How is PCOS diagnosed? Can it go missed?

[xMillie]

You’d think I’d have a clue after ttc for so long.. so I’m sorry to sound so stupid and crazy but I’m worrying and wondering about my odd cycles and AF is now possibly late but I’m not pregnant.

Can PCOS easily go missed? How do they decide if you have it or not?

I’m currently worrying and waiting for an appointment and scan with gynea after bleeding red for just over 2 weeks this cycle. Was told I was referred as an emergency while I was still bleeding but doesn’t feel like it as I haven’t heard a word from them.


So fed up of worrying. Some days I’d wish they’d just rip everything out so I never had to worry about periods and wonder if I’m pregnant or not. I just want predictable cycles again but thats too much to ask isn’t it.

 

[SugaryIris]

I was diagnosed by an ultrasound buts it’s not always visible that way and is sometimes a blood test.

I also think they ‘diagnose’ some people if they have a few of the symptoms, seems to be a bit of a spectrum x

 

[xMillie]

Hm I guess with the amount of ultrasounds I’ve had they would’ve picked up on it before.


I just don’t know what to think right now I don’t understand how my cycles go from af always bang on time with no time to even think to test to cycles that are sooooo confusing I understand the odd cycle here and there can be a bit off by a day or 2 but this has gone on for too long. I really wanted to have a break from ttc while we save for ivf but instead all I’m doing is worrying about whatever is wrong and now I’m late again and not pregnant.. just want to bang my head against the wall.

 

[maythe4thbewit]

It's not always diagnosed by ultrasound, you usually need two out of the three main criteria which are, irregular cycles, cysts visible on an ultrasound or blood tests showing high levels of male androgens such as testosterone.

Polycystic ovary syndrome - Diagnosis

I've been diagnosed since I was 14 but plenty of people develop it as hey go though life millie xx

 

[maythe4thbewit]

Also my cysts on an ultrasound over the years seem to come and go, which is why its not always reliable. When you ovulate what day do you tend to ovulate on? How long/often are your irregular cycles and normal cycles? What are your periods like? Xx

 

[xMillie]

This cycle and the one before I don’t know when or if I even ovulated.

I used opks last cycle, never got a positive only the flashing face so never had peak, ended up stopping testing after 9 days of flashing face. Then on cd23 I started bleeding red which went on for just over 2 weeks.

This cycle I haven’t used opks, I didn’t know when to and was still bleeding around the time I’d normally start them so don’t really know if or when I ovulated.

Now I’m cd32 from when I first started bleeding and no AF yet so it all makes absolutely no sense to me. It’s my birthday tomorrow and I just feel miserable.


They did take blood when I went to the doctors when I was still bleeding but she didn’t exactly say what they were for and she was really really useless tbh. Maybe I need to chase them and see where this referral is I hate that all I’m doing is worrying.

 

[maythe4thbewit]

This cycle and the one before I don’t know when or if I even ovulated.

I used opks last cycle, never got a positive only the flashing face so never had peak, ended up stopping testing after 9 days of flashing face. Then on cd23 I started bleeding red which went on for just over 2 weeks.

This cycle I haven’t used opks, I didn’t know when to and was still bleeding around the time I’d normally start them so don’t really know if or when I ovulated.

Now I’m cd32 from when I first started bleeding and no AF yet so it all makes absolutely no sense to me. It’s my birthday tomorrow and I just feel miserable.


They did take blood when I went to the doctors when I was still bleeding but she didn’t exactly say what they were for and she was really really useless tbh. Maybe I need to chase them and see where this referral is I hate that all I’m doing is worrying.

Aww millie, I know how rubbish it is and how you must feel. It's horrible. Happy birthday for tomorrow. Try and take your mind of it, I know much harder done than said. If thoughts do come into your head tho, what I've found helpful is to acknowledge them but dont let them linger longer than they need to. It's so so hard, but it's ok to feel like that.

Definitely chase up the referral. I had bleeding on and off for about 10 months in 2016, was just my hormones out of whack as usual. By the time the referral came through it had stopped. Absolutely useless. Definitely get them to check for pcos tho.

Have to say though all the normal treatments for pcos did nothing for me.

Metformin did nothing except give me constant bad tummies and piles tmi, even with the extended release one. Did not help my cycles at all and was still only having one AF a year If I was lucky or the opposite and constantly bleeding. Clomid worked st 100mg but didn't result in a bfp.

Since starting the MyOva though, last August I can say I have had a semi regular cycle ever since. It brought on AF within about a week of taking it and then my cycles were about 35-42 days, gradually becoming more regular over the year, until I was either 34 or 36 cycles bang on time. But still didn't result in a bfp. Obviously hubby had issues that we only found out about last month after going private with him.

But make sure they check everything thorough xxx

 

[xMillie]

It hurts enough still not being a mum or even pregnant again before my 30th like I had always wanted.. but now with these whack cycles I just want to bang my head on the wall.

I tested this morning just to make sure I’m just late as I’ve been having some really crazy dreams the last few nights. Kinda dumb since we probably only actually dtd once or twice, didn’t at all when I was bleeding and I’ve barely felt like it since it’s stopped. But of course I got the biggest fattest no and completely stark white test.

So cd33 no period and don’t even feel like it will be here soon either.

 

[maythe4thbewit]

It hurts enough still not being a mum or even pregnant again before my 30th like I had always wanted.. but now with these whack cycles I just want to bang my head on the wall.

I tested this morning just to make sure I’m just late as I’ve been having some really crazy dreams the last few nights. Kinda dumb since we probably only actually dtd once or twice, didn’t at all when I was bleeding and I’ve barely felt like it since it’s stopped. But of course I got the biggest fattest no and completely stark white test.

So cd33 no period and don’t even feel like it will be here soon either.

Aww Millie, I'm so so sorry you are going through this. It's horrible and no one deserves it, and in my experience there was nothing anyone could say to me to make me feel better. It's horrible. It's like a constant grief.

I hope you are doing something nice for your birthday! and definitely push the drs to do tests for your cycles. I know how rubbish they are, have to push them to get help every step of the way xx

 

[xMillie]

Birthday was okay but I’m still in limbo here. Not had any sign of af.. I just wanted a break from all ttc thoughts but I’m just living in limboland

CD36.. bfn Sunday and I see no point in testing again.

I will have to call my doctors tomorrow and see what’s happened to my referral as it must’ve been about 2 weeks now.

 

[Outofsync]

Hello my PCOS got misdiagnosed for 6 years!!!!!!! Nhs just kept saying unexplained infertility. I had regularish periods every 32-35 days, no cysts, my ovulation and temp testing showed positive and a rise after ovulation but I never released eggs one of the easiest ways to diagnose it if you don’t have many symptoms is an Amh blood test if it’s really high you more than likely have PCOS - I paid privately £50 and once we knew it sped the process up still took 8 years but knowing for certain what was causing it helped plan Clomid cycles and ivf protocol better xx

 

[xMillie]

Hello my PCOS got misdiagnosed for 6 years!!!!!!! Nhs just kept saying unexplained infertility. I had regularish periods every 32-35 days, no cysts, my ovulation and temp testing showed positive and a rise after ovulation but I never released eggs one of the easiest ways to diagnose it if you don’t have many symptoms is an Amh blood test if it’s really high you more than likely have PCOS - I paid privately £50 and once we knew it sped the process up still took 8 years but knowing for certain what was causing it helped plan Clomid cycles and ivf protocol better xx

Thank you for posting x


I had an AMH test before my second ivf cycle and I can’t remember the results but I remember they were pretty average for someone my age at the time.

I’m kinda curious what it would be now as it’s been a couple of years now.. I guess if we ever do end up doing ivf again I’ll get it checked.


Tired of being unexplained though, horrible to not have any reason why it just doesn’t work and my cycles just a mess when they used to be regular ughh.


I do have a scan in a couple of weeks now to see if they can see any problems but I doubt it will give any answers

 

[Outofsync]

Thank you for posting x


I had an AMH test before my second ivf cycle and I can’t remember the results but I remember they were pretty average for someone my age at the time.

I’m kinda curious what it would be now as it’s been a couple of years now.. I guess if we ever do end up doing ivf again I’ll get it checked.


Tired of being unexplained though, horrible to not have any reason why it just doesn’t work and my cycles just a mess when they used to be regular ughh.


I do have a scan in a couple of weeks now to see if they can see any problems but I doubt it will give any answers

I went through a stage about year 6 where my periods just stopped completely I think I had got over stressed and they disappeared I know it’s easier said than done but I found taking a break for three months no testing, no temping and just dtd when felt like it helped bring them back to normal x