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

Oh banana, how seriously frustrating for you How does your DH feel? I'm so surprised they're telling you to go back on the pill. Obviously they don't feel like it has long term effects on your body. I thought it could.

I didn't even know it was possible to ovulate twice I guess it is reassuring to know your body can do that part!

Omg banana I can't believe it! This is just going from the sublime to the ridiculous. FFS! at least you can have a couple of drinks over Christmas this way

So frustrated for you. Does the doc have any idea why this is happening? You're like a nuclear chicken laying twice in a month!

Woody I do use opks although so far I haven't had much luck- positives on cycles with no ov, and no positives on cycles with confirmed ov!!!! But I know others on here have had luck so its worth a try.

Banana You make an excellent point about an IVF cycle involving clomid and it thinning my lining. I have emailed my Czech doctor to see what their advice is on this- they may want to wait and see what my scans show or they may suggest I split my IVF into two separate trips and two separate cycles. Do you know if embryos can be frozen on one cycle and used in the following cycle? Or is there a minimum freeze period?
So sorry to hear about your continued poor luck What a bloody joke! I can only imagine your absolute fist-clenching frustration. F*k you ovaries!!! F*k you!!! On the positive side, you get to join me in a new year transfer....... every cloud....... xxx

Peardrop Sorry you didn't get any answers Did you manage to make a fertility appointment? Do you think the doc referred you without your blood results? Things happen soooooooo slowly throughout this process- very very frustrating- stick with it though lovely, it WILL happen x

I got my Reprofit prescription via email today. Got straight on it getting quotes from various pharmacies and so far Reprofit's own pharmacy comes out cheapest at under £200- the benefits of a mini-IVF, low stims cycle- woop!

Bannana Poor you bloody typical eh!

Rose how exciting things are moving ahead full steam. And what a bargain (its all relative!)

Isit Welcome back!

I am really peeved popped in to see the nurse today to get a sample pot for DH. She said that she didn't expect me to respond to the dosage of injections they will start me on given I needed 150 Clomid but their protocol states they have do start everyone on the same dosage. What on earth is the point if they know it wont work!? I only have three tries of it. With this stupid protocol I only have two goes really and all those scans are injections are a total waste of time. I am really fed up.

Freddie not sure what the nurse means, but not responding to Clomid has no bearing on whether you'll respond to injectables. If anything the more clomid resistant you are the lower the dose of stims you often need to be on, as the more severe the PCOS the more likely you are to go off like rockets with too high a dose of injectables. I honestly think she's talking out of her arse and there's no reason that not responding to Clomid means you won't respond to a low dose of injectables. Would be more of a waste of time to be on too high a dose of stims and have to have a cycle cancelled because you've over responded and it'd be dangerous to proceed in case you got pregnant with quads. I'm not a Dr but it sounds like a terrific protocol - I'm sure your doctor knows way more than the nurse running her mouth off. Big hugs, it's rotten of her to have upset you like this xxx

Rosebud yippee excited for you! And what a bargain - my meds delivery last week was £1600 for 4 pens of Gonal-F and one ovitrelle trigger. Gonal-F is waaay more expensive than Menopur though, so it's partly the stims protocol and not just the sledgehammer dose. Result for you, nice work!!

Def worth checking on the lining question - also, def worth checking on the monitoring question, as if they're not recommending an antagonist to stop you ovulating too soon, would want to understand how they intend to time collection properly if you surge before you trigger?

I was told I needed a resting cycle between a fresh and FET cycle, but I was on high stims and a mild cycle might be different. Doing a freeze all does make it quite a bit more expensive though if you're self fund, esp if you're going abroad. There's the additional cost of freezing, the additional monitoring for the lining scans and the travel and accommodation costs - although FET meds are v cheap, even in the UK. So if there's a likelihood of needing a freeze all cycle I'd personally want to understand the cost implications. The women on FF I know of who've done Clomid cycles were all poor responders who were embryo banking over multiple cycles, so they had already planned several trips back and forth. There's lots of evidence frozen cycles can even be more effective than fresh, so it's a good option - just wouldn't want any surprises about additional costs.

AFM and my nuclear chicken ovaries (love it stealth!) thanks for letting me rant. I know it sounds terribly ungrateful to be moaning about ovulating, as someone who didn't ovulate at all, this is I realise a case of be careful what you wish for....!

Nope, I didn’t know it was possible to ovulate without having had a period either, whilst taking drugs to switch off your ovulation, but apparently it is and I have!

Consultant said it was possible but unlikely - but apparently I specialise in the unlikely!!

He said the down reg drugs do create an initial flare up effect before the down regulating effect kicks in. But it seems that my ovaries were still in ‘go’ mode from the previous stims and so the ‘flare’ overrode the suppression.

Basically my ovaries got over excited after being stimmed and thought they were on a roll, and wouldn’t calm down….! i.e. the opposite of what we expected from my ‘sleepy’ ovaries.

The one time we needed my body NOT to ovulate.....?!! ARGH.

Thanks pear I really appreciate the support. DH is very sensible and level headed about it - that although it’s annoying, my body clearly needs a bit more time to recover from the effects of the last cycle. Going on the pill is counter intuitively a very common part of IVF treatment - it helps to ‘quiet’ the ovaries, so you can switch them off before rebooting them with the IVF stimulation injections. It’s just that we didn’t expect I’d need it. It’s a really weird thought that taking the contraceptive pill is an important part of fertility treatment, but there you go….!

Ah banana it's just utter BULLSHIT. Am so annoyed on your behalf. Treacherous ovaries!

Thanks bananna that information has made my day and I am going to my appointment with new determination.

Update from my appointment this afternoon got my menopur injections had scan and injecting lesson. It all sounds v involved going to be in and out the hospital like a a yoyo. DHs swimmers were OK but not amazing, they don't move that well and there is load of anti sperm antibody?!? Anyone heard of this? Still said we were eligible for iui so it can't be that awful but there are always new hurdles.

Good luck freddie that all sounds really promising! The thought of injecting is way worse than the actual doing of it, I’m sure you’ll be rocking it in no time. When do you start stimming? And yes it is a lot of monitoring - the time commitment for any stimulated cycle is pretty similar, whether it’s timed intercourse, IUI or IVF cycle, once you start injectables it’s pretty hardcore! But hopefully completely worth it

Re: Antisperm antibodies I seem to remember that if levels are too high, then it can make the sperm all clump together, in which case TTC naturally / IUI aren’t likely to be successful, and IVF with ICSI would be the best option. I might be is-remembering though, so don’t know if this is entirely right. If they’re saying you’re good to go with IUI then doesn’t sound like they’re too worried about anything, and you should be good to go!

Amazing that you’ve got these cycles funded and really really hope you get your BFP very soon xxx

Ahh banana that makes total sense! In a way it's good that there is a solution to helping make the ovaries sleep! I guess that's what the pill is all about but I never thought of it like that! Perhaps I would have never taken the pill many moons a go if someone told me that always been desperate to have kids! Your DH sounds like a much needed cucumber and rock! Does his day job keep him distracted?

Rosebud - woop woop for the low bill! Now that I understand a bit more about the cost of treatments I can appreciate your celebration

AFM - Well, what a week. I seriously was never expecting my first fertility appt this week. I wonder if my GP chased the hospital on Monday morning?! I doubt it but I would like to think so! I had my first appointment with a fertility nurse this morning at the hospital. I was a mess when I arrived. Just a bag of nerves. Not helped by the fact I had to wait 45 minutes but when I finally got in all was OK. I had this fear that she would laugh at me because I've got my 2.5 year old son and I've only been trying for 1.5 years for Dc2. Straight away her first words were "second infertility" is more common then you think. So, she says (the specialist fertility nurse is her job title) I don't have PCOS because it would have shown up on the scan. I'm a bit baffled as I'm sure I've read on several occasions that it doesn't have to show up on the scan to be diagnosed with PCOS. However, if that's what she says then who am I to argue? She has arranged to take my cd1-4 bloods in January. A bit tricky as it will probably be over the Christmas period but hey ho, it is what it is. She's particularly interested to see my prolactin levels. Hallelujah, someone is finally going to check what I've been asking for over a year now!! Then she looked at DH's results and confirmed that his sperm count is good but the quality is not. She recommended all the vitamins he's already on thanks a lot ladies for giving me a head start with that and she said he needs to keep the laptop and his mobile away from his bits. Most importantly she thinks drinking 2 litres of water a day will make a dramatic difference. He's going to be tested again in February so he has 90 days to put it all in practice. Our next appointment with the gynae is in February too so we will discuss the next steps. She says that iui is our next step if we see no improvement with DH and that will cost somewhere between 2-3 thousand. It's good that I have all this knowledge now. I feel a sense of relief for getting some sort of answer and I now have a plan DH was a bit taken back by my news at first. Especially when I told him that he has to drink 2litres of water a day to improve his swimmers! However, I feel making such minor changes to our lifestyle is positive and he should stop being so lazy

Freddie - I was told today that my DH has the antibody thing but it's not on the seriously high side so IUI would be our next step.

I don't know anything about IUI so you can guess what I'll be researching next!

Banana Another very good point- you are a I have emailed and asked about the lack of cetrotide on my prescription too. Thank you so much. Keep the observation coming.....I feel so out of my depth at the mo! lol She got back to me about the lining. She wants to see how I respond and decide from there whether to do a fresh cycle or freeze. I'm happy to be flexible and see what is best at the time. She says I wont need a resting cycle between EC and transfer if I do them in separate visits so that's good to know!

How long have you got to take the pill for? Do you start taking it straight away or wait for AF first?

Freddie Menopur buddies!! Although I'm unlikely to start mine until January, When are likely to start? What dose will you be taking? I'll be on 75iu.

Pear So glad your appointment went well! Can I ask why she has said IUi is your next step? Have you tried clomid? Or it that not an option because of DHs sperm quality? Pleased things are moving along for you- a plan makes ALL the difference doesn't it?!

CD22 for me. Defo no ov this cycle and no sign of it on it's way- my chart looks crappy. So I'm going to start provera tomorrow or Friday and move onto the next cycle. Need to get a HyCoSy booked in then TTC naturally next cycle before IVF starts in January! Love a plan, me!

Rosebud - I guess at this moment in time she's ruled treating me for PCOS because of my scan results and is focused on DH's poor quality sperm so I think she's just trying to give me some hope saying that IUI could be the next step and that it's more affordable then IVF. She's testing my bloods for thyroid problems which in term has similar symptoms to PCOS so it could be that or maybe it's my prolactin levels. I haven't had enough tests thank you Mr GP for not doing enough and loosing my recent blood results for a clear diagnosis yet. I guess I now don't really belong on this thread now that PCOS has been ruled out. I'm still suspicious though

Oh I see! Banana doesn't have PCOS either but we can't get rid of her so I wouldn't worry about that minor technicality! Lol x

Hi ladies,

Thanks for the advice re the low GI diet, i'll do some research and crack on with it in the new year. Christmas is all about the

Well, one of the perks of my freelance job is that I get to meet people I wouldn't ordinarily have the chance to meet. On Monday I got to meet a Professor who is a top fertility specialist. I grabbed a few minutes of his time and told him about my PCOS. In the couple of minutes I had with him he told me temping is not accurate when suffering with PCOS, he said the most accurate way to confirm ov (beside blood tests) is the clear blue advanced fertility monitor (which I have, but only used it in Oct and it confirmed ov - forgot to recalibrate it in Nov so couldn't use it, but the cheaper clear blue tests did not pick up on ov) He said I can trust the clear blue fertility monitor. He also said "Why not take the stress out of wondering if you'll ov and just try clomid?" So I am considering it now. He also said "When you eat a cake, your body thinks it has eaten 4 cakes" fuck my life

Anyway, I was thinking of using the monitor in December but also requesting a day 21 blood test from my GP to confirm ov and back up whatever the fertility monitor says. I had a blood test back in May that confirmed ov, so do you think they'll test me in Dec if I ask? That is what i'm basing my decision to start clomid on. If I ov then i'll leave the clomid for now, if I don't ov then i'll start clomid asap as that will be 2 months in a row with no ov.

pear sounds like the appt was really useful - glad it came through much quicker than expected!

You are 100% right that you don’t technically have to have polycystic ovaries on a scan to be officially diagnosed with PCOS - although the reverse is more common (loads of women have PCO but don’t have the syndrome, it’s possible but less common to have the syndrome but not PCO). As I think Rose has mentioned before, you have to have 2/3 of the criteria. If your periods are irregular or absent, and you have elevated testosterone in your blood and / or outward signs of male hormone imbalance (acne, facial hair), then you technically fulfil the criteria. Other signs of PCOS that aren’t in the official diagnostic criteria are elevated levels of LH (i.e. the ratio of FSH:LH is out of whack) and insulin resistance.

Sounds like they’re being really thorough which is terrific!

(And Rose is right that I'm not PCOS any more....I was diagnosed with very severe PCOS when I was 28, but turns out I have a weirdo 'burning out' PCOS which means I'm not PCOS any more, as my body 'burned through' my egg reserves, leaving me with very diminished egg reserves. So I had all the diagnostic tests done - it's just that 5 years on from my diagnosis, I don't have it any more)

What have they recommended from an ovulation POV - can you try Clomid while DH works on his swimmers so you can work out what dose you respond to? I’m afraid I can’t remember how regular you said your ovulation was - am assuming it would be a stimulated IUI with a trigger shot to enable the IUI to be scheduled?

I don’t know a whole lot about IUI except for what my consultant said when I asked him about converting our IVF cycle to IUI if I responded very poorly. He said with decent swimmers, there wasn’t much difference in success rates between IUI and timed intercourse, so he recommended we didn’t waste our money on IUI. AFAIK it’s good for mild-moderate male factor issues or if using frozen or donor sperm.

Hopefully with your plan of action DH will have super sperm in no time!!

You are absolutely right, my DH is cool as a cucumber, which is much needed when I’m an emotional rollercoaster and flapping around like a headless chicken (a nuclear one, laying eggs when I’m not supposed to, apparently!!).

Rose it’s really overwhelming how much there is to get your head around, you sound like a pro to me (says the amateur)

Great news that you won’t need a resting cycle - mine was only really because of being on such high stims, I know women on the mild / natural IVF cycle threads go back to back, as it’s much less stress on the body. Playing the lining q by ear seems eminently sensible - tbh there’s so many unexpected curveballs in this game that you can’t really prepare too much for anything, so being flexible from the outset will most def stand you in good stead.

I started taking the pill yesterday, didn’t have to wait for AF as not sure there will be an AF - didn’t have a bleed after the first ovulation whilst I was down regging, so don’t expect to have one after the second. Although I haven’t really had a proper period at all full stop - when I was on the pill before TTC I had proper periods but (obvs) didn’t ovulate. Now I ovulate but don’t have proper periods. I give up!!

Village that all sounds really promising - great opportunity to quiz an expert! Your job sounds fascinating. I have the Clearblue Fertility Monitor, really interested in why he said it was more reliable than the other Clearblue sticks, as I thought it measured exactly the same thing as the dual hormone OPKs, it’s just the monitor remembers your cycles, & ‘learns’ from them, to remind you when to test. I obv missed something!!

Good luck with the progesterone blood test, seems reasonable to ask for it to be tested, so keeping fx for you

xx

Ha ha rose! Banana is here to stay.

Pear glad you have a plan. Onwards!

Rose am excited the ball is rolling for you. Fx.

AFM, just waiting for provera-induced AF. Which of course hasn't turned up. And I NEED to have it because I know there's c 5mm of lining in there that needs to come out. Why does my body refuse to respond to ANY type of drug? How long do you guys take to get AF when you take provera?

Hi everyone, sorry I've been away, I've been baby bombed weekly for the last month - we've taken to calling it the baby blitzkreig. Inappropriate humour is how we roll But I have been reading the thread every day.

Stealth has provera worked for you before? It has never worked for me, and I know other women who are the same. Norethisterone seems to have a better success rate. Either way, I've heard of women starting AF up to 14 days after taking the last tablet.

Banana I'm so sorry your body is up to new tricks. How are you feeling about it now?

Peardrop I LOVE that your GP gives your DH instructions. I might get him to read this thread.

AFM, last month after my disastrous CD21 test (first round of 50mg clomid gave me a progesterone level of 1), CD28 gave me a level of 0.5 . The NHS clinic insisted I did another 50mg clomid cycle with no extra monitoring other than blood tests, so I had my CD21 test yesterday, results on Wednesday. Presuming my progesterone levels are still non existent, I'll try having another go at them to get them to check my lining again. I haven't had any kind of bleed for 14 months (since pill withdrawal bleed) and I'm freaking out worrying about cancer and osteoporosis.

Urgh I was feeling so much better about my situation until yet another friend has announced her pregnancy tonight with dc2. She had an early miscarriage a few months a go but still... I'm soooooo She gets the perfect 3 year gap. Why not me I've decided not to tell DH as its not going to help his confidence

Confused by what baby bomb means? Lots of baby announcements?

Omg, sorry just realised how terribly selfish that rant will sound to those of you struggling with achieving DC1. So so sorry! I've had a glass of wine if that's any excuse The bloody annoying thing is once you climb the hurdle of getting pregnant with 1 child your desire and lack of patience to have another is just as bad the second time round. I was really hoping that my desperation would fade second time round but it really isn't any different. The pain, disappointment and anger is all the same IMO. Ridiculous.

Oh and someone asked me why are they not putting me on clomid. Well, the lady said that finding out I didn't ovulate twice doesn't give her enough reason. Basically she just wants to be triple sure before handing out the drugs

Banana how's it going with the pill? Any unwanted side effects so far? How are you feeling?

Stealth Any sign of Provera induced AF yet? I'm on my 3rd day of tablets so will expect AF in a week so I'm not far behind you! So far each time I've taken Provera AF arrives on the 5th day after the last day of tablets (I only take 5 days worth) so 10 days from first day on tablets. I'm hoping this cycle will be the same as usual.

Oranges Hello! Wishing you lots of luck with your progesterone levels Fingers tightly crossed it shows ov. Are you temping? That would give you a good indication of ov before any blood tests. May be worth a try next cycle?!

Pear don't be silly! Of course you are going to feel just as frustrated and angry and jealous at everything around you when you are ttc and nothing positive feels like it's happening. Its only natural, whether its your first child, second or third. This is the perfect place to vent cos we all get it. Baby bombing is the f**king worst. .... each time someone does it to me I delete them from fb. It makes me feel much better! I don't need to see the constant reference to "little bean" or "peanut" and certainly won't be putting that sort of crap on there if/when I'm ever preg .....cos I feel its majorly insensitive. Hope you're OK x

Hi all - hope you're having good weekends!

pear of course you don't have to apologise - we all get it. It's so hard when you see everyone around you just falling pregnant let's not even start on my friend who was scornfully telling me a story of another friend "who's taking her temperature to try to have a baby - how ridiculous, WE just had sex for a couple of months and it worked". If only she knew!

Rose oooh you're just behind me. How does it work with the protocol then? You have a period and then start your down regging? I'm a bit clueless about IVF still!

AFM, AF turned up yesterday! Unclear whether it was the provera or just natural as I got to cd43 which is about when I'd "normally" whatever tf that means have a period anyway. But it is a real period, so I am starting Clomid tonight. Am mentally thinking about it as a test cycle to see if I respond rather than a real baby-making cycle, so I feel ok about it. Am going to get my scans but also have fun over Christmas, have lots of fabulous restaurant reservations and functions lined up over Christmas and definitely intend to have a few lot of drinks so we'll see. If I respond, great, I'll have another proper go (probably with IUI) in January. If not, the New Year will be all about deciding between ovarian drilling or IVF.

Ps hi oranges - welcome back! I've never taken provera before as I do have periods (other than last cycle), they just take ages to come. As I had a failed Clomid cycle last time they said to take it to induce a period - I'm just not sure it did!

I can't believe you're not having scans on clomid, it's ridiculous. Give them a kick up the bum!