Misdiagnosed with PCOS - A cautionary tale!

[Catqz23]

Hi all,

Please see below in quote marks my first post on this forum which I posted 6 months ago distraughtly after suddenly being diagnosed with PCOS for context of what my original symptoms were.

I did not trust the original diagnosis as 1)I was not seen in person 2) the blood test was done at a random time of my cycle 3) why did I have completely normal periods until I was 20? so I decided to go to a private gyno. I have just received my blood test results from the private hospital which says all my hormone levels are completely normal and I also had an ultrasound at the same hospital which found my ovaries were also without cysts. Basically I have post pill amenorrhea which the gyno said can take up to 18 MONTHS to go away after stopping the pill (my periods are now slowly getting more regular after 12 months). I'm deeply disappointed in my local GP and hospital over this as I was told to restart the pill for life and to get fertility treatment I clearly don't need.

I know 99% of people on here will have been correctly been diagnosed with PCOS, but someone (like me) is part of that 1% and if something doesn't add up with your diagnosis please don't give up. I'm extremely lucky I can afford to pay for private doctors, I'm really sorry for anyone who has been misdiagnosed and cannot pay.

****FIRST POST**** """"Hi, I was recently quite suddenly diagnosed with PCOS, but I feel like it may have been too quick. Due to Covid I didn't see the doctor in person so I told them my symptoms (see below background info) they suggested I have a Full Blood Count test which I did, then after this they immediately diagnosed me with PCOS. It says on the NHS website that other causes should be ruled out first so I'm a bit surprised to be honest.

To give you guys some background I'm quite lean with a BMI of 18-19, I went on the pill at 20 and previous to this had periods like clockwork (and no PCOS symptoms at all), since coming off the pill after 4 years, 6 months ago, I've had irregular and/or absent periods and I noticed I developed a tiny amount of upper lip hair but I didn't think this was that strange due to all the hormonal changes that happen when coming off the pill. I found when I went on the pill I was really sensitive to the hormones, it gave me thinning hair, morning sickness, hormonal acne rather, all of which I'd never had before.

I was wondering what tests and how many tests other people had and if other causes were ruled out? I just want to be sure..."""""****

[LisaEB]

Thanks, for this but I was diagnosed with a scan and mine has cleared up and the cysts aren't there anymore. So even if you are diagnosed doesn't mean your body doesn't change overtime. You may have never had it, but even if you didn't it doesn't mean you can't live a normal life and have children. You also weren't suffering from the effects that some do, such as excess hair, spots etc, so those are some of the day to day things people can deal with. It just shows if your not happy with your GP, just get a second opinion.

[Ashfab76]

Thanks for sharing your story. I was also initially misdiagnosed for PCOS. Classic symptoms, excess facial hair, acne, irregular periods. All seemed to have started within 12-18months before I went to my GP. I had tried some home treatments myself, revised my diet, lost weight, got fit which was great but I was still experiencing the symptoms, so decided to speak to GP. On hearing my symptoms I was diagnosed with PCOS, also without being seen. I requested for blood tests and scan, as I didn’t feel comfortable with the diagnosis just like that on the phone, and I was already prescribed pills, which made things worse. Blood test came back all clear same as scan. I then sought help privately, and turned out I’m peri menopausal! Told by GP I was too young for that at 44yrs, started HRT and symptoms have cleared up and feeling much more myself again.

[Catqz23 in reply to Ashfab76]

That's terrible that they just diagnosed you over the phone without doing any tests! Were your symptoms triggered by something, such as stopping hormonal contraceptives or just starting randomly? Seem so weird what your GP said about being too young as the NHS website literally says "45 - 55 years or as early as 40" it really does really make me worry who we should trust nowadays 😩

[Ashfab76 in reply to Catqz23]

I wasn’t on any contraceptives, to be honest not entirely sure what triggered my symptoms, just started noticing my periods becoming irregular when it used to be like clockwork. And my skin started getting worse not responding to my normal face care products, it was just so bizarre! GP diagnosed PCOS before any tests, I requested the tests and they came back clear. Unfortunately we have to our homework, not just take the doctors word for it without proof of diagnosis-that’s what I’ve learnt from this.

[Bluelady-sing]

Transvaginal scan

[Catqz23 in reply to Bluelady-sing]

What for?