willing to explore and learn along with you then it's better. Seriously I've had it with stubborn gps who think they know best about how you feel. Trust me if you don't feel right, you need to take the lead. So yes with PCOS losing weight is a struggle (i have put on despite being fairly active and fairly healthy eater-i do love the odd treat heehee). But you need to look at the reason why you are putting on the weight. It could be because of your blood sugar levels, driven by insulin resistance - this accounts for like 80% of pcos sufferers. Get that checked (it might come back normal but that doesn't mean you don't have it so insist on further investigation) and perhaps add some supplements like omega 3, magnesium, vitamin D. Add more leafy greens, healthy fats (oily fish, olice oil)into your diet and do some exercise you might see a difference.

Hair loss/excess hair seems like you've got high testosterone levels so again get that checked asking for DHEA levels specifically. It can be minimised dear so don't feel like it's a life sentence. I too struggle with mental health but I find a good walk, some self care (buy that dress, have a nice soothing cup of tea) helps. This is normal experience of pcos, shared by so many of us, me included.

Also get on instagram and follow: thepcosphd, healthypcos and holistic. Pcos. Great tips and advice.

Ps you may struggle to conceive now but put some practices in you'll be able to have kids. Just takes time, patience, and a lot of determination.

Look after yourself and stay positive, pcos can sn be managed.

[Mistypink in reply to CurlyGirl983]

Thank you so much for replying to me message. To be honest I’m shocked that people replied lol. I have recently joined a new doctors but I’m so scared to go because I don’t know if I can’t face anymore rejection. My mental health is a big struggle in my life as I suffer with borderline personality disorder, not sure if you know much about it but in a short explanation, I can’t regulate my emotions, so the smallest thing can set me off and I’m so disheartened from going to the doctors and then telling me there is nothing they can do l, it just kills me inside everytime. But I think I will take your advice and maybe try and make an appointment, I’m just so scared if you know what I mean.

[CurlyGirl983 in reply to Mistypink]

I completely understand and it's nothing to feel ashamed of. I find it hard to assert myself infront of gps who think they know better. I feel like I'm being gas lit each time a blood test or ultrasound comes back normal. In fact i am mustering up the courage to ask my gp for tests because I feel lost at sea as to why my symptoms persist. It's not right that we have to fight for proper, considered medical care, but the education out there is pretty limited.

But there are some things you can do. Your doctor is just one part of your strategy (albeit an important one).

1) Try seed cycling (google it) - it's completely natural and can help to regulate your cycle and it gives you a wonderful complexion.

2)Some great books to read are Period Power by Maisie Hill and and Tara Costello's Red Moon Gang Inclusive guide to Periods. Brilliant books and talks about pcos, fertility and allround women's health. You can grab them on Amazon.

3)I really do suggest integrating some restorative exercise like a good walk, yoga or just a bloody good dance around your room. They are great stress busters and can relieve the high testosterone levels. Also rest and do some inward self care- sounds flaky but it's importantbto safeguard and strengthen your emotional wellbeing. Pcos is nasty and tests the toughest of people.

4) google Daisy Pcos. It's a UK clinical study aimed at pcos sufferers to determine health risks such as diabetes etc. It basically involves a half day visit at your local clinical hub (nationwide)- they pay for travel expenses . There you get blood tests, take questionnaires with an endocrinologist about your lifestyle and get a glucose fasting test. These will look at testosterone, sugar levels and might point you in the direction of what is causing your pcos. I did it myself. It was an interesting experience but i didn't find out the answers. But thats just me and my journey continues. You might have a different outcome and perhaps feel better because at least there are people listening to you, and know what you're going through.

Chin up girl. Onward and upward. Don't take crap from anyone. The cysterhood is behind you!

[Mistypink in reply to CurlyGirl983]

Thank you so much for the advice, I’m so grateful!!! 😇

[NellieH]

I really agree that being to the root is what you have to do. I was diagnosed at 21 and am about to turn 67. I have always been thin but had all the symptoms you're experiencing and more (massive scalp hair loss). Even so, in spite of being thin, I think insulin resistance was a big part of the problem. I wish as much had been known back then as is known now. Do something about your weight -- for you, it could be as simple as that. Start going on long walks, swimming, getting exercise. I know it's not simple, but at least it's an option that we thin PCOSers don't have.

I strongly suggest you check this out: thepcosnutritionist.com/

Good luck with this and stay strong. You're only 23 and have a chance to get this under control.

[chuck12]

Hello! I’m so bewildered to see someone exactly the same age as me, going through the same thing as me, i too have all the shitty symptoms, i’ve had these since 2018. I have never been to the doctors about this so i don’t have an actual diagnosis yet, i’m simply ‘self diagnosing’ for now until i pluck up the courage to phone my GP. (i know i shouldn’t but i’ve been doing research and i think i could possibly have pcos) my facial hair is so bad, and i shave everyday, sometimes twice and i’m making my skin so sore and red!! my mental health has gotten a lot worse, and i’m struggling to stay positive about anything. I know this is advice as such, but i thought i would reply to you letting you know that you are not alone, and if anything thank you for posting about your situation, i feel a lot less alone now, and i hope, i pray to god you get help soon! i know i don’t know you but i truly send love!

[Mistypink in reply to chuck12]

Thank you so much for messaging back!! Omg!! How strange! To be honest I’ve never anyone my age who has it either!! But I would definitely recommend going to the doctors!! But I 100% understand not waiting to go!! Like you, I have to shave my face everyday too, and I know how sore it can be!! Sending my love to you too!!

[Crochetywoman]

Hi, I sympathise with you immensely. I also have suffered from PCOS since forever. I was always the fat child & in my teens started to grow a beard. Tried all sorts to get rid but nothing worked. Never had periods.

Only in 2002 when I moved areas & so went to a different GP, who was a woman who was interested in PCOS. That was when I learnt I had PCOS!

She put me on to 'Vaniqua' which is a cream to put onto your facial hair. I'm not saying it will work as it hasn't got rid of mine BUT it has slowed the growth rate down. Anything is worth a try. I was also shaving twice a day, now it's down once a day but I can now go out in the morning without having to shave first.

Also she put me on Metformin (which is used with diabetes) & with dieting it did help me lose a fair bit of weight. Maybe you could suggest that to your GP?

I'm 64 now and reading your plight, felt I had to say something to you. I hope it gives you a bit of something to go on.

All the best x