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

Stealth - My husbands results was 2%. I think morphology refers to the stickiness or the liquid that helps the sperm swim. Not 100% sure I'm right but I know the doctor told us that he wants to be 3% up. However, since we've already had 1 child he doesn't think it's something that will stop us having another...just will take longer. I've got DH on 4 different vitamins now and healthier eating habits. Unfortunately he's not into exercising yet but I'm hoping that will come. It's not the easiest time of year to be making these changes

Rosebud - how horrible for you to be on that ride. I hate this roller coaster. It really really sucks having so much confusion and waiting time to deal with. Well done for dtd and carrying on. It can't be easy for you both with all the information swirling around your heads

AFM - I had my ovary scan today. At first she freaked me out by telling me my lining was too thin but that's because she misheard me saying that I was at the end of AF She couldn't find anything wrong and said that my ovaries don't resemble PCOS but obviously my doctor has to look at blood tests to give me a final diagnosis etc. She said that I should be referred to the fertility clinic. So, obviously I am extremely grateful not to have bad news but on the other hand I've got nowhere else to explore as the doctor has already warned me that the NHS waiting list is insane and I would be looking at next Summer. All we know from the last 4 cycles is that I have ovulated 1 out of 3 times according to my bloods. I suspect I ovulated last month because of temping but I won't obviously know for sure...like rosebud. Clearly temping isn't a bulletproof answer. I feel that as DH and I have only recently started our healthy life changes I should probably give it a few months before going down the private road. It's hard though when you don't know how long a few months will be. I feel a bit like my hands are tied and I've just got to drop it all. I don't know whether to go back to taking Agnus Cactus and try Magnesium as I read that article about Magnesium helping people with PCOS insulin resistance. Perhaps I should read up on the side effects of taking too much Magnesium! I was convinced I would see cysts on the scan today. It's weird to feel so out of control. I have an appointment with the dr next week to discuss it all and review blood tests but I think I know where this is all going.

Pear - the not knowing is the worst. If someone just said "you will have a baby but you will have to jump through X hoops to do it and it will take Y years" then I feel like I would be fine with that. Fx for you!

Morphology has to do with the shape of the superb - so 2% morphology means 98% is defective. In my DHs case he has a lot of sperm so in theory still has c 6m normal swimmers but it's unclear to me whether they will always "win the race" or whether there are other side effects. Hopefully we'll get a steer tomorrow. I just can't believe he forgot to tell me that!

stealth good luck at ARGC today, and with my lovely gynae tomorrow (say hi from me!). Really hope both appointments are productive and you get a clear plan in place for moving forwards.

rose oh lovely, that sounds sooo blimmin frustrating. What is it with our stupid bodies and not doing what they’re supposed to? I ovulated but got neither a +ve OPK or a temp rise (and no way I could have conceived as my lining was too thin) and you get the reverse. Can something not just sodding work for us FOR ONCE. I feel ya, and really hoping you get some answers soon - and that you can prove the Dr wrong with a BFP this month xxx

I’m doing OK so far - still no sodding AF. Emailed the consultant’s secretary in a panic in case not having a period means the baseline scan has to be cancelled. She said buserelin can really disrupt periods, so not to worry, and still to come next Tuesday even if I haven’t had a bleed. Terrified I won’t be sufficiently down regulated to be able to start stimming and the cycle will have to be postponed till the new year, in case we have to keep down regging me and there’s not enough time before the clinic shuts for Xmas. As you all know, every single stage is a massive hurdle, my nerves are shot to shit.

Will I down reg enough to get the go ahead to start stimming. Will I respond to the stims. How many follicles will I get? Will my lining thicken up enough to be able to consider a fresh transfer? How many eggs will I get at collection. Of those eggs, how many will be mature enough for ICSI? How many of the eggs in the freezer will survive the thaw? How many of these eggs will fertilise? Of these, how many will survive till day 2/3? Will there be enough decent quality embryos to try to culture to blastocyst, or do we have to go for a day 2/3 transfer? If so, how many? If we are allowed to try to go to blast, how many embryos will arrest and will there be anything left by day 5? What quality will the survivng blast(s) be (if any)? Will my lining be OK to proceed to transfer? If so, depending on the quality, how many to transfer (1 if it's good quality, but if there's more than one and they're poor quality, do we go for 2?) Is there anything left over that's of sufficiently decent quality for the freezer?

Then, ultimately, the big one. Will I make it through the two week wait till OTD (official test date) without AF coming? If I make it to OTD, will I get a BFP?

Then obv it’s into the world of betas, whether they’re doubling, if you can make it through the SECOND 2ww without a chemical, until the 6 week scan when if there’s a heartbeat, the BFP becomes a clinical pregnancy. And so on. And so on.

I’m just focusing on the ‘will I make it through down regulation’ bit, and trying to get through the next week, before worrying about the next bits. Though obviously I’m still crapping myself.

Emotional rollercoaster is pretty much bang on!!

Hi ladies, I haven't updated on here for a while - mainly because I have very little to update you on! I am on day 7 of this clomid cycle and wondering whether it will finally work. I have an appointment with my consultant next week and want to have a chat about where to go from here seeing as I don't seem to be responding this time.

rose sounds like you've had a nightmare few days. Glad to hear the fluid is nothing to worry about though and you can carry on DTD.

stealth lots of luck for your appointments this week. Keep us posted. I wish I had something useful to add about morphology but as usual you and everyone else know far more than me

bananafish glad you are doing ok. There are lots of hurdles and lots to think about but one step at a time. xxx

Thinking of you all! Positive vibes all round!

Eighty - ooh good luck on clomid! How much are you on? When's your first scan? Must be soon - good luck!

Oh banana - the hurdles are awful. You will get there!

AFM, appointment 1 of 2 down. Really liked ARGC, they were super pragmatic and set out all the treatment pathways. Annoyingly our Christmas trip will interfere with all the monitoring so we may have to wait til new year to move on if we go with them. They've given us the choice of 1 more clomid round at 100mg and then to ivf/icsi or straight to ivf. (They also gave us the choice of following clomid the whole way through ie a 6-8 month treatment pathway, but we both rejected it - seems pointless.) Dr seemed to think that IVF would be reasonably straight forward for us, he said it would have around a 80% success rate and he said with "grossly polycystic ovaries" the chance of clomid non-response was around 40% so it was really up to us as to how much of a hurry we were in.

He also did a second SA for DH and they analysed it on the spot (which was great) - his morphology came back better but still borderline at 12%. Doctor's recommendation was to do clomid + IUI and if we then move to IVF they can take a call on icsi depending on what they see on the day.

So we've left it that we'll do a monitoring cycle, then 1 cycle of clomid/IUI and then IVF - although as my next cycle probs won't work timing wise we might even go to IVF and avoid another 50 day delay...we need to discuss. Am looking forward to comparing and contrasting the appointment tomorrow!

stealth glad you had a good experience at ARGC how was the other place?

rose you poor lamb but fingers crossed for you.

I got a BFN this morning..... Strangely I don't feel too upset I think I have such low expectations now and I my head had already written off Clomid (I expect I will have a delayed reaction and fall apart at the weekend when i have time to stop and think). So it's onto the injections but there are lots of hoops to jump through first. More seminal analysis for DH counselling forms etc. I actually just feel so bored of it all. But then watching catastrophe last night (so funny if you haven't seen it) DH said I do really want another baby. Which made me really happy as I sometimes feel he wouldn't bother going through all this if it wasn't for my nagging and whinging!

Pear It's so difficult isn't it because in a way you are pleased that you don't have cysts (believe me cysts are the worst.....ever!) But then not having cysts means that you don't have any definite answers which is even more frustrating. I'm hoping you get some answers soon When are you due to hear from the doctor?

Banana If only our bodies would do what they were supposedly designed to do! It isn't much to ask, is it??! It's infuriating! Fingers crossed AF arrives for you soon and doesn't put your IVF plans at risk by arriving too late. There are so many unknowns along this whole journey and none more so than with IVF. I really do feel for you and know that I will be feeling exactly the same when it's us. All you can do it take control of the things that are controllable, and try to not over-analyse the things that aren't (although I know I'm crap at this at the best of times!) I am really excited for your stimming stage though= I have a good feeling.

Eighty Let us know how the clomid appointment goes next week- keep my fingers crossed for you! Any bad side effects so far? x

Stealth All sounds very positive at ARGC. How did your other appointment go today? If you do decide to go ahead with the IUI, I'll be interested to hear how you get on as we haven't had anyone on this thread try that yet, and now that my DH's sperm is looking better it is a potential option for us.

Freddie Sorry to hear that the clomid didn't work again for you. Is the plan to do the infections and have IUI, or just the injections with DTD naturally? When do you think you are likely to start this? Next cycle?

AFM- 7DPO apparently according to FF. I think it's lying to me and I haven't ov'ed. Will test at 14DPO and if nothing I'm going to write this cycle off and take Provera to bring on a bleed, then get that bloody HyCoSy booked in
In other news the doctor now has all my results at Reprofit and is now deciding on my protocol- exciting!

Rosebud - that's so sweet of you to say but honestly after finding this thread and reading what you ladies are going through I can honestly say hand on heart that there wasn't a moment of disappointment when the scanner said my ovaries looked fine but yes it's still uber frustrating that I'm back in the dark. Nothing compared to what you're all going through though at all. My appointment with the doctor is on Monday. There is still part of me that wonders whether I have insulin resistance PCOS just going on the fact that I seem to ovulate the months that I am healthy. I don't believe that it is just a coincidence. I'm going to ask him to give me a fasting test just to check my insulin levels. I know he's going to give me a "look" as if to say lady give it a rest!

Hi ladies

I hope you don't mind me joining your super friendly & informative thread!

I have been ttc #1 since sept 2015. I had a recent blood test which revealed the results to be consistent with PCOS (Dr said something about a 1:3 ratio, mine were 11:3). I don't really have any other symptoms save for acne (even then it's not severe). The doctor wasn't really that helpful in terms of what it actually means for me. She said lots of people have it, some struggle to conceive, equally ladies This is aoife! Xxx it struggle to conceive. In any event she wouldn't refer me until Sept 2016.
She has referred me for a scan & a diabetes test.
I would welcome any thoughts you have and any advice to improve my prospects? I am slightly overwhelmed, as it happens I am CD 34 & thought it might be a BFP, but just tested & it's a BFN!

I was clearly typing in a hurry 11:33 were the results she mentioned! No idea how This is aoife! Xxx ended up in there!

Welcome woodie hope you find the thead useful. There are a few things that you can do for yourself while you wait for a referral I know some ladies have tried Angus cactus and soy suppliments might be worth a go? Are you temping or anything like that?

rose yes going to do injections with IUI. I think although got to have the tests to check DHs sperm again although it was ok last time so should be alright. Only problem is forcing him to take the time off work.... He's very backward in coming forward with work and is too worried to ask.... Esp as it won't be with much notice it will be like yes the folics are big enough so get him in here to give his sample right now! I am Slightly unsympathetic and think he should just tell them. Sure they would understand. Going to start next week as soon as Af arrives. Have to have a scan while she is here which doesn't sound pleasant.

Hi ladies - other place was good but (unsurprisingly) different treatment pathway recon mended! They are saying clomid, then clomid/IUI, then ovarian drilling (eeeek!) and only then IVF. Dr was much more down on DHs sperm quality (ha) and recommended Vit C and zinc (I ALREADY TOLD HIM THAT). He's given me a script for provera and 100mg clomid so I'll start on that tonight and cross my fingers the timing works before I leave london on hols (God knows what I do if I take clomid then have to leave - get some scans organised in my home city, I guess?!)

It was really good to hear the contrast - it brought home to me that this is an area where you really do need to do your own research and decide what's right for you, rather than being dictated to by doctors. DH was completely bemused and it was really great for him to be there, we are having much better quality conversations now. I know it's not an option cost wise for everyone, but if you can get a couple of opinions I would really recommend it. Even their metformin recommendations wet different - both recommended going up to 1500mg, but one said take 500mg 3x per day and the other said 850mg 2x per day. !!

So I'll start this second clomid round and then consider options based on th responsiveness there. I'm not sure how I feel re ovarian drilling (or diathermy as the Dr calls it) - will need to do some mor research. And, ofc, it depends on DHs sperm quality - we'll need to keep testing there. At the moment I am leaning towards IVF sooner rather than later - all this scanning and monitoring on clomid is incredibly time consuming and it sounds like our IVF odds are really good. And given DHs morphology I like the idea of the genetic screening pre implantation. But we'll see. Will see how clomid goes first.

Am off to have my final, pointless scan from this clomid cycle tonight - what an epic week. Am guessing I'll be told any follies have withered on the vine so will start provera once I have that confirmation. Onwards!

Sorry that last post was very me me me!

Freddie - good that things are moving. Could dh just take a sick day if he doesn't feel comfortable fessingn up?

Woody - welcome! As Freddie said supplements are helpful, and if you can get your gp to prescribe it metformin is a good idea.

Thanks Freddie & stealthbannana. My doctor wasn't really that helpful. She printed off a leaflet and said here you go. I asked for the scan and she eventually suggested tests for thyroid & diabetes. She said I could be given a drug called clomid but I would need a referral for that, she also said she would prefer to wait until I have been trying for a year! Which alarmed me. I am 30 so I have time but if it isn't going to happen I would rather do something about it sooner.

Thanks for the tips re the supplements, do you recommend any particular brand?

I have also been having acupuncture treatments, having one tomorrow so will see what she says too! To top it off DH is on the other side of the world so can't really talk to him atm x

stealth that's really interesting. You are right in that more than in other areas of medicine you can make choices about the approach you take. That's really good that you have a couple of options.

woody sorry they weren't helpful. I haven't used soy but the Angus cactus I had was from planet organic and it was GROSS! I have been having actupuncture too it's super relaxing but I am unsure if it actually does anything.

I would just call in sick if I needed too but he's v v v reluctant. Sure it will be ok in the end!

She sounds a bit hopeless woody. I would at least push for some progesterone blood tests to see if you're ovulating. It's such a battle!

Freddie - yes, lots of options and it's all so individual. Eg I have just been doing some manic googling about success rates for ovarian diathermy for people (like me) who have no signs of insulin resistance and have a 1:1 fsh:LH ratio (both metrics are normal for me). Can't find anything, will have to go and ask the question. Will I want to do it? I don't know...

It's a minefield! There are no right answers, only probabilities and statistics to go on

Right, to add to the all about me show, I just went and had my final scan of this Clomid cycle - as predicted, no follie growth and my uterine lining is starting to fall apart - down to 5.1mm and she (and I!) could see some contractions happening. So the only question was really whether to wait for a natural period (apparently contractions can sometime indicate it's coming) or take provera. Needless to say I took my first provera pill tonight. Fuck Mother Nature!

Hello everyone in 26 years old and after many blood tests etc by my gp I have been diagnosed with pcos, have been referred to gynae is sept but the waiting list is 11 months so won't be seen for ages yet, have been actively ttc from February but only had one period in that time. Worried I won't ever conceive!! Have been slowly losing some weight - it's a very slow process!!

Welcome Nurse

Stealth Glad you are cracking on with the Provera.

Final test done today and its a defo no. So got an appointment on Wednesday to sign HFEA forms and more analysis for DH then hopefully can start on injections. Onwards and upwards... again

Bloods taken today to ascertain if I have PCOS. Doc seemed to think it was the only explanation for the long cycles I've been having and said the Pill would have been masking it. Feeling a bit emotional so could do with cheering up / some reassurance.

Aw Sophie! It's is a bit emotional. I only found out Thursday. although disappointing I feel a little relieved that there is an explanation for the long cycles & spots! There is a lot of advice online but maybe wait until your results! try not be too upset there are lots of success stories too xxx

If it does turn out to be PCOS, will they still help you if you're overweight? It sounds daft, but it's making me worry... and feel more insecure than I do already.

I can't say I am expert, but I don't see why not, as it is a symptom of PCOS. Once you have a firm diagnosis I am sure they with offer advice re weight loss & other symptoms. Try not to stress too much xxx

I've found a low carb diet (not everyday for me!) to be very effective for weight loss for me. I basically eat as little carbs as humanly possibly about 2 days a week and have now lost 5kg in 5 weeks - eating healthy the other days but not excessively low carb. It's actually not too bad!

Pear Good luck for Monday! Let us know how you get on.

Woody Welcome! Sorry about your diagnosis. My doctor referred me to the fertility clinic after 6 months TTC because I already had a PCOS diagnosis- I would try and get the same if you need to. One thing I've learnt on this looooooong and challenging 'journey' is that you have to push for what you are entitled to. Don't be fobbed off! Hopefully you wont need the referral but it's good to have in mind just in case How old are you?

Freddie OHHHHHH! This is exciting stuff! I am really interested to hear how you find IUI- I'm wishing you lots of luck

Stealth Interesting about the two rather different consultations- just goes to show how different, different clinics think! So difficult to know which is best but as you say, you just have to do your own research and go with your gut feeling. Also my consultant wouldn't even consider ovarian drilling as an option.... and to be honest I haven't read much in the way of positive stories on that front.... but who knows!

Welcome Nurse How old are you? I'm just adding you to our stats! 11 months to see a NHS gynae???? Really??? That's mad! Whereabouts are you? x

Sophie Hi! Try not to worry. Whats your current BMI?

AFM- FF took my crosshairs away and now doesn't think I ov'ed which just confirms my suspicions! Here's my chart: www.fertilityfriend.com/home/5790c0

The plan is to wait a few more days and then take provera to end this cycle and move into the next one- I want to get a HyCoSy booked in for the beginning of next cycle so the provera will enable me to control when AF comes, which is good.

Reprofit are in the process of arranging my ivf protocol- a combination of clomid tablets and menopur injections. I'm a bit nervous about taking clomid again after my last experience of it but they know my history so I'm willing to put my trust in them. Just waiting for confirmation of the doses and a date!!!