PCOS advice

[Mycrazylife85]

I'm 33 nearly 34, and diagnosed with PCOS at 16 from ultrasounds and bloods, I was put on the pill until January when I came off. I waited 74 days until something which covered a pantry liner for a few days and now I'm nearing 40 plus days.

I last had a scan around three years ago and they said I had no sign of PCOS. This must mean I had no cysts as I still struggle with facial hair and thinning head hair- I can't believe for one moment it's vanished!.

We are currently 'letting nature take its course' but I am thinking that at some point I may need to see a doctor. I just wondered how long do people think I should wait until I go? I'm aware it can take a year off the pill to cycles back. I just want to help myself as much as possible but don't want the doctors to think I'm being a nuisance. I'm only 5 months post pill.

BMI of 22, currently taking my vitamins and inositol (3000mg) thank you ladies

Go sooner rather than later I waited until I was 35. My hospital has been great - mix of clomid and ivf. I have however had a number of complicated miscarriages and am currently waiting for things to settle before trying again - I'll be 40 in 6 months and still haven't had a successful pregnancy and so wish I had asked for help sooner. Good luck

Oh and do not trust opks! I used them (recommended by hospital) when having rounds of clomid. On one day it said I had ovulated. By chance I had a scan booked in that day- I went to the appointment to be told I hadn't ovulated at all and they gave me a trigger injection to force it.

I don't use opks either, in my experience they were never right, I just stick to the sex every other day throughout the month method and am told if I ovulated or not at my scans and blood tests xx

@laurendanielle so 13 days after I wrote I had my first positive OPK test, (12 days after predicted ovulation day), my period arrived (albeit VERY light) It is day 56, but that's 18 days less than my last one 😂

Similar. Have pcos all my life undiagnosed. On pill for years came off then periods not regular.

We struggled conceiving so went for tests (dh had issues) I still wasn’t told I had PcOS. On ivf list at 37 when I had a call from a research team at the hospital saying I could get further up the list if they let them investigate something or other as I have pcos! I was appalled.

Now baring in mind I had a few cysts, I did get pregnant without IVF and they just monitored the cysts in terms of size.

(Once I gave birth my periods went to 28 day cycle for first time ever).

I think my generation (noting I’m going through menopause) weren’t well informed about PCOS.

I’d get the ball rolling. It was my dh issues rather than my PCOS. The only frustrating thing was that they do bloods mid cycle but when you’re irregular how can you tell - so it was hit and miss.

Best of luck - have hope. I have a younger friend who’s had two children naturally and her PCos is very evident (weight, very hairy etc).

I wish I’d known more about PCOS when I was younger. But late for me now (assuming you can’t have it post menopause?).

Best of everything to you.

I have PCOS, diagnosed due to irregular periods, excess hair and cysts on ovaries (my BMI was 19). I follow a gluten free diet anyway as I am a coeliac, and when we had been TTC for a few months I cut out sugar, having read about the links between PCOS and insulin resistance. I dont know if it was coincidence or not but two months after cutting sugar and processed food, i ovulated on day 16 for this first time ever and conceived my beautiful now 18 month old DS.

Hi all I'm brand new here, just been at doctor and told I might/probably have PCOS based on lack of periods since coming off the pill and hormone levels in blood test. Need a second blood test to confirm diagnosis but GP has also referred me to gynaecologist.
I don't seem to have any of the other symptoms of PCOS - my cycles were terrible as a teenager and I've been on the pill for 16 years, initially to regulate my cycles. I'm vegan already which seems to account for most of the dietary advice, and I'm not overweight.
We're only 7 months into trying but I'm just trying to get my head around this potential diagnosis and what all the steps might be ahead of us...thank you all for sharing your experiences, it's very helpful. Are there any other PCOS threads/groups here? I'm struggling a little to find my way around. Thank you.

@HankSYB welcome,
Sounds similar to my experience I had really bad periods as a teenager, was always convinced I had endometriosis as my mum and nan had it, they would never diagnose me with anything just put me on the pill, and when I came off in 2017 to start trying for a baby they diagnosed me with pcos last year, we tried all the dietary things and folic acid, but I am now on my 3rd cycle of clomid, so hoping this will be the miracle!
Good luck with everything, hopefully it will happen for you without tests and medication! X

@AmyMaria2 Thanks so much for responding and your lovely message, it does sound like a very similar situation. If and when I do get a confirmed diagnosis, at least it's fairly early in our journey.
How are you finding clomid? Wishing you all the luck in the world that it will happen for you soon x

@HankSYB yes it's definitely an advantage to know what's going on earlier rather than later. I don't find the clomid to bad so far, I find it hard to sleep as early as I usually would I think it keeps me up abit, and I usually get a headache on the last few days, other than that it's okay, my dosage is changing to 100mg tomorrow though rather than 50mg, so hoping I don't get worse symptoms! Good pick & thanks so much x

Just now joining this thread. Another one you may want to ask your doctor about is CoQ10. There is some research on it for PCOS and fertility support.

I would go sooner rather than later - I came off the pill March 2017 and still no signs of periods. Gynaecologist has said I have to get bmi under 30 before they can look at anything and have left me to it.

Hi @Pinkroseuk
I am in a very similar situation to you in that the NHS won't touch me until I've got my BMI down.
But I would recommend Agnus Castus (eBay or Amazon) as that did the trick for getting my cycles regular again. I was having cycles ranging from 38-45 and it get them down to 28-32.
I hope this helps x

Thanks @LifeOfRiley63 - did they start your periods to or were they just irregular?
Thanks

@Pinkroseuk It took 114 days for my first bleed after coming off cerelle (pill) without agnus castus. My cycles were around 40 days until I started AC.

@LifeOfRiley63 this is interesting. I came off the pill in January. First period was day 74, the second 55 and currently on day 22 and not a sniff of ovulation. I'm certain it'll be another 50plus again. No cramps, back ache or stomach pains. No ovary twitches, nothing. Currently taking myo-inositol 3g but will try this now. How much were you taking? Thought if I get another 50 plus-er I'm going to seek advice from the doctors

Is anyone else here on clomid? I'm starting my 4th month tomorrow, feeling down! My consultant thinks it hasn't worked as my pcos isn't accepting clomid. Has anyone else tied any other treatments?

Hi @AmyMaria2
I have PCOS and my cycles are extremely irregular, every 3-4 months. Last year I started taking Inofolic which was recommended to my sister by a fertility specialist. I started this last year, and straight away it regulated my cycles to 30-35 days. It was honestly like a miracle.

Sadly last month we had a missed miscarriage with our first pregnancy. I was devastated. But we have decided to try again as soon as possible.

I have just bought an Ava bracelet, although I know it’s not for PCOS, the Infoloic has regulated my cycles so I am giving it a go after reading great reviews. I’ll let you know how it goes!

I would HIGHLY recommend Inofolic, although a little pricey, it was amazing for me and worked straight away!

Jess x