TTC with PCOS (Thread #3)

[RoseBud2015]

If you have been diagnosed with PCOS and would like a small group of very friendly ladies in the same position as you to talk to, then this is the thread for you!

You can find our first thread >>>>>>>> HERE

You can find our second thread >>>>>>>>> HERE

You can find the stats >>>>>HERE

rose that's amazing news well done you!! How exciting. What is FF and do I need to know about it?

Scrap that question I have googled and now know the answer!

Wow Clare congrats, that's so amazing!

OMFG Rose YIPPEE!!! Go go your ovaries, so excited for you!

It's been quite a week for DH and I. It's weird, obv we're in IVF limbo waiting for our FET, but DH and I are wondering if it's worth asking our consultant about doing another stims cycle instead of going straight into a FET with our batch on ice.

We only got 6 mature eggs, and as I'm likely to need any transfer to be a FET rather than in a fresh cycle, because of my crappy lining, whether it's worth doing another stims cycle and batching both lots of eggs together so we have more to work with for transfer in a subsequent FET. i.e instead of doing FET-Fresh-FET (assuming that this first cycle isn't going to work, with only 6 eggs), doing Fresh-FET...and if we were really really lucky, getting something for the freezer.

We're minded to try and bank as much as we can while I'm 33(nearly 34) and seem to be able to respond to stims - given my high FSH/low AMH I could be in menopause in 2 years time! Feels like rather than making hay while the sun shines, we need to try and make hay before the sun sets.

Dr Sher in the US is a big advocate of staggered IVF w/ embryo banking and CGH testing of embryos for women with severely diminished reserves, and we have to say it makes a lot of sense...

Are we mad?

banana I think it makes complete sense to bank as many eggs/embryos as you can. It was suggested to me to have IVF in the 1st place rather then clomid if I wanted more then 1 child, the Dr said she could get me pregnant once but as I'm 34 maybe not again. Every fertilised egg only has 25% chance of implanting and becoming an embryo in a woman without fertility problems. The more eggs stored the higher your chance.

Stealthbanana, I hope your arm has recovered! Have you had the results back yet?
Freddie, enjoy your hen do!
Eighty, how long do you have to wait to know if the provera has worked? I was prescribed the pill rather than a progesterone challenge to take ahead of clomid (but haven't been able to proceed because of my HSG result). So there are always other options! Your body's not broken, it just needs reminding of what to do .
Clarelily congratulations! That is fantastic news. Thanks for coming back to update- it's great to hear a success story.
Rosebud yay for ovulation! That's fantastic. Do you think you DTD at the right times?
Welcome fete and sorry you are in the same boat. I think controlling blood sugar levels is meant to be the key, not necessarily losing any weight, if you're already a healthy weight. Great that you think the acupuncture might be helping.
Bananafish if you can tolerate the meds and afford the fresh cycle, then it sounds like there might be very good reasons for doing it. Can you get a phone consult with your doctor about it?

As for me, my exciting news is that AF arrived yesterday! My first one since last pill withdrawal bleed 14 months ago. I had noticed CM a couple of weeks ago but didn't want to get my hopes up. Have tracked some temps this month though and it also makes me think I actually ovulated. Anyway, it seems like maybe all the prodding around in the operation to remove my ovarian cyst might have kickstarted something! (AF arrived exactly four weeks after the op). It might be a one-off, who knows. And I still have the minor issue of the blocked tubes. But I am so glad that my body is trying to something normally

Hello ladies, good luck and baby dust to all of you. I have PCOS and have had a long 5 year journey involving lots of Clomid, tamoxifen, 2 miscarriages, failed IVF, but am currently 25 weeks pregnant conceived sort of naturally (I think the failed IVF stirred things up a bit).

I've found there are lots of supplements that can help with PCOS, alongside a low GI diet. A good one that I have found is n-acetyl cysteine or NAC. There's an article here about its benefits and the different doses that were used in scientific studies.

www.myinformedlife.co.uk/got-the-nac-for-pcos/

The studies found it helped insulin sensitivity / reduced insulin resistance, reduced hyperinsulinemia, helped with fertile cervical mucous and improved the success rate of Clomid when taken alongside it. If you look at the stats in the studies it apparently made every one of a group of 8 women ovulate. Also, in the study with Clomid it increased the ovulation rate to 50% from 1%. Also, a fifth of the women got pregnant taking Clomid and NAC whereas just taking Clomid none of them did (the study used just women who were Clomid resistant).

Thanks Rosebud and Banana, everything you said about DH and all the information does sound familiar. Great news on your eggs Banana, it's such a shame about your lining and DH but I'm hoping next time will be it for you. I completely follow your thinking about getting as many eggs as poss now whilst you are responding- it makes sense! Congrats Rose on your ov, fantastic news!! Our bodies can surprise us sometimes

Great news about AF for you too Fee! Like you say, it does help to know your body is trying and it must be great after waiting so long

Congrats Clare. Great to hear a success story! Best of luck with your pregnancy

Hope you enjoy the hen do Freddie. I know TTC tends to take over/ influence everything but you should let your hair down!

Welcome to the thread Eightyeight and Village Fete. As the others have said, we're all in this together and I've found chatting with other ladies a great help. Just a shame you have to go through all this to get to be part of it. If you know nothing about PCOS Village, I'd advise getting as much information as you can to start with. You say you have no idea about ov, have you ever monitored your cycles or tracked them at all? Also, did the consultant say why they were so sure you don't ov every month?

Hi Chudders, congratulations on your pregnancy! I read the information on the link, as I've never heard of NAC. Have you used this yourself? Is it often prescribed?

Banana I too would bank as many embryos as you can - if you feel ok w all the medications then go for it!

Fee hurrah for AF turning up! That's great news. Hopefully it's the start of good things for you.

Rosebud YES you ov'd! That's awesome. Fist bump!

Village - the only way to know if you ovulate is to have the day 21 bloods done every month. But opks can help too.

AFM, I saw the gynae last night. The bad news, which I was expecting, is that I definitely didn't ovulate. The good news, though, is that she's agreed to start me on clomid next cycle whilst I wait for my appointment at ARGC! So I have the prescription for 50mg. Am really excited. I've always felt I'd end up here so it's good to get started.

Hi MrsC and stealth Well going in to the see the consultant and being told I had PCOS, I guess I wasn't expecting it, and there wasn't time to ask enough questions. He said something about insulin production & also said I don't ov every month. I have used clearblue opk once before & that never gave me peak days, only high days, the consultant said this would confirm I didn't ov that month. I had day 21 bloods done in May, they confirmed I ov'd (79.6 was the result) I have purchased a clearblue advanced fertility monitor, am I correct in thinking that if that tells me I have peak days then I have ov'd that month? I do track my cycles. They vary between 30 & 37 days. They used to be 46 days! But i've had them be 30 days twice this year, sl I guess that's good?

Yep it sounds like you have a mix of months - sometimes you ovulate and sometimes you don't. The problem is that gives you less chances in a year to get pregnant - especially when you have long cycles too! I think if your cycles are longer than 35 days it's very unlikely you ovulate that cycle.

Did the consultant tell you what happens next?? I can imagine it was a bit of a shock.

Ps MrsC I scanned your post and spent ages trying to figure out where the "PCOS Village" was - duh!

Great news on getting Clomid Stealth, FX for you for next cycle! I've got the same thought, I think Clomid will be it for me, so I'm just keen to get started on it too. Hopefully getting it at my next app in 3 weeks time. Sorry for the confusion re PCOS Village

Hi everyone, I've been reading every day but I had to duck out for a while. Every bit of energy has been spent chasing the NHS (which from referring me for clomid at start of Aug has taken 10 WEEKS of them losing letters, losing appointments and eventually making me lose my patience) til last night, when I finally took my first 50mg tab. I've also been busy hosting baby showers and avoiding christenings...

to everyone, I think we all deserve them.

Eighty I've taken provera twice and didn't respond either time. I heard about 10% of women don't. Norethisterone is another version of progesterone, which has a better success rate. My docs tell me I'm not responding because my lining is too thin - so there's nothing there to shed IFSWIM. Of course they've now put me on clomid, with minimal monitoring, and clomid isn't known for helping the lining, so god knows what will happen...

Bananafish please may I tap your encyclopedic knowledge of supplements? I'm on ordinary Pregnacare, omega 3, inositol, CoQ10. Any suggestions for what can help to improve womb lining? I'm considering the NAC (mentioned upthread).

Village I would avoid trying to lose weight if you're a healthy size 12. The BMI sweet spot for getting and staying pregnant seems to be at the higher levels of 'normal' BMI and the lower levels of 'overweight' BMI. As every doctor keeps telling me, babies like a bit of fat to snuggle into during pregnancy.

Rosebud yay for your ovaries!

Happy Saturday everyone!

Village It's promising to track ov through OPKS or your CBFM, the only annoying thing is they can't tell you that you definitely ov'd, only that your body was gearing up to. Blood tests and BBT temping to show a sustained thermal shift are the only ways to confirm ov. Also there can be false positives depending on whether your LH level is high due to PCOS. Have you had the day 2-3 bloods done to check levels of FSH and LH? It is promising that your cycles are getting shorter and it equals more chances too! I'm currently shortening my cycles and whilst I'm not yet pg, it does make me feel better and that things are going in the right direction. What's the next step for you? Has the consultant sent you away to keep trying, are you having more tests etc?

Hi Oranges. I wondered what happened there as I submitted my second post at a similar time and started reading yours thinking it was the one I'd just done! Haha

I know what you mean about the NHS, they've lost my blood test results twice so I've had to have them redone. Also I've been seeing the hospital for 16 months re TTC and despite the various bloods, the consultant only did one day 2-3 test for FSH/ LH, despite a nurse telling me this was wrong and it should have been retested every time I had a test! Pleased that they finally got their act together though and got you started on Clomid. I take it that it's your first time on it? Hope it works for you! Happy Saturday to you too!

Hi Mrs C, yup it is my first time. They've been dragging their heels because they can't decide if I've got PCOS, hypothalamic amenorrhoea, or some nightmare mix of both. So far I've put on over a stone (at their request), my lovely PCOS acne has come back, and I still haven't seen AF since I came off the pill a year ago. I'm grumpy, spotty, and having clomid hot flashes. I can't tell you how much DH is looking forward to DTD with me

Hi ladies. Congratulations clare I hope you have a happy and healthy pregnancy.

Hurray for ovulation rose what a clever body you have

And hurray for AF fee I would be just as thrilled as you if my AF turned up!

Welcome village although sorry you are here.

Great to hear you are started on clomid oranges and stealth I really hope it does the trick for you both. What monitoring are you having oranges ?

I think my AF is meant to arrive a few days after finishing the course of provera tablets but I have to phone the consultant if it doesn't. I think he is quite keen for me to have a bleed so maybe he'll use Norethisterone or the pill if provera is unsuccessful again. Ugh. I'll just have to wait and see.

stealth great news on getting Clomid - keeping everything crossed for you

Feefee hurrah for AF!

Chudders huge congrats! Hope your pregnancy is going well, so excited for you. I read loads about NAC too - I found this a really useful summary of various research, which seemed to show how very beneficial it can be sites.google.com/site/miscarriageresearch/supplements-and-miscarriage/n-acetyl-cysteine

village to echo what Oranges said about the weight issue, it sounds like you’re an optimal weight, and no need to try to lose or gain.

Oranges great work on putting on the weight - I was told the same by my consultant. It’s taken a while but I got the stone on in the end - he said even being 10% underweight could have a significant impact on fertility. I was told to get to a minimum BMI of 18, preferably 18.5, and ideally 19 (NHS criteria for IVF funding is minimum BMI of 19)

Re: supplements for lining, I’ve read a lot about what is supposed to help, although I’m not the best advert for any of it, as my lining has been a consistent issue throughout my natural, Clomid and IVF cycles, so my lining seems to need the big guns of oestrogen supplementation to have any hope at all! Those supps sound like a great mix. I have been taking Vitamin E for endometrial lining, as there seems to be some evidence it can help (and maybe it did help me, as maybe it would have been even thinner without it)

www.ncbi.nlm.nih.gov/pubmed/19200982 &
www.ncbi.nlm.nih.gov/pubmed/22302530 (which mentions taking it as an adjuvant to Clomid)

I can’t remember the detail, but the ‘It starts with the egg’ book had some pretty compelling evidence for why not to take L-Arginine, which is why I haven’t taken it. I’ll have a gander again, as I can’t remember exactly why…

Most of the other supplements I’ve been taking are more IVF or diminshed ovarian-reserve related

DHEA - for egg quality and follicle recruitment. Absolutely contraindicated for PCOS as it’s an androgen, but my weirdo PCOS meant my ovaries got used to too much testosterone when I had polycystic ovaries, and then transitioned to a state of not enough testosterone (and hence all my follicles dried up).

Melatonin, Resveratrol & N-Acetyl Cysteine - antioxidants for egg quality (NAC also excellent for taking Clomid, as per the above)

Vitamin D - NICE recommended doses are in Pregnacare, so that’s all covered for you. There’s some evidence Vitamin D can improve IVF outcomes, so I’ve been on super high dose capsules, but unless you’ve had your levels tested and are deficient, Pregnacare should be a-OK

I also take prescription strength folic acid, but that’s because I’m epileptic, so again, Pregnacare has that covered.

I’m absolutely rattling!! I'm a massive sceptic about the supplements industry, despite all the above - but I'm pretty desperate, so scepticism goes out the window when 'I'll try anything' comes into play!

Oh dear Oranges! The side effects are awful aren't they? The things we have to go through! I'm going the other way, I need to lose weight and have been doing. Well done for putting on your stone, I've had that problem but I have experienced it the other way and I'm sure it's tough purposely trying to put on weight that isn't there naturally for you. It will all be worth it though.

FX the Provera works for you Eighty I can guess that the consultant is keen for you to have a bleed so they can get on with tests? What happens next for you after AF arrives?

Rosebud thank you and all natural!

Thank you all, Banana, Fee, MrsC, Eighty xxx

Morning everyone

May I ask what kind of diet you're following? (Looking at bananafish as I have faith she will have researched it). I know 'healthy' and 'high protein', but I'm struggling to see what that means in reality - is there a certain weight of protein you need to hit a day? So far I've read that the ideal is:

• not too much meat - vegetable protein is best (and I don't eat meat anyway)
• very little soy - not good when ttc
• not too much fibre - which contradicts the whole veggie protein thing above! - because it reduces risk of ovulating
• not too much fish (risk of mercury poisoning - backed up by NHS)
• no low fat dairy (seems to reduce body's chance of ovulating)

I'm running out of protein types! I seem to be existing on limited pulses, eggs, full fat cheese, peanut butter, as much fish/seafood as the NHS guidelines allow. However I'm a hungry person and I seem to be eating way more of the above than is good for me to stop me losing weight and to stop me reaching for carbs. Any tips or diet sheets?

Like with the supplements, I know I'm overfocusing on this because it is something I can control, whereas I can't control ovulation or the delightful acne that has taken over my face. (I am also distracting myself with acne treatments research...may head over to S&B boards now.)

Bananafish thank you so so much for the supplements summary, that's really helpful! Congrats on your weight gain. The docs wouldn't treat me on the NHS til my BMI was 20. Have you made the decision about your next step?

MrsC thank you for being so kind and listening to me moan yesterday

Eighty The NHS only gives progesterone tests for clomid monitoring round here. They are also strict on the number of rounds - so you only get 6 rounds in total, even if it doesn't work til 150mg. Because I've failed provera twice, they told me to start clomid without a bleed - we just had to abstain from TTC for two weeks, then have two negative HPTs. But she says if clomid doesn't work for me soon, I will have to do pill/norethisterone to induce a bleed before continuing with clomid. What about you, have they given you a long term plan?

Stealth have you started clomid yet?

Welcome Village How old are you? Are you currently taking any meds? It's great that your bloods are confirming ov! At least that is something positive and a good first step! If you have follicle tracking with the clomid then this helps to reduce the risk of multiple pregnancy- personally I wouldn't let the Consultant fob you off with that! If he doesn't think you're ov'ing every time then he really should give you something to help you become more regular. I think you should start temping to see how regularly you are ov'ing- I have found it so so useful and have used it to prove my point to my consultant on a number of occasions

Banana I don't think you're mad at all for thinking about egg/embryo banking- in your circumstances I think that is probably the most reassuring thing you can do!

Fee Woop for AF! She took her time! lol We DTD the eve before ov- so timed it perfectly! (DH has low sperm count so having sex too reguLarly would be counter productive for us around ov time) So we are def in with some sort of chance

Stealth That's great news about the 50mg clomid! Glad things are moving along nicely for you now, and the clomid will keep you nice and preoccupied until your IVF appointment- perfect!

The countdown is on MrsC- I really hope the next 3 weeks goes quickly for you!

Oranges Welcome back! I feel your pain with the referral letters getting lost. It happened to me too and I had a full-on breakdown on the telephone about it. Luckily my GP's PA was very helpful and made sure that I didn't get put to the back of the list again (after a 1-2 week wait for an appointment, turning into a 12 week wait! ) But none of this is helpful when we are already so stressed! Hurray for finally getting clomid though!!! Woop! You must be so relieved.

AFM- 6DPO with my temps remaining nice and high (36.8), so there is now no doubt in my mind that I defo ov'ed by myself. I am so proud of my little ovaries I'm desperately trying not to over analyse every bloody twinge and pain but it is so so hard! MUST.REMAIN.LEVEL.HEADED!

oranges no I'll start when I next get my period - I'm in cd32 now, and usually it turns up by cd45ish (other than my 1, horror, 60 day cycle) so am hoping I'll start in the next couple of weeks. I'll be having ultrasound monitoring from day 9 onwards. The nhs sounds absolutely horrific, I can't believe they lose tests!!

As for diet, I've been told my cholesterol is at the high end of the range and I need to watch my fat intake. Am getting confused about what I'm actually allowed to eat!!

Hi mrsc as I'm ttc DC3 the consultant isn't redoing any of the usual tests as I had them all about 4/5 years ago and he doesn't think anything will have changed. Once AF finally arrives I will be back on 100mg of clomid and hopefully I will respond to it this time. I think my consultant is keen for me to have an AF as even if not ttc you should have a bleed a few times a year. In my early - mid twenties I was given the pill for this even though PCOS hadn't been diagnosed (back then I had no idea of the troubles ahead!).

oranges I have only ever had progesterone blood tests on clomid too which I have found frustrating in the past. I've heard that most doctors will prescribe it for up to 12 months though. I will have my fingers crossed that it works for you at 50mg. Sounds like you have had a tough time with the NHS and effects of clomid/pcos. It's really draining isn't it?

And I have no idea of a long term plan!! My appointments with the consultant are incredibly quick and I'm usually on the way home before I compose myself enough to think of questions!

Very excited for you rose I'm proud of your ovaries too! Keep us posted!

Ah, you see eightyeight that's why you have to hang out here - you learn so much that by the time you get to a consultant appointment you're just asking questions to confirm what you already know rather than the other way round