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Conception

When's the best time to get pregnant? Use our interactive ovulation calculator to work out when you're most fertile and most likely to conceive.

TTC with PCOS (Thread #2)

999 replies

RoseBud2015 · 12/06/2015 10:56

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 the stats >>>>> HERE

Smile
OP posts:
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13
Freddiesmother · 04/08/2015 07:06

Its a BFN for me this time. I was expecting it and actually doing an early test helped me manage expectations. Will start again on third cycle of Clomid next week.

Zany - you poor thing sounds like they are giving you the run around. I think there are some NICE guidelines that you could 'quote' to support your case for a referral if you need to just search for PCOS NICE Guidance.

Pebbles086 · 04/08/2015 08:14

Oh zany I know how you feel!! I wish people would stop asking me that bloody question! It would be easier for me to be honest with my family, but why should we have to tell people? It's a very personal matter and I know people would be understanding but unless you've faced fertility issues, it's hard to understand how emotionally and physically draining it is on yourself and partners.
Sorry fredd at least you have next cycle to aim for. But still not what you want to hear.
Thanks ponty feel pretty shit today, the reality of it all has hit me smack in the face. Feel like such a failure, never thought it would be this hard. And I know even if IVF is an option I am a long way off even starting that process. Sad
So I ate loads of biscuits last night, then couldn't slepe cos of all the sugar and stuff running through my mind. Sad, tired today and annoyed at myself cos I'd wasted an hour in the gym lol xxxx

FeeFeeLaFew · 04/08/2015 08:38

Pebbles, take it easy on yourself. But I know how you feel. I keep thinking 'isn't it meant to be easier than this?!'. Anyway, onwards and upwards.
Welcome to the newbies (I have all of about a week on you...). You have come to the right place - these lovely ladies encouraged me to seek a gynae referral. So I got in touch with my endocrinologist's office about getting the process started ASAP, and was rewarded with my appointment with her being brought forward so that it's now tomorrow, after having my pelvic scan today. I will be writing down 1001 questions for her!
Banana, how have you found clomid and did you have your scan yesterday?
Dollface, congratulations!
Ladies - when you have no cycle at all, how much can you read into blood tests? Having read some of the comments upthread, I looked at my FSH and LH results, which were just described at the time as 'within normal range'. The ratio was 3:1 in January and 2:1 in March (and I'll find out tomorrow what they were in July). I saw 3:1 described as classic PCOS somewhere in this thread (by Elle?)- I hadn't realised that!
And ahead of the scan today I looked at the letter following the scan in January, and it said the lining was 'thin' - so I googled the value, 1.5mm, and realise now that that is really rather thin. I am truly nervous about what they will find this afternoon.

Dollface136 · 04/08/2015 08:47

Hi ladies. I had my appointment with the GP to get my 12 week scan referral yesterday. He said that the recommendation is to stop metformin when you are pregnant. I pushed him and said I had read a lot of research that it can help PCOS ladies avoid a higher rate of mc. He agreed that there was research showing that and that met definitely wouldn't harm the baby, so I asked him if he would let me stay on it until 12 weeks and he agreed.

Now the reason I am relaying this all to you is basically just for those having a hard time getting treatment. My advice is do your research, know what is possible, what you want to happen next and what research backs up your choice and go to your GP/consultant armed with your info. Don't take no for an answer unless they can give you a reason why that rings true with you.

Hope that helps somewhat if only as a pep talk Smile.

PontyGirl · 04/08/2015 09:02

feefee I know this is all too easy for me to say, but try to stay calm and keep an open mind about the outcome. Whatever is happening in there cab change v quickly, so what might've been a thin lining before may not be anymore. fx crossed for you Thanks

FeeFeeLaFew · 04/08/2015 10:20

Dollface, that's useful to know- thanks!
And Ponty, thank you, that's kind. I will try to stop speculating!

battenberg123 · 04/08/2015 10:30

Good luck with your scan FeeFee, I hope it goes well.

Pebbles yay for prescription! Hopefully AF will rear her ugly head soon and you can get on the Soy Isowhatyoucallthem, sorry to hear about the tubes Sad I don't think anyone really wants to go through IVF but you mustn't feel like a failure, none of this is your fault and we can't predict what our bodies are going to do.

The whole process of ttc just seems so painfully slow doesn't it, I think I preferred it when I didn't have a clue about any of this stuff!

bananafish81 · 04/08/2015 11:22

Hi ladies

Hi to the newbies, welcome :-)

I need to catch up on this thread, as been staying away since my gynae appt last week, when I got the catastrophic blood results, and it looked like I was having premature ovarian failure and the chances of even IVF were pretty slim

This is a long one, so strap in! Apols for such a long post, but quite a lot has gone on over the last week.

The last week has been so so hard, as it was a lot to deal with. I’d gone from being polycystic with a good ovarian reserve at 28, to seemingly pre menopausal at 33.

I was coming to terms with the very real possibility I might never be able to conceive, and seriously thinking about the possibility of donor eggs. And very, very, very sad.

However.

The scan last week didn’t match the bloods, as there WAS activity. There was a dominant follicle and the consultant wanted me to take Clomid to see if we could see any response.

Obv given the bloods, it looked like we’d need the sledgehammer approach to get any response, and the gentle nudge of low dose Clomid was likely to do bugger all

Except it didn’t. I took it Mon-Fri last week, and today the scan showed a nice ripe juicy 22m follicle, and 2 other smaller ones that the Clomid had kicked into gear.

Fuck. Me.

Consultant said he absolutely didn’t expect to see this at ALL. He was flabbergasted looking at the ultrasound screen. It is v v v good news.

Maybe the soy did something as well to get me to the point of getting a dominant follicle going in the first place, won’t ever know. But holy crap, my ovaries responded to Clomid.

My lining was very thin, so even if we do manage to catch this egg, the chances of implantation this month are slim. And giving me medication to thicken the lining would throw everything else out, and he doesn’t want to bugger around with my messed up hormones even more.

That said, I’m going for a trigger shot tomorrow, and should ovulate 36h later. If DH can get back to London by tomorrow evening, we’ve been told to DTD Thu and Fri to see if we can catch the egg. Not expecting anything, but we’ll give it a go just in case!

Hopefully if I ovulate, that’ll mean I have an actual cycle, and even if I don’t get a proper period because the lining is so thin, my cycle will be reset so we can redo the Day 3 bloods.

And more to the point, given I’ve miraculously responded to 50mg Clomid, then there is a v v v good chance that I should respond well to much stronger FSH stimulation for IVF. And that if the lining is looking too thin, we can freeze any embryos we get, give me medication to thicken up the lining and do a FET the next month so there’s hopefully a nice comfy lining to give the best chance of implantation.

The risk of multiples with injectables + DTD is too great, so injectables + IVF gives us a much better chance of a healthy pregnancy.

And whereas last week it was ‘there’s a slim chance of IVF working but it’s very slim’, it’s now ‘OK things are looking very good, let’s go full steam ahead and try and get me pregnant’

My consultant trained under Professor Robert Winston and is the lead clinician for reproductive medicine at Barts Hospital, so he knows his stuff. He said the bloods had him completely stumped and (his words) ‘I’m not usually stumped’.

So Christ knows what kind of medical marvel I am.

However the point is that what’s going on with my ovaries is what matters right now, not what the bloods say. And that’s a hell of a lot more positive than the bloods would suggest.

I asked him if I even still had PCOS, and he said yes, it doesn’t go away, it’s just that my bloods and ovarian appearance are likely completely thrown off course by all the medications I had to take over the years (incl double dose of a high oestrogen pill). So def to keep on with the low GL etc.

So hopefully I can still stay on this group as he says although I don’t look PCOS right now, I do still HAVE PCOS, if that makes sense!

Head still spinning, but now in a good way.

We have a plan. And things are looking significantly more positive than they were.

And breathe.

xxx

bananafish81 · 04/08/2015 11:50

Oh and Oranges, from one skinny hypermobile cyster to another - there are a lot of us here, wonder if there’s any relation between hypermobility and PCOS?

I have epilepsy as well, and there’s a higher incidence of PCOS amongst epileptic women, but no idea about hypermobility

BTW nice work on putting on weight! I was BMI of 17.5 and consultant said def needed to put on weight, so I worked really hard at getting up to 18.5 - he said 18 minimum for treatment, but 19 better and 20 ideal. So you’re right on track!!

X x

bananafish81 · 04/08/2015 11:54

Oh that should be 22mm follicle - not 22m!

So trigger shot tomorrow, hopefully get AF in 2 weeks, go get Day 3 bloods done

Then 2 weeks after that , ie first week in September, go back to see consultant, and we're gonna get the ball rolling on IVF.

RoseBud2015 · 04/08/2015 12:44

Laaaaaaddddiiieeeessss!!!!! I'M BACK!!!!!!

We had THE most amazing time! Saw some incredible sights, ate unbelievably tasty food, had fantastic weather (and a lovely dark tan) and most importantly had TONNES of non-ttc related sex Wink Wink.

I strongly recommend those of you that are struggling get yourself on a nice hot holiday away somewhere- the time away has done us both so much good!

I've read through all 13 pages I missed since being away and have updated the stats list Smile I can't respond to everyone but there are a few of you I want to say stuff too.....

Lizzy Chandelier and Dollface HUGE CONGRATULATIONS!!!! It was so nice to be able to put 3 new red stripes across our stats sheet..... maybe I should do away more often if this is what it results in Wink Grin

Battenberg Aww thanks for thinking of me when I was away- you are too sweet! Did you manage to keep at the metformin in the end or did you stop taking it due to its side effects? How are you feeling now?

Freddie You, my love, have given me soooooo much hope that 150mg clomid can work for me! I start it soon after 50mg and 100mg doing bugger all. How old are you and how long have you been ttc?

Bananafish So glad to hear that you now have a plan in place and have ov'ed- fab news! I'm so excited for you! Are things moving forward so quickly for you because you have gone private? I assume so?

Clare, Fee, Elle, SirBoob, Mrsbiscuit, Alpha, Oranges, Zany, and Tri- WELCOME!!!!! I have added each fo you to the stats but have some info missing. Could you have a look at this link and let me know your updates?? -->>>> HERE

OP posts:
RoseBud2015 · 04/08/2015 12:47

As for me, I'm cd54 no sign of AF or OV (surprise, surprise!) so I POAS yesterday- bfn obviously.... so started provera today ready to start 150mg clomid! Smile

OP posts:
bananafish81 · 04/08/2015 14:00

Welcome back Rosebud - we missed you!

Your holiday sounds fab, and so, so, so much needed.

Yes, I'm private and we discussed the pros and cons of what we do now. Basically there's two parts to consider - getting an egg, and getting pregnant. I had a thin lining anyway, and Clomid has thinned it further (common side effect)

I've responded to the Clomid, so am on track to ovulate, but it's unlikely I'll be able to get pregnant with such a thin lining, as a fertilised egg is going to struggle to implant.

It IS possible to take supplementary oestrogen to thicken the lining, but with my hormonal profile being so all over the shop, throwing something else into the mix isn't really advisable, as who knows what'll happen.

Injectables don't thin the lining, but if I've responded to low dose Clomid, there's a risk of responding too well to injectables to then try and get a BFP by timed DTD. If we got too many follicles, the risk of multiples (esp given my health issues) would mean the cycle would have to be cancelled

In my case, (controlled) hyperstimulation with injectables with IVF seems to give me the best shot of getting eggs and then being able to give me the best shot of getting pregnant.

I'm very lucky to be able to proceed so quickly - we had a v frank chat about pros and cons and this seems by far the most sensible option. Esp if I'd end up here anyway after failed Clomid cycles as my lining was too thin to conceive.

stealthbanana · 04/08/2015 15:58

Bananafish hurrah! That's so quick too! sounds like you've got some good options

Hi to everyone else too - good luck to those being scanned/poked/prodded soon, and Flowers to those with AF/ no AF / BFP issues [delete as appropriate!]

So I had my HSG today. They almost wouldn't do it as DH and I DTD last weekend (cd4) and the radiologist said I could be pregnant. Oh the irony! I stood my ground and in the end after 10 minutes of arguing they went and got the doctor - who agreed it would be a medical miracle if I were pregnant so she agreed to do it. Phew! Anyway everything was absolutely fine, which is good news. And it didn't really hurt either, mildly uncomfortable at best. The radiologist said I had a high pain threshold Grin

So, another test crossed off the list. Onto the metformin again!

Freddiesmother · 04/08/2015 17:10

Welcome back rosebud! So glad you had a nice time love a bit of holiday RomanceEnvy

I am 29 and have been trying for 3 years. I already have one ds who is nearly 4. I have had a diagnosis of pcos since I was 18 and have never had periods so his conception (after 5 years of unprotected sex) was a huge and wonderful shock.

He is desperate for a sibling and asks me almost every day when his baby sister is coming which is heartbreaking. I know I am so so lucky to have him but I don't think it means I want another baby any less than if i didn't have him ifswim

The lower doses of clomid did Nothing for me so fingers crossed for you rosebud.xx

alphabook · 04/08/2015 17:17

Thanks for the welcome! I'm 28, TTCing number 1 and I'm currently taking 100mg clomid and 2000mg inositol.

Glad your HCG went OK stealth, I was absolutely terrified before mine but I found it wasn't bad at all.

PontyGirl · 04/08/2015 18:01

bananafish wow - there are no words really! It sounds like you are in terrific hands. I will be keeping everything firmly crossed for you in the coming weeks Thanks

the only thing I have to add today is - fuck it, I'm going back on the inositol (last time I gained a helluva lot of weight but I'm thinking - hoping - it was down to my then-love of Subway)

PontyGirl · 04/08/2015 18:07

in fact, can any of you cysters on inositol recommend it? has it made a difference? I was on it for a month and noticed nada

FeeFeeLaFew · 04/08/2015 18:37

Bananafish- woah, what a rollercoaster, you medical marvel, you! Great that you responded so well to the clomid. Fingers crossed for the new plan you are forming- sounds like you are in great hands.
Rosebud, thank you for the warm welcome. My stats are correct.

So, I had my scan today and alongside all the usual polycystic cysts there is now apparently a 9cm (benign) cyst. Gulp. Seeing the doctor tomorrow but the sonographer (is that what they are called?) was fairly sure I'd need an operation to remove it. Hey ho, another hurdle (!!! I did not sound this sanguine this afternoon). So I don't think I will be put on clomid anytime soon.
Has anyone else had an ovarian cyst like this?

alphabook · 04/08/2015 19:57

I take inositol and it's made a huge difference for me. My first 2 rounds of clomid I had borderline 21 day progesterone in terms of whether I'd actually ovulated or not. By my 3rd cycle (when I'd been taking it regularly for a decent amount of time) my progesterone levels were massively improved and I concieved. Might be complete rubbish but I seem to remember reading it takes 3 months for any change in diet/supplements to make a difference so I would give it a few months and see if it's helped. I can't recommend it enough.

stealthbanana · 04/08/2015 21:16

Well I spoke too soon Sad

No abdo pain but started vomiting an hour ago and can't stand up I'm so dizzy and prickly. Called 111 and they wanted to send an ambulance! Got a taxi and am in a&e waiting to be seen - I must have an infection Sad

PontyGirl · 04/08/2015 21:24

alpha thank you so much for that recommendation!

stealth oh my god - I hope you're okay. update us when you can. please take it easy Thanks Thanks Thanks

PontyGirl · 04/08/2015 21:27

feefee I know quite a few women who have had one big cyst and they vary from being 20 to 40! actually seems quite common at the moment which I know is weird to say but I know 2 in the last few months who have had to have them removed! from what I gathered, it was a very straightforward procedure and they were out within 24 hours of surgery. I knew one woman who had one the size of an orange around her ovary, and she was absolutely fine. I'm sorry it's yet another thing for you to deal with though Thanks annoying and totally fucking unnecessary but not insurmountable Thanks Thanks Thanks

PontyGirl · 04/08/2015 21:27

*20 to 40 being age not cm's Grin

alphabook · 04/08/2015 21:50

FeeFee I've never had a big cyst before but hopefully it's a straightforward procedure to get it removed.

Oh no Stealth, I hope you're OK and you feel better soon Flowers