How old were you when you got diagnosed?

[Macrina]

I was 30 by the time I got a diagnosis, and by that time, things had spun out of control quite a bit. I'd been having unexplained weight gain since puberty (in spite of appropriate diet and exercise) and it wasn't until I talked with a couple women with PCOS that I realized I had a number of the symptoms, and I got assertive in asking my doctor to be tested.

I am thankful for the diagnosis, as it allows me to treat and manage the illness. However, I'm aware that going untreated for so long has not been healthy. So I try to be open with other women about it, especially younger women, so they may be able to catch it earlier. It helps that doctors are more aware of it now than they were even 10 years ago, but we can still be a voice to help women who are wondering what in the heck is wrong with their body.

 

[Mrs. Luther073082]

22

 

[kuyura]

I was 25

 

[scraparcs]

I think I was 24, maybe 23.

 

[AlohaAquamarine]

21 when I put on 20kg in 6 weeks.

I'm 32 now and it's one kilo loss 3 back at the moment. I need to cut down on carbs again and get back on the pill. I hate the symptoms and hoping that we can give each other some support on this.

So does anyone have anything to share that can help with symptoms ?

 

[fuzzymel]

Within the past year but I had a strong feeling I had it pretty much since my periods started (they never got regular).

 

[kuyura]

I'm the same. I have never had regular periods. Sometimes I get a period once every 2 or 3 months and they last for about 3 or 4 weeks. At times I didn't get my period for a year or so.

 

[Nobility]

I think I was 16 - other than excessive hair, I've not too many symptoms. Except weight gain

 

[wizdim10]

I was 17

 

[Manna]

Diagnosed when I was 21, doctor completely missed the symptoms from the time I was 12...oy

 

[Aibrean]

I was 21 or 22. I told my fiance that I suspected and he kept nagging me to go to the doctor.

 

[Softee]

I was 15. I still am not sure what it is though in depth.

 

[Macrina]

I was 15. I still am not sure what it is though in depth.

Hey Softee, happy early birthday!

It's great that you got diagnosed at such a young age. That will help you and your doctor prevent any problems from developing!

The biggest piece of advice I have for you is to ask lots of questions, and run everything by your doctor. Talk to other women with PCOS, read about it, check out websites like SoulCysters.net and SoulCysters.com, and if you encounter anything that confuses you or strikes you as something you want to know more about, talk with your doctor about it to find out more. Some things you see online are inaccurate, so you should always get a professional medical opinion. [/soapbox ]

I didn't get diagnosed till I was much older than you, so I have some years worth of weight-gain to undo. You can prevent that with treatment along with healthy diet and exercise, and you can also prevent any other complications too.

 

[RebeccaJO]

I am 32 years old and I not to long ago, I found out that I may need a hysterectomy. But my Doctor gave some kind of a pill to see if that helps with the pain, which it didn't. So since this pill isn't helping at all, and I'm tired of being on pain pills and I want my life back. It is like pain pills have taken over. If I didn't need them for pain, shoot no I don't want to be on them. My surgery (hysterectomy) is September 24th. My husband and I will meet with my OBGYN on the 19 to discuss how the surgery will be. My urterus is swollen so it is a good possiblity that he would have to cut me like having a c-section done. Not sure...yet how the surgery will be.

 

[Macrina]

I am 32 years old and I not to long ago, I found out that I may need a hysterectomy. But my Doctor gave some kind of a pill to see if that helps with the pain, which it didn't. So since this pill isn't helping at all, and I'm tired of being on pain pills and I want my life back. It is like pain pills have taken over. If I didn't need them for pain, shoot no I don't want to be on them. My surgery (hysterectomy) is September 24th. My husband and I will meet with my OBGYN on the 19 to discuss how the surgery will be. My urterus is swollen so it is a good possiblity that he would have to cut me like having a c-section done. Not sure...yet how the surgery will be.

Wow, Rebecca, that's awful. I'm sorry you're having to go through that.

What caused the problems, have they figured it out? Is it PCOS-related?

 

[purplecloth]

well i went to the docs when i was 22 saying i thought i had it after my mum read an article in the newspaper...
he didnt know anything about it and i had to tell him what he needed to do... he was useless, but we did the blood tests and my hormone levels came out really screwed... he said there was nothing they could do tho...
so i did some research and went back to him and asked to be put on the pill which he did...

nothing else was done then till i came home from hampshire physically and mentally very poorly...

so i signed back on with my old doc down here and he wanted to know why i was on pill so he arranged a scan and more blood tests, but id been on the pill 18 months by then so the bloods came back in range and the scan showed nothing...

it was kinda left then... but i was kept on the pill cos i told him it helped...

that was when i was 23...

then a few yrs ago i was having some weird bleeding so went to see a female doc who didnt really want me on the pill...

they started testing me for loads of different things, for a while they thought i had cushings which freaked me out...

the first pcos bloods they did didnt come back for like 10 weeks and they were taken too early, so we had new ones done and they came back screwed up...

i was refered to a diet woman... but no-one would say 'yes you have pcos' it was really frustrating...

so i went back on the pill...

then one month i needed the pill and so went into the docs cos i knew i was due a BP test... my doc was away so i saw another one and she down right refused to prescribe it for me... i was furious...

so i waited until my normal doc got back and went to see him... and he kinda agreed with her and said he thought it was time we found our for real what was going on, cos i was married now and i told him i wanted to know if i could have a baby... he said they didnt really test until we had started trying and were unable to... and i said i didnt want to go thro that if i couldnt have them...

hes been my doc since i was a teenager so he was really understanding...

he said he wanted bloods done again... and a 21 day blood test to see if i was ovulating...

that was done, and they came back screwed again... and they said they wanted to refer me to an endocronologist... so i went to see him and all he was interested in was getting me pregnant and thro a pregnancy safely... and said they could bring on ovulation artificially... but he actually wrote in his report 'Purplecloth has PCOS'

finally!!!!!!!

this was about a year ago...

they tried me on a drug called spirolactone (i think) which just didnt work for me...

so 7 months ago i went back to my doctor in floods of tears when my marriage was suffering from my mood swings, my depression, my anxiety and my irrational nature...

he said you have to be PCOS with all this, its definate...

he didnt want to put me on the pill cos of my weight, but i literally begged him, and he agreed... and said he wanted me to lose weight...

so thats me and my PCOS story... its not been easy...

but my aim is to go back to him in 2 months (that will be 9 months back on the pill) and be able to say 'look, ive lost 2-3 stone keep me on this'

cos he said 6 years ago i was at a weight that would have been classed as OK... so my aim is to get back to that asap and keep losing...

then went i get to 16 stone im going to be retested and see what the difference in the hormones are and we can then work out if the pcos is exagerated by the weight... and see if i can have a baby!

 

[Macrina]

Hey Purplecloth! Wow, you really got put through it with the diagnosis. It's amazing how many doctors don't know the basics of our disease. There's more known now than like ten years ago, but it's still not well-known. I mean, it's classed as a "rare" illness, but some people estimate that up to 10% of women might have it!

Anyway, I hear you on the tests coming back weird, the pill messing things up, the weight and moods going wonky... not fun at all. But improvement can and does happen!

Btw, I'm trying to lose weight, too. Over the last two years, I've lost about 45 pounds, and should lose that much again. Maybe we gals with PCOS should start our own weight-loss club, since we have our own special challenges.

 

[purplecloth]

Hey Purplecloth! Wow, you really got put through it with the diagnosis. It's amazing how many doctors don't know the basics of our disease. There's more known now than like ten years ago, but it's still not well-known. I mean, it's classed as a "rare" illness, but some people estimate that up to 10% of women might have it!

Anyway, I hear you on the tests coming back weird, the pill messing things up, the weight and moods going wonky... not fun at all. But improvement can and does happen!

its all so frustrating! the worst just was having to go to the doctor and having to explain it to him and tell him what he needs to do...

it didnt help that as with most doctors their treatment is 'go away and lose weight, but im not going to give you any idea how you are meant to actually do that!'

Btw, I'm trying to lose weight, too. Over the last two years, I've lost about 45 pounds, and should lose that much again. Maybe we gals with PCOS should start our own weight-loss club, since we have our own special challenges.

thats cool!

ive yoyo'd since i was a kid... i went to my first weight watchers group when i was 10! but in my 'adult' live the lowest ive weighed is 16 stone (224 pounds), and that was when i was 16... so i know im up against it... so thats my first aim... to get to that and go from there...

13 pounds in the last 4 weeks and still motivated and determined!

but im in the support group over in the plus sized section in the womens forum...

why not come over there!

 

[Macrina]

its all so frustrating! the worst just was having to go to the doctor and having to explain it to him and tell him what he needs to do...

it didnt help that as with most doctors their treatment is 'go away and lose weight, but im not going to give you any idea how you are meant to actually do that!'

I KNOW! Grr!! It's like, "clearly your problem is that you're fat, and everything else stems from that." They never stop to think that maybe there's a medical problem behind the weight! Seriously, the first time I went to the doctor with (what turned out to be) a PCOS symptom, I had just turned 17 and I was plump but not obese. If any one of the several times I went in to different doctors with symptoms, if they had ever thought of PCOS, then I wouldn't have gone for over a decade with rampant insulin resistance and no way to control my weight. Grr! (sorry to rant! It's just that so few people understand what it's like!!)

thats cool!

ive yoyo'd since i was a kid... i went to my first weight watchers group when i was 10! but in my 'adult' live the lowest ive weighed is 16 stone (224 pounds), and that was when i was 16... so i know im up against it... so thats my first aim... to get to that and go from there...

13 pounds in the last 4 weeks and still motivated and determined!

but im in the support group over in the plus sized section in the womens forum...

why not come over there!

Cool, maybe I'll stop by. I started a thread in this section, so feel free to stop by if you get a chance.

 

[purplecloth]

i kinda feel it would be counter productive to be repeating myself in two threads about the same thing... unless it was something specifically pcos related... cos ive decided to stop using my pcos as an excuse... and get on with it... cos we all have something we could grasp onto to stop us doing what we need to do...

i dont say this to insult anyone, that is not my intent... but this is just the only way i can do this... the more excuses i give myself not to do this the harder it will be... so im talking down any excuses and getting on with it...