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

I had a similar history but was 34 when we begun trying, I went to the GP after 6 months as I knew waiting lists and making your way through the NHS is lengthy. We got sent for a few tests with 6 months between appointments due to waiting times. I'm 36 now and only 2 months in to any actual treatment (Letrozole - an alternative to Clomid), and only on my third specialist appointment (on Thursday) so my advice to you would be go and see you GP and get the ball rolling for help, it takes ages. If you fall pregnant in the meantime then that's s bonus

@Mycrazylife85 my partner and I went to our doctor after trying to conceive in July 2018, I went through a number of tests and found out I had pcos in October 2018, we were then referred to a fertility clinic and I'm starting my second round of clomid tomorrow, so compared to other stories I've heard, in our experience just under a year from going to the doctors and having already started treatment is quite fast, if you're wanting to get the process started it's best to go as soon as possible as there will be other tests you'll have to do along the way xx good luck x

I would go to the GP as soon as possible rather than later; you already have a PCOS diagnosis and this does not go away of its own accord.

It can also take a skilled sonographer to see the cystic follicles. The cystic follicles associated with PCOS too can disappear, only to be replaced by further cystic follicles. Your periods have become irregular in nature again and you would not be wasting the GPs time in going back now. You should be referred to a subfertility unit; PCOS is a condition that should not be messed around with by GPs.

Thank you all so much ladies for taking the time to respond. Your words have given me a bit more confidence to make contact with the doctor soon. Thank you so much

I would go to the doctor sooner rather than later - it can't hurt and from experience, it takes time to do the tests, etc needed. You can still let nature take its course in the meantime.

Doctors told me the pill should have come out of my system after 4 months but I believe it was closer to a year personally. I was diagnosed with PCOS after ridiculously long cycles (up to 100 days sometimes) but I went to see the doctor after 6 months of TTC. I didn't have cysts but more the hormonal imbalances that can come with PCOS. We were referred to the fertility team at the hospital who were very helpful and did more testing.

@Pinktruffle thank you. Can I ask, have they offered anything for you to help? I'm looking into natural supplements but must admit there is so much conflicting information relating to supplements such as maca and agnus castus that I've not bothered. I feel quite rubbish today, I can't imagine the detestation that ladies feel when their journey has been a long one. I'm just sad that I'm back to irregular cycles again. Its obviously sad that periods arrive for those ttc and they feel disheartened but I can't imagine getting to the stage of having a period every month.

My Nan used to have periods 'as often as the gas bill' ...once a quarter.. seems I'm following suit.

I haven't seen much any studies about Maca and PCOS, but vitex agnus castus has been used in several studies to show marked hormone level changes. Personally, I had mild PCOS about 7/8 years ago (my memory's a bit vague about the exact results following blood tests and ovary scans, but I distinctly recall having my period only about once every couple months for a while). My GP was fairly useless with suggestions, so I did some research and tried out agnus castus and was fairly amazed at the swift results I got. No issues since.

I would recommend trying it, HOWEVER, you will want to look for higher dose versions. New regulations started coming into play regarding herbal medicines around 2011, which effectively massively reduced the dosage of a lot of versions of Agnus Castus. Old, higher dosage stock continued to be sold on for a while after, but that will have gone now. Having a search today though, I see that there do seem to be some higher dosage versions available again, so unsure if some companies have found a loophole, or whether there's been relaxed regulation since then. I would ignore any 4mg dose products anyway. It's far too low to have any effect.

I originally read up about these regulations a few years ago via this blog (link below), but it's a few years old now, so may not be up to date - there does seem to be some discussion in the comments about places to pick up higher dose versions though:

julietocallaghan.wordpress.com/2013/02/21/agnus-castus-and-pms-dont-buy-it-from-boots-or-holland-barrett-if-you-actually-want-it-to-work/

@LennyFitz thank you for your amazing message! That's so useful! I much appreciate it, thank you

@mycrazylife85 I tried Agnus Castus and it did nothing at all for me.

Not my first appointment with my specialist he recommended I take something called Inofolic. Its expensive but has been very effective and is specifically a treatment for PCOS. It helped regulate my periods, cleared up some of my PCOS symptoms (acne etc) and had me ovulating within 3 months. I buy mine from Amazon and mine is manufactured by Viridian. I also take Co-enzyme Q10 for egg quality though when whis batch runs out, I am switching to Ubiqunol which is a more effective (and expensive) form of Co-enzyme Q10. The only other thing I take is a prenatal vitamin.

That should say 'On my first appountment'

@Pinktruffle thank you. That's was really interesting and good to know. I've been taking inositol which, having had a look at the ingredients, it's got myo-inositol in it. There are different types of inositol so perhaps I'll look to give this type a go. I'm currently taking 3g worth and will eventually up it to the recommended 4g. I've been taking it since March. 😔

Here's hoping I just get a period soon... ☺️ thank you lots

@Mycrazylife85 The usual advice is you should see the GP if you haven't conceived after 6 months of trying if you are over 35 or if you have a known problem that might affect your fertility ie the PCOS. I wouldn't delay - I kept thinking I'd give it a little longer for things to happen naturally and eventually went after 11 months. Wish I'd gone sooner. We are now 2.5 years down the line. Spent a year being investigated by NHS fertility clinic and trying clomid and tamoxifen but was told by the consultant that there was nothing more they could do after that as we're not entitled to NHS ivf. She said I ought to hurry up and go for private IVF as my advancing age was against me!

Regarding supplements - I have PCO with irregular cycles but no other symptoms or abnormalities on my blood tests, so not full blown PCOS. After quite a bit of research on things that might improve egg quality, I started on Inofolic and ubiquinol same as @Pinktruffle. This was a couple of months prior to IVF starting so I didn't get much of a chance to see how it affected my natural cycle. The clinic were super impressed at how well I responded to the IVF. They got 10 good-excellent quality embryos that all made it to day 5-6 blastocyst stage which apparently is very good for my age (40). I had been told in PCO usually they collect plenty of eggs but not all of them will be of usable quality. Maybe the supplements helped!

I'm also taking a prenatal multivitamin and an omega-3/vitamin D supplement

I have PCOS. It doesn't go away on its own but the external symptoms (hair growth etc.) do seem to be managed by controlling BMI.

When I was going through IVF my consultant prescribed me Metformin. I had to pay for a private prescription the first time, but once the consultant had prescribed it, my own GP was then happy to prescribe it for me, and I continued to take it up to week 20.

I had to have ICSI too to encourage fertilisation - my eggs were good quality but had very hard shells. I don't know if this was related to the PCOS or not.

Good luck - definitely start making noises about fertility with your GP. I started the fertility treadmill when I was 34 and I didn't have a baby until I was 40.

You won’t get cysts if you’ve been on the right pill. That’s why they use it for PCOS sufferers. You need a referral to a gaenocologist as they can diagnose pcos based on blood tests etc which the GP may not know about.

I was diagnosed based on cysts , facial hair, LH being higher than FSH and low progesterone. My androgens were fine but in cases of hair loss like yours they may be raised.

But yes Metformin + Inosutol + Pregnacare Max + a high protein / fat (and low carb) diet + exercise really helped me.

Having said nothing was happening, not even having been on inositol, I had my first positive OPK. I don't know what made me test as I hadn't bothered in ages. I don't know if it is a coincidence that I have upped my inisitol of not. I was thrilled!

PCOS can cause positive OPKs as we tend to have high Lh. I was getting them even when I wasn’t ovulating and when I checked the back of the packet in the instructions it said not to use if you have PCOS. Even temping doesn’t workZ

I would be cautious here; OPKs are PCOS are uneasy bedfellows. These kits measure LH levels and these are often elevated when it comes to PCOS. They also work on two misleading principles; that a rise in LH is followed by ovulation and that there is only one rise in LH every month (both are not true).

It may well be that the kit has read this elevated reading and given you therefore a false positive result.

Thank you both, I'll keep a cautious mind but have never had a sniff of a positive before. I'll see if I get my AF soon l, if not I'll chuck the rest out ☺️

Another one to ask your doctor about is CoQ10 which has some research on it for PCOS support.

Oh, whoops, CoQ10 was already mentioned. Ubiquinol is the reduced, active form, and some prefer this. And, a form that is water and fat-soluble absorbs better.

Hi everyone. I suffered a miscarriage last October and have been trying again since November with no luck. I had two periods December and January and then nothing until the start of May - started taking Inisitol. Is anyone else on this and if so when did you start to see regularity with your periods? Thanks in advance.

@laurendanielle I've been taking it for around 6 weeks but too early to tell. I came off the pill in January and waited 74 days for my first period, and only period so far, in April. I think I ovulated 8 days ago so am giving it another week to see if I imagined it all or not and if a period arrives. If it does arrive on, say the 'typical' day 14, I'll be in day 57 which would be an improvement 😏😂😏

@Mycrazylife85 I’ve been taking it for 4 weeks so far so definately too early to tell. I’m on cycle day 26 now but I’m used to 90+ so no idea what this cycle is going to bring. Fingers crossed you ovulated, you will have to let me know x