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PCOS UK (Verity)
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Diagnosis!

How long did it take forever to be diagnosed and what medical plan was put in place after?

I waited from when I was 13/14 all the way to up 20 and I’ve got my first appointment for any sort of treatment tomorrow but I really don’t know what to expect after that..

*not my picture but I just love what it is

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In 2011 although only a provisional diagnosis. I was 35. No care except 1 scan and bloods

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I’ve only had diagnosis from word, but no bloods or anything yet although I have a mirena cool fitting tomorrow to sort the amount of periods I have!

Would you suggest asking for scans and bloods?

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I’ve diagnosed with PCOS only by scan, no treatment yet

Do you ladies got lower abdominal pain symptoms?

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I get pain 90% of the time!

I’ve only been diagnosed by word, had no tests done yet 🙄

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Mmm really! Me too

is it lower abdominal pain with constant pain left and right?

Worst when laying and sitting? What else your symptoms?

But my Dr said PCOS doesn’t cause pain, I asked ladies here in community they also had the same pain

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Yeah it’s both sides and lower, constantly getting numb legs from the pain too only when it’s at its worst though!

My main symptoms which they said made it that was my mad hairiness, missed periods/too many in a month and the fact I get stupid amounts of pain during and after a period..in all fairness I do want to look at a rediagnosis or a second opinion as that only came from one person and obviously it’s always best to get some sort of tears done for a definitive answer :)

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Period wise, mine started with brown spoting and not so heavy period (sorry TMI)

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Never TMI, I started with dodgy periods and missed 10 months when I was 14 and that was just the beginning of it all!

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Do you work or studying? How do you manage you everyday routine?

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I don’t work, I currently work from home! But joint with my mental health it means I can’t really do much more..every day routine wise though I suffer it our while I’m using CBD vapes and taking cocodamol which I’ve been on for 6 years for it!

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It’s crazy how many different stories there are about being diagnosed and such a shame there is a variation of treatment and diagnosis! Not fair really. I was diagnosed aged 25. I only started period aged 16 and had very irregular periods but shortly after went on the pill which masks a lot of symptoms. Only went to doc after coming off pill to try for a baby and no periods returned. For my diagnosis he did general medical background - asked questions around excess hair, tummy pain, period history. He then did blood test and then ultrasound to confirm. My doc said they tend to use a 3 prong approach: history, bloods and ultrasound as just using one of those methods can be unreliable. When I was on the pill I had an ultrasound after a ruptured appendix and they said I had normal ovaries (albeit not looking for that) and apparently the pill can make them appear normal. Whereas after I was off the pill the sonographee said they were really enlarged and Polycystic. I haven’t had pain with PCOS but really sympathise for you as that must be awful on top of everything else we have to put up with!! Certainly push your doctor for extra tests if they aren’t being forthcoming. Hope it goes well x

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