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

Eeek banana Everything crossed here for your scan!

Ponty on the POAS crazies front, I actually lost the plot 2 months ago. After I'd had the trigger shot on my Clomid cycle I used an Internet cheapy to have a 'practice run' so I could use the hCG in the trigger to see what a BFP would look like!! Madness!

You never know Ponty, that once might have been it! FX I'm the opposite with taking tests, I've obv taken a few in the past so I tend to just wait it out as much as I can now. Did a pg test this cycle then started bleeding the same day so I felt silly after.

Thanks Chandelier for the advice. According to FF ov was cd34 last time so although I'm hoping it's a little earlier, I have a rough idea of when to test. Think I'll just get lots of cheap ones like you say so I won't feel too bad about testing lots to make sure I don't miss it

Nature is a joke sometimes! Best of luck for your scan tomorrow Banana

chandelier my order of HPTs from amazon are arriving tomorrow I'm terrible!

banana the bloating sounds shit BUT this is all v v exciting now!!

Bananafish so exciting about your scan- good luck and do let us know how you get on. Sorry to hear about the bloating but hopefully it means the drugs are doing good things.

ponty woohoo for ovulation! Maybe once was enough - Fx!

I highly doubt it will come to anything, it was actually spontaneous middle-of-the-night sex, which feels like a rarity when I spend 40+ days each cycle obsessing over DTD!

My boobs have been killing me since a frw days before I ovulated, I'm hoping this means my progesterone levels are good as I've been randomly worrying about it lately. It probably has nothing to do with it!

Consultant is v pleased, four 11mm follies, couple of very small ones but realistically looking at hopefully 3-4 eggs. My FSH results suggested I wouldn't respond at all so he's v happy to see something going on there - and esp because they're all evenly sized, so nothing's gone racing off gobbling up all the stims (yet). As I've responded better than expected he's reduced my dose to 300iu, and started the Cetrotide today. Bloating seems just to be the shock to the system of the drugs to my pre menopausal ovaries, and no cause for concern. Obv I would have loved to have seen tonnes of follies but as I didn't have them in the starting block to begin with, I was never going to get many (unlike my formerly very polycystic ovaries where the worry would have been hyperstimulation!) So. We shall see what happens at the next scan...

banana it sounds like it went really well! Fx for the next scan, which I'm sure will be just as positive.

Evening all!

Sorry for the silence- DH took me away for the weekend on a luxury spa break with all meals, treatments and classes included! Plus the spa had a complete ban on the use of mobile phones- it was utter bliss! I feel very lucky and spoilt .... and relaxed! He is such a goodun.

MrsC My experience of opks is loooooooong and uneventful! I've never had a positive, even in the month when ov was confirmed via blood test! I still do them daily but I'm not sure I'll bother buying anymore after this pack of 50 has gone- they just don't seem to work for me! Interestingly I was accepted by CB to trial their digital opks despite telling them I had severe pcos, but then had to pull out because I started clomid and they said I couldn't trial them whilst having a medicated cycle!

Ponty BIG WOOP! for ov!!! I also worry about progesterone levels, particularly as my chart last cycle (when I did actually ov) showed a definite temp shift but not a really high, sustained one. Does anyone use progesterone pessaries at all?

Banana So pleased you see your amazing news about your follicles! This is fab!!! When will your next scan be? How long do they think it will be until your EC? Do you intend to have the embryo transfer this cycle too or are you embryo banking?

AFM, My harassment of the fertility clinic receptionist finally paid off on Friday. I have got an appointment with my consultant for this Thursday (instead of the original Feb date I was given)! I probably wont get my AMH results then as I think it will be too soon but I intend to beg for Femara (alternative to clomid with less side-effects) and get a promise of my AMH results over the phone when I want them!

Sounds promising Banana. What happens next? I'm not as familiar with the process as some of you as I haven't got that far yet. Have FX for you though.

Sounds like you had a lovely break Rose. You do have a goodun I'm willing to give them a try as I've only done so once before, used a pack of 10, didn't get a positive so gave up! That's interesting about the CB ones as I was reading up on them and they say unsuitable for PCOS. Why does everything have to be more difficult for us?!

Ponty and Rose- I've wondered the same thing about progesterone as temp showed I ov'd last cycle but the shifts aren't massive. Also wondered if I ov'd and everything else is ok, why didn't I get pg. As far as I know, ov is the only issue with me getting pg and though I know not even 'normal' couples get pg every cycle, I'm scared that there's some other barrier that I'm not aware of yet. I did research low progesterone and signs seem to be spotting before period, short luteal phase and difficulty getting pg from what I remember. Apart from the latter these don't really apply to me but last bloods I had showed ex low prog, although they did it on day 21 which is the wrong time in my cycle. I had considered buying prog cream online for after ov as ive wondered whether I've got pg but it can't implant or be sustained due to low prog. Does anyone have any thoughts?

That's great about your app too Rose! Persistence does pay off

Wow Rosebud that sounds fantastic - you sooo deserve that weekend, and your DH sounds like a wonderful man So glad you had a fab time!

And also massive high five on getting the appointment with the consultant - it's so true that if you don't ask you don't get! Keeping fx they give you Femara - they prescribe loads of stuff off label for other things so hope they do the same in this case

Check you out with all the IVF lingo! . So, next scan is on Tues; EC either Friday or next Monday - will know on Tuesday whether he wants me to trigger or not. I think unlikely, I suspect Monday but who knows! I'm just desperately hoping I don't have duff eggs and that we make it to transfer at all. The only reason to do a freeze all cycle would be if I had OHSS (which I won't) or if my lining hadn't thickened up sufficiently (possible but also hopefully if it's not on track then he may give me some Progynova to help it along in the mean time). Freezing also depends on having something of sufficiently good quality to freeze in the first place.

No plans at the moment to embryo bank to save them up for chromosomal testing: if we can get anything to transfer then it'll be straight back in this cycle ideally. Desperately hoping to be PUPO in the next few weeks! The absolute ideal outcome would be a day 5 transfer of a good quality blastocyst and even better would be to have something for the freezer, but that would be hoping for a hell of a lot...

I will report, er, back on the progesterone pessaries, er, front. Nurse at the clinic said they could go either front or back - she joked 'why not mix it up, swap em over every other day' haha. Was advised by a friend to stock up on pantliners and get a nail brush!!! (TMI?!)

Ponty nice work on the ov!! Keeping everything crossed for you.

MrsC thanks so much So, basic summary is that:

1. I started FSH injections last week to stimulate my ovaries
2. I had a scan on Sat to check progress, and added in another medication to prevent ovulation
3. I have another tracking scan on Tues to check progress. Depending on the outcome of this, consultant may recommend that we proceed to egg collection on Friday, or may continue stimulating for a couple more days and go with collection next Monday
4. Once collection is agreed, I'll be given instructions about when to trigger - exactly 36h before my collection time
5. Collection day! Sedation, needle up my chuff to remove eggs from follicles, DH goes into the wank booth while I'm in theatre, and we leave our eggs and his sperm to get jiggy overnight.
6. Longest 24h wait until they call to say how many fertilised - and when we're likely to go to transfer (depending on how many embryos we have - if any!!)
7. hopefully embryo(s) get put back 2, 3 or ideally 5 days post collection
8. the two week wait! Or rather 12 / 8 day wait
9. crap myself and try and stay away from Google...

Frankly at this stage I'm still terrified the cycle could get cancelled it the follies don't keep growing, or that it'll turn out I have crap eggs and we'll get 0% fertilisation, or that anything we have will arrest before transfer. If we get to transfer then I can crap myself about embryo quality and then whether anything will take or not. So. One step at a time.

I'm rattling with stuff for egg quality. Because my crappy weirdo 'burning out pcos' has made me transition from having too much testosterone (ie Polycystic ovaries and acne) to now having burned through all my eggs and my ovaries having got used to too much testosterone, my last bloods showed my testosterone was barely detectable - and whereas too much testosterone sends the ovaries Polycystic, too little means follicles don't grow at all. So I've been on DHEA supplementation - supposed to be a wonder drug for women with diminished ovarian reserve, and apparently doubly so for 'burning out pcos' women who are even more badly affected by not enough androgens. So the acne I had when I had 'normal' pcos is now back with a vengeance, my hair is ridiculously greasy, my skin is an oil slick and today I noticed the fair downy hair on my forearms is not so fair and not so downy any more. So basically I am turning into a teenage boy. However if it means the DHEA is doing something for my egg quality, I will happily look like Adrian Mole if that is what it takes!!

Sorry for rambling on. Apart from one friend who is quite a bit older and had her first child through IVF (and now cycling again for a sibling) all my friends have all got knocked up naturally, so it's ladies like you who are keeping me sane. Thanks for letting me vent!! Xxx

MrsC my only thought is that I have the same thoughts as you! I'm wondering if my progesterone is dropping too soon and that is adding another level of difficulty to this crappy journey. The only other thing to think about is that we all have some dud eggs and maybe we just realised one of those and that's why there was no preg... I aware I read somewhere that an average only 1 in 3 eggs released are of decent quality.... or I might be making that up?! Sure I read something like that somewhere cos I remember thinking how crazy it was!

Haha! Loving the TMI Banana The nail brush remark made Lol!!! I've heard similar things! From what I've read its less likely to leak from the back door All very unsexy but necessary! I literally cannot wait for you to be PUPO! It is mega exciting! I really hope you have as much luck as Newby did It would be so wonderful and such a massive boost for the rest of us! Good luck for your scan tomoz! X

Banana do you think its worth me starting Co enz q10 each day as a precaution in the run up to IVF? I've been told things will move v fast once the clinic have my AMH result so want to try to improve my chances with good egg quality if I can! (I know it takes a while to get in your system but no harm in trying now is there?)

Rosebud yep and the nurse said it didn't make any difference in terms of, er, absorbency whether they go in the front or back Either way much more preferable to the Gestone injections - which have to be given IM and require your partner to jab you in the backside and are apparently very much not painless!!

I can't let myself believe I will even get to be PUPO, let alone that I will get a BFP on this first cycle. I really really appreciate your support - you ladies are so bloody awesome!

I'm so so excited for you Rosebud, it's a solid plan and I've only heard amazing things about Reprofit - it really will fly once you've done the paperwork. I couldn't believe how quickly it happened for me, I still can't process that I'm actually having IVF.

I personally would say yes to the CoQ10 as ideally it's 3 months prior to a cycle and I wish I'd started taking it earlier!

Age is the biggest determinant of quality: I think under 35 it's something like around 40% of a woman's eggs are chromosomally normal (ie will develop into competent embryos when fertilised): I can't remember the exact numbers and ages thereafter but I think it's something like 10% by the time you're over 40. So you are really going so everything is in your favour, but I reckoned that with the CoQ10 every little helps

I'd really recommend the book 'It starts with the Egg' by Rebecca Fett: she's a biochemist who waded through loads of the research for various supplements when she was going through IVF, and summarises the key findings in a really readable way. I found it super useful as there's so much out there I liked having one single source of truth to work from (and to then ask my Dr about)

That and the Zita West assisted conception book are both staples on my Kindle for me to refer back to xxx

Wow so much going on! Really hoping to see more BFPs very soon.

Im 6dpo and headed to the hosp tomorrow for my "day 21" (actually day 48 or something, I think) and I fully expect ovulation to be confirmed this time or else! my temperatures are nice and high so that's good. Not holding out hope for anything more than that.

Bananafish, great news about the four follies and that the bloating wasn’t any cause for concern. Has it gone down a little? And thanks for the explanation of the process – I think I am closing to IVF than I originally thought so I am learning avidly from your experience. There’s an interesting thread on AIBU at the moment about people’s IVF experiences - www.mumsnet.com/Talk/am_i_being_unreasonable/2473136-To-ask-for-your-experiences-ve-and-ve-of-IVF
Rosebud, full marks to your DH – what a wonderful treat, and thoroughly deserved. Great news that you have got an appointment for this week already. Hopefully all your results will be back by then.
Ponty, how long will you have to wait for your ‘day 21s’?
I had a depressing day today. I had my HSG which for some naïve reason I thought would probably show that my tubes were clear (despite the fact that the dye didn’t flow through them when my surgeon tacked on a dye test to my ovarian cyst removal a few weeks ago). After quite a few attempts, the result seemed to be no flow – but the radiographer said that as I wasn’t getting the severe pains that women with blocked tubes tend to get when the dye is trying to get through, she wasn’t totally sure what was going on. When the contrast dye went into my vein (which I, watching the screen, thought hopefully might be one of my tubes!), she had to stop the procedure.
The earliest appointment I could get with the consultant to discuss the results is in November, but I will of course be ringing regularly making a nuisance of myself to try to get a cancellation. When I saw him last week, he said if the tube test was clear, I could get straight onto clomifene. And if they were blocked, then I should come and see him and we would get started down the IVF road. I’m probably more in the latter camp than the former, but the test didn’t seem to give a definitive answer. My excitement upthread about going on clomid was probably misplaced though . So now I have a whole new avenue of research. E.g. how do you harvest eggs when tubes are blocked?
I have this really strong recollection of one of the posters on this thread, when I was possibly still just a lurker, having a bad experience in the evening after the HSG while her DH was out with work and uncontactable. I can't seem to find it anywhere but that's probably just as well as DH is away and I'd probably start fancying myself ill rather than just feeling sorry for myself that my silly tubes aren't playing ball.
Sorry for the pity post. Onwards and upwards, and Fx for some BFPs soon from all of us whether via IVF, Femara, clomifene or au naturel...

Oh Feefee I'm so sorry, that must have been such a shock and frustrating not to have a definitive answer one way or the other. Massive hugs lovely. I don't know if it's of any comfort but having blocked tubes is one of the most 'ideal' reasons for IVF ie one of the greatest chances of success. IVF was actually invented specifically for women with blocked tubes - that's why Louise Brown ( the first 'test tube' baby)'s mother had IVF, as it's a means of conceiving that bypasses the tubes completely. You don't need any tubes at all for IVF - they harvest the eggs directly from the ovaries, and pop the embryos directly back in the uterus via a catheter through the cervix. So whilst I'm sure it's a massive shock to have this as a possibility, having blocked tubes absolutely does not mean you won't be able to conceive, it just means you may get your BFP via slightly different means. And as you can see, whereas this group started as soy isoflavones and Clomid, quite a few of us are at the stage of IVF - and we've even had our first IVF BFP from Newby xxx

PS I think it was stealth who had the AWOL DH + HSG incident...?

Thanks Banana my dear - I appreciate the positivity! It is definitely a comfort to know that tubes are a classic reason for IVF (as usual I am quite a way behind you on the learning curve.) I will look up the post you mentioned earlier today too. Ah yes, thanks for the reminder on the HSG - found the posts now. Poor Stealth!

Oh something I meant to mention about coenzyme q10 for banana and Rosebud - apparently ubiquinol (a different version of the same thing) is even better? Not that I am an expert.

Yep it was me with the HSG issue, but it sounds like mine was different - my tubes were so clear that the dye went though them and into my abdomen quickly which caused the vomiting. Bleurgh

Banana you are almost pupo! Can't wait for you. Fx.

I've stepped away from thread for a wee bit as have had a few down days and needed to stop thinking about it all. On cd21 and not feeling any ov signs. Sigh. Going for my "day 21" bloods from cd24-29 so we shall see.

Dh and I signed up for argc today. Given he waiting times there it felt prudent. My gynae has confirmed she won't do clomid as she feels it's better for that + tracking to be done at a fertility clinic - so I figure we might as well get rolling on that as I don't think my body is going to work by itself (even with metformin)

Ps my other news is that I've been diagnosed with suspected Lyme disease. It's a 3 week course of antibiotics - doxycycline. Which of course you absolutely can't take whilst ttc. Am going to wait out this cycle and then take them. Just another roadblock. Ho hum.

Feefee thanks for that! Yes, that’s exactly what I read - I think the standard CoQ10 (ubiquinone) is converted into ubiquinol, so you only need half as much if you’re taking ubiquinol. One step at a time with the IVF journey - your tubes might well be tip top, and you’ll walk out of the appointment with Clomid. If not, then you’ll be an ideal candidate for IVF, but cross that bridge if you get there

stealth oh my dear, you have been in the wars! Hope you’re not feeling too rubbish with the Lyme? Hope the ABs kick it into gear. ARGC have an incredible reputation - a friend cycled with them, described it like boot camp as it’s v intense, but their results speak for themselves. If my bloods weren’t so atrocious, I would def have considered them (they won’t take you unless your FSH is below 10), so getting on the waiting list sounds like a v sensible idea

Ponty wishing you lots of luck with your bloods

AFM, had my second tracking scan earlier. The four follies have grown nicely, plus there are two smaller 11mm ones on the left which the consultant says might catch up into something we can work with by the time of retrieval. He thinks Monday for collection day, and have one more scan before then (prob Friday). He’s dropped my Gonal-F dose down again, as he doesn’t want to overcook them. Lining is also on track (7mm) so he’s v pleased. Come on little ‘uns!!