How did you know you had PCOS?

[Katnissx]

What signs of PCOS did you have? And also how was it diagnosed- ultrasound/bloods?

I've been wondering for a while if I could have PCOS as I have really irregular periods and have been having trouble TTC (not sure if I'm ovulating). Before this cycle my last 5 periods lasted 18 days... and then this cycle I only had 3 days of spotting which I assume was AF. I have been to the DRs about the long periods and she basically said not to worry and it's probably just my body settling down after stopping breastfeeding (but I stopped breastfeeding like 9 months ago).
I also keep getting high OPKs like every other day and another poster on my other thread said it could be a sign of PCOS, having high LH levels through your cycle which got me thinking again.
The thing is I don't have any of the other sign of PCOS when I've looked on the NHS website, so I'm worried I'll look a bit silly if I go to my dr to ask for testing for it. Just wanted to see how other people knew they had PCOS and got it diagnosed. Thank you xxx

Sorry just checked my Ovia app and it was actually 3 of my last periods that were 18 days (not 5), and I did have one period in the middle of these 3 which was 8 days long.

I would return to the GP and discuss this with them further particularly as you finished breastfeeding some months back. Do not be fobbed off here, seek proper answers. PCOS cannot be ruled out here due to your ongoing irregular cycles.

You need a diagnosis first and foremost.

PCOS is a very individualistic disorder and it can affects each woman with it very differently. I was diagnosed with this initially based on irregular cycles and a degree of hirsuitism. Blood tests clearly showed an imbalance of LH to FSH.

What is a problem for one may not be the case or so for another. The commonality though with PCO are the cystic follicles on the ovaries; these can and do disappear but are replaced by further cystic follicles. Some of these are dormant, others release hormones, one may contain an egg.

I was diagnosed with PCOS also based on internal ultrasound scans (polycystic ovaries appear to have a string of pearls appearance and can be larger than a normal size ovary which is the size of a walnut) and blood tests consistently showing an excess of luteinising hormone (LH) to that of follicle stimulation hormone (FSH). A "normal" cycle is a cycle length of between 21 and 35 days. Spotting may also be due to problems with producing progesterone. A day 2 blood test would be helpful to check and compare your LH level against that of FSH. If your cycles are irregular too, blood tests can be done according to calendar days.

Throw the OPKs away. OPKs are not recommended for use either if a woman has irregular cycles like described and you keep on getting false positive readings. Its reading the excess levels of LH.

Would suggest you keep a cycle diary noting everything like spotting and bleeds as this would also give the gynae clues.

Have a look at Verity's website:-

www.verity-pcos.org.uk/

@AttilaTheMeerkat I've only just come off my pill after 10 long years so unsure wether irregular periods are due to that or something else but I do also get the odd chin hair that I must pluck (gross!) how hairy do you have to be for it to be classed as hirsutism? Unsure whether the odd chin hair is normal

I got diagnosed around 2 years ago now.
I didn't have a period in over 4 years, had scans, bloods etc.
Had 9 weeks worth of bloods in a row, all confirmed I wasn't ovulating.
Referred to gyno, he was lovely, was put on Metformin and a different tablet to force period.
2 months after starting metformin I found out I was 4 weeks pregnant 😊
I just started off at GP, so don't give up! Good luck op

I have never been officially diagnosed. I have weight gain, facial hair and a kidney scan revealed cysts on my ovaries. I have just lived with it. I never wanted children so there wasn't any real need to investigate further.

The pill leaves your system very quickly after taking the last tablet. If anything the pill masks any underlying hormonal problems that have always been present, it does not cause irregular periods to arise.

I had a few stray hairs around my upper lip and on my chest, that to the staff was an indicator too but the blood test results and scans clinched this diagnosis for me.

@AttilaTheMeerkat thank you so much for such a detailed reply. Will definitely go back to my drs, I will really push to try and get some bloods done- may be a challenge though 🙄
What do you mean by a day 2 blood test? And also, what do you mean about going by calendar days? Do you mean like if I don't know when I'm going to ovulate or when my period is due they can just go by when they would normally be due in someone who didn't have irregular cycles? Thanks xx

A day 2 blood test would check and compare your LH level against that of FSH. With PCOS there is often an excess of LH to FSH; these two hormone levels should be about the same.

By calendar days I mean days according to the calendar month. As my periods were so irregular the blood tests were done on the 2nd, 10th and 21st of each month (but if the 2nd, 10th or 21st of that month fell over a weekend I would have the test done on the Monday).

To be diagnosed you need to meet at least two of these criteria:

Irregular periods

Blood test showing high levels of male hormone, or signs of excess such as hirsutism

Ultrasound showing polycystic ovaries

You obviously fit the first, so try asking for the blood test. Good luck

Thanks ladies for all your help.
Managed to get an appointment for later today.. wish me luck!

Hi, my symptoms were being very hairy - I have dark hair on my chin and neck that I spend ages trying to pluck out daily but I never manage to get them all and I have to wax my top lip every 2 weeks to keep on top of it. I had very irregular periods, I could go anything from 7 days to over 70 days between periods and I can put weight on very easily but find it incredibly hard to lose. I was diagnosed through a blood test and a scan. Nothing has been done since I found out, they just said yes you have PCOS then nothing.

It has never affected my fertility thankfully (I have 4 dc), the only symptom that bothers me day to day is the hair. I hate it and spend so much of my time plucking my face, it’s depressing.

I'm booked in for hormone bloods next week- TSH, LH and something else I can't remember! The Dr said it didn't matter where I am in my cycle when they take them- is that right?
Nervous now that they won't show anything and I'll still have no answers 🤦‍♀️ glad it is being looked into though.
Does anyone know if the bloods will definitely show a hormone imbalance if you have PCOS? Or is there a chance they could come back normal due to the time of month they were taken or whatever but still have PCOS?

@Kim82 that's good to hear it hasn't affected your fertility. It's a shame you don't have any treatment to help with the hairyness- sounds frustrating!
Xx

@AttilaTheMeerkat do you know if it matters where I am in my cycle when they take the hormone bloods? X

You do not really have a normal cycle so I would try and stick to monthly calendar days to have the blood tests done.

LH certainly though needs to be tested on day 2 along with FSH; that is one of the standard blood tests for those two particular hormones.

With regards to TSH there is a range, which is used for the tests. These vary sometimes which is why you must always ask what the range is, so that you can see where you are in the range.

Thank you for your reply @AttilaTheMeerkat. I hope this doesn't sound stupid.. but do you mean the bloods should be taken on my cycle day 2 (as in I would be on my period?) or do you mean taken 2 days apart? Sorry I have no idea with these types of thing lol 🙈
I just got a positive OPK yesterday and this morning and the bloods will be next Thursday so would be in the TTW. Do you think that's okay?
They haven't said anything about repeating them and they intend on doing them all on the same day x

I knew when I was 18 that I had pcos as I had blood test and scan due to pains and really random and never ending bleeding. Dianette pill helped but when I got married we were ttc and nothing happened. After 3.5 yrs I went to the Dr and East sent for scan again. I want eligibile for fertility treatment as dh has a child. The Dr agreed to let me try metformin and it changed my life. My pcos symptoms (bloating, terribly irregular cycles, nausea struggling to lose weight) all cleared up and I was pregnant with my first within 6 months. I have 3 dc now, all pretty much one after the other, I'm done having children but I am on metformin still because it really does make me feel normal. I hope you can find something that works for you!

Just to those who have it, is there any benefit to having a diagnosis if you’re not TTC? I am pretty sure I have it (overweight, hairy, irregular periods) and feel it may have been the reason I wasn’t able to breastfeed my DD. The scan I had when I was much younger was inconclusive but I’ve not pushed for any answers as I didn’t think there was any point anymore. I did have two miscarriages before DD but they were both early and I fell pregnant successfully not long after. I have the coil now and can’t say I miss having regular periods either.

Just to those who have it, is there any benefit to having a diagnosis if you’re not TTC?

Personally I don't think so, I was diagnosed in my early twenties (not TTC) and like PP, it was a case of 'You have PCOS, goodbye' (paraphrasing there). I suppose it's helpful psychologically to have a diagnosis insofar as it explains symptoms you might otherwise be wondering about. Perhaps others think differently.

I was diagnosed after a blood test. I had been having irregular periods, spotting and pain for a while I think. I had looked at PCOS symptoms previously and mentally disguarded it as a cause as the other symptoms (weight gain, hirsuitism, etc) didn't seem to fit.

raskolnikova Thank you. I don’t have a lot of faith in the local GP surgery so wouldn’t go through the hassle of asking them about it unless it would make a definite difference.

Thank you for the replies. Just an update- I had a ultrasound scan yesterday and I have lots of follicles in my left ovary and have been told it is indicative of PCOS, so looks like I have my answer finally. Thank you ladies x