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

Hi Rosebud :) i', 26! I'm here in NI. Usual for us unfortunately :(

I weigh loads, I hate it. But I exercise three times a week, not a chocolate or snack fiend, don't drink much... but I struggle to lose weight. I lost three stone a couple of years back but only because I was seeing a personal trainer twice a week which almost bankrupted me.

I am a worrier and now I've got in my head they won't help me unless I lose loads of weight.

Hi ladies. I am so sorry for going awol for so long.

I have no news I'm afraid. I stepped back from the thread because I felt quite hopeless and after a few weeks I sort of convinced myself that this is never going to work and started to plan a life with no children. I even began to convince myself that it wasn't so bad but I've been brought back down with a crash tonight. DH has gone out and found out that there is yet another pregnancy in our friendship group.
When he told me I just started to cry and it's not stopping
I apologise in advance for the next few sentences, they are horrible but I need to get them out. The person who is pregnant is horrible. She's a selfish person who's relationship is terrible (constant fights, breaking up / getting back together). She wasn't trying but has managed to get pregnant - I hate her for this.
Most of the time when I get this news I feel sad but know that its my issue. This time I feel so angry that I want to demand we cut her out. I know I can't do that (and I would never say it out loud) but it hurts so much.

Sorry to come back on such a downer but I honestly couldn't think who else to talk to

Nurse That does sound quite unfair when you compare it to the rest of the UK where most have to wait a year ttc before being referred but then the referral is usually (unless they lose your referral form ) quite quick. Can your doctor not give you any meds to try in the meantime? What about metformin? And provera to bring on a bleed if you arent having regular AF? Hopefully you wont need the gynae appointment- fingers crossed!

Sophie So at my fertility clinic you have to have a BMI of 30 of less to receive treatment (clomid, IUI, IVF) but at other clinics the limit is a BMI of 32. However even if you are above these two limits, this wont stop the clinic from doing all of the investigative tests for you (i.e. bloods, sperm analysis etc) It also doesn't stop your GP from prescribing metformin which is what a lot of classic PCOS sufferers take to control insulin and aid their weight loss (as it helps control blood sugar levels) when TTC- maybe you could inquire with your doctor for this? Another thing to try is a GI diet. A friend of mine with classic PCOS lost 7 stone in 2 years on this diet and conceived on her first month of ov'ing! No meds except metformin, and a strict GI diet plan. She had been TTC for over 4 years! Try to stay positive- it's very very early days for you! x

Isit You're back!!!!!!!! I've been asking after you! You must have heard my calls! It so good to 'see' you! I'm sorry to hear you have been baby-bombed yet again. I KNOW how it feels all too well- It f*cking sucks especially when you know how little they have tried and how ungrateful they are for the ease at which it happened.
How is the clomid going? Are you still taking it? Have you seen your consultant to discuss next steps? It's certainly not the end of the road for you yet! What about IUI or IVF? xxx

Hi. Sorry I sort of appeared on this thread and then dissapeared very quickly.

So after charting for my first cycle (never tracked my periods before in my life as I didn't see the point) my cycle was 40 days!!!! The day I had just convinced myself I hadn't actually ov'd properly and then my period started that afternoon.

I'm feeling ever so fed up. (I know I've only been trying 6 weeks and a lot of you have been trying an awful lot longer so don't hate me!) but I did this last time when we ttc DS. Every negative preg test seems to break me a little.

Sorry I have no words of wisdom for others today and I am being very selfish so here are for all.

Do you find using OPKs more useful with PCOS? Or less? Last month by body seemed like it wanted to ovulate on day 14 of cycle - EWCM, migraines, spots, increased libido and showed high fertility. Then dropped down to low and eventually reached peak fertility on day 38 of cycle, AF arrived the other day making it a 51 day cycle!

Oh and Agnus Castus... what are your thoughts?

Yeah, I only managed to get a gynae referral as i had been having severe abdo pain and no period for 7 months, I'm an nhs nurse so insisted I wanted a gynae referral, I think fertility services are totally separate here in NI! My GP wants to wait and see what they say before starting any meds - however he done some bloods last week (3rd set of hormone profile, shgb and testosterone so I am hoping he will ring tomorrow with the results of those. I have been able to look at the results myself in work and the shgb blood confirms pcos for sure - blood sugars where normal (4.5) but a month ago had one that was high (7.0) so I might ask for metformin when he rings! 5 weeks wait at the minute for a GP appointment in my surgery!!

Ps - angus castus did nothing for me!

Hi Rosebud it's good to be back!
I have a consultant appointment in 2 weeks so will hopefully have more news then.
I reduced my dose to 100mg (clomid) and still ov'd but as I'm only oving every other cycle we saved the tablets and didn't bother last cycle, however, this now means I've had no AF. I'm on cd40 and no real sign except hormonal irritability.
IVF would mean I would need to lose weight before it became an option - I'm still plodding along with this but I'm not trying my hardest and it's very slow going.
However, DH has found his inner optimist and is relentlessly pushing us forward which is good.

I tried to catch up on the thread as much as I could. Any news from the IVF clinic rose ?

Also wanted to say I'm very sorry for your loss mistletoe

And congratulations to freddie on getting married!

Ladies, i'm really struggling with this PCOS. The consultant at the hospital told me that using the clearblue digital fertility monitor would accurately predict if I ovulated, so used it last month and I did ov (But still didn't get caught) I forgot to re-programme it for this month so couldn't use it, so I used the clearblue digital ov tests and they didn't pick up on ov so I assume I haven't this month?

The thing i'm finding hardest is what you're supposed to eat? The consultant said losing weight can help you to regulate the pcos and ensure you ov. My BMI is almost 27 so I guess i'm overweight. The plan is to not worry too much right now as it's so close to Christmas, but i'm joining slimming world in January. But looking on the internet I am seeing that you shouldn't eat any chocolate/sweet stuff at all, no dairy, no rice/potatoes? Is this true?? I though by following SW and losing a stone or two that would be enough regardless of what I was eating?

Once my period is out of the way i'm going to start temping and hopefully i'll know for sure if i've ov'd.

I was discharged from hospital last month after my hycosy showed my tubes were fine. I declined clomid as I ov some months (more than not) and still don't get caught so what's the point in clomid? Not sure where to go from here.

IsIt - welcome back. Sorry to hear you were preg-bombed. No need to apologise, this is a safe space!

Woody and Sophie - what rosebud said. You really need to push for a prompt diagnosis, there seems to be an awful lot of fobbing off.

Village - welcome back too!

Am not going to comment on weight loss as it's one of the few issues I don't have, but in terms of eating you need to avoid doing anything that can flare up your insulin ie sugary and high GI foods. I think high protein low carb is best but if like me you can't tolerate that then low GI is the way to go. Metformin is v helpful for this as it makes you feel sick if you eat too much fatty sugary stuff (at least it did for me - as a result of cutting back on chocolate and alcohol etc I lost 5kgs in a fortnight and my bmi dropped too low and I've had to force feed myself back up again with avocado and peanut butter etc).

Rose - glad to hear you're back in the saddle. Hopefully the hycosy goes without any further drama and you hear from the clinic soon.

AFM, I'm on my provera so hopefully AF later this week/early next. Went to an absolutely USELESS acupuncturist this weekend. Think I'm going to give it a rest until the new year - I'm really not convinced it's doing anything for me. Also went to a 4 year olds birthday party on Saturday definitely made me feel better about not having kids, it was exhausting!

Am all booked in for scanning in my home city so will be able to do clomid this cycle so that's good. Not really too worried about getting pregnant (we certainly won't be able to do IUI), just more focused on establishing if I actually respond at 100mg. If I do, great, we'll have another go in the new year. If not, I guess I'll have to choose between ovarian drilling and IVF.

Rose it's funny you say you haven't heard v many good stories re ovarian drilling. My consultant was VERY pro drilling - he said he had over 90% success rates with it. I've done some research on line and the 2 things that concern me about it are (1) it seems to be vastly more effective for people who have LH>10 (ie raised LH levels) - I don't, my LH is normal at 5.8 and FSH:LH is 1:1. And (2) it actually has the same success rates as injectibles - they recommend it in cases where it's impractical to do the detailed monitoring you need to do with injects, which isn't applicable to me. I guess we'll see!

The very words "ovarian drilling" sound..... well, delightful!! you'd think they could come up with a better name for it!!

nurse
It's actually ovarian diathermy now, but for some reason drilling has stuck as the common name for it. I agree! Mind you, the alternative of describing what it actually is (shooting lasers or electricity into your ovaries to burn holes in them) isn't that appealing either!!

The very thought is a bit cringey!! However.... lets admit it.... if it made them work as planned then i wouldn't be one bit worried what it was called!!

I am a parent because of having laparoscopc ovarian diathermy (there were funding issues around the injectable drugs at the time so was offered this.

Basically this procedure involves the surgeon puncturing the cystic follicles on the ovaries (so not the ovary itself) with an electrical laser or needle. This can kickstart the ovulation process.

Village fete - some people find using a low GI/GL eating plan works well with regards to PCOS and it is sustainable in the longer term too. Collette Harris has also written some cookbooks as well.

Temping can also be very problematic with PCOS as well because you could end up with a mountain range of a chart that is nigh on impossible to determine with any degree of accuracy. Would refrain therefore from charting.

OPKs are very uneasy bedfellows where PCOS is concerned because these kits read LH. If there is an excess of this hormone anyway the kit ends up reading that and thus giving you a false positive result. IIRC the kits actually state that these are not recommended if PCOS is an issue anyway.

Stealthbanana - IVF should only be tried after absolutely all other treatment options have been exhausted. I would seriously consider diathermy surgery initially (IVF is not always readily recommended for PCOSers because of the very real risk of ovarian hyperstimulation).

Isit Glad you have an appointment in a couple of weeks- hopefully they can move you onto the next stage. Refresh my memory- have you had a HyCoSy to establish why you ov from one ovary and not the other? Keep going with the weight lose Mrs- you can do it!

Village Like Stealth said, I cant really comment on weight loss advice either as I have lean PCOS except to say that I know a low GI diet helped a friend of mine ov and get pregnant after years of trying! I'm sure some other ladies will be along shortly with some great advice.

Stealth Interesting about the drilling, just goes to show how differently different clinics are in terms of advice and preference! Hurrah for Provera- it's a godsend for us girls with useless ovaries isn't it?!

I have just received my protocol from Reprofit via email and I think it is the mini IVF protocol because its for Clostylbegyt and 75iu Menopur. Then Pregnyl or Ovitrelle as my trigger shot. Next is to wait for my scanned prescription and then source my drugs! I feel completely out of my depth at the moment! Banana Vixx or anyone else....Any words of wisdom?

Yay rose. You can do it! Am excited for you that it's all starting.

sadly this cycle I don't think provera will speed things up much - I'm already on cd37 and will only finish provera tomorrow (am doing 5 days rather than the 7 I've been given to see if that works) so will not get AF probably until cd45ish, which is when I normally get AF anyway even on an anovulatory cycle. But, yes, for next year I will be popping those pills like smarties!!

My major other issue with ov drilling is that we as yet don't have any view on how much of an issue DHs morphology is going to be. So I hear you attila but also I'm not going to shy away from IVF if it's the right solution for us!

Exactly why IVF was recommended for us Stealth- IUI or ovarian drilling aren't much use if your sperm are a bit on the low/slow/wonky side like our DH's!

Thanks for the welcome back Rose and stealth
I had my hycosy a year ago - it showed everything ok with both ovaries / tubes, however, apart from the 50mg Clomid dose which I didn't respond to, I have ov'd every other cycle. I did 2 cycles of 100mg, 1st one worked, 2nd one didn't. Same with 150mg so I decided to save some of the tablets and the horrendous hormone side effects and do 100mg again last cycle. I ov'd but no BFP. And now this cycle has gone on and on.
However, I'm battling on through!!

With ovarian drilling, it wasn't even mentioned as an option to me. My consultant seemed surprised when I mentioned it - she told me we would try metformin, then clomid then IVF. No alternatives! I'm open to the idea if it's offered because IVF is a big jump, but luckily for me, I'm the one with the issue and DH (and his sperm) are all ok.

stealth fingers crossed for you responding to clomid this cycle! And I don't blame you for keeping your mind completely open to all your options - we need to when dealing with this issue, it changes so much all the time!

Rosebud woohoo for the progress you're making!! Please don't feel out of your depth, I'm sure others will be along soon to talk you through it

Yes it's a weird mix for DH - because the count and motility are so high there's a question mark over the morphology. The 2nd place we saw suggested that we could do a IUI and they could take a look at what his sperm looked like as a result of that and then figure out whether to go for drilling or IVF based on that. Clearly that depends on whether I actually respond to the effing Clomid or not!

Isit it's weird w the drilling. I am reading some really contradictory stuff. I want to do some more research on whether it might be right for me - will post anything interesting I find article/study wise. It's completely bizarre that you only seem to ov from one side given no tube problems - do the follies just not grow on the duff side? Bizarro! Would definitely be investing in a few scan cycles to check that out.

I have blood tests next week so will push for the ovulation test too.

Have you ladies been using OPK kits? Or are they really not great with PCOS? I started with the agnusCastus too. Thanks for the tip 🙌

Welcome back Isit we missed you! Good luck for your upcoming appointment, we’re all rooting for you

Hi to all the new ladies - it’s a lovely bunch of women here

Village like Rose I’m also lean PCOS so can’t really comment too much, but even as someone who was then underweight and being told by my consultant to get my BMI up, he also told me to eat low GL as PCOS is essentially a metabolic condition. Although eating low GL will very likely help you to lose weight as well, it’s recommended to eat low GL whatever your weight, if your PCOS. Tonnes of luck xx

stealth thinking of you, and keeping everything crossed for this round of Clomid.

Rose yay for getting your protocol through! A woman on my low AMH / high FSH thread on FF is about to give birth to a baby boy, thanks to mild IVF at Reprofit (as with short protocol, it’s fascinating how similar protocols are beneficial for both ends of the spectrum - i.e. very high responders with PCOS, and very poor responders with diminished reserve). She had a femara protocol with a smidgeon of Menopur added in, rather than Clomid, however, as she was going for a fresh transfer after egg collection. Quite a few women on the thread have also had good results with mild IVF using Clomid at other clinics - in all cases these were banking cycles because of Clomid’s impact on the lining. Do I remember rightly that you were planning a freeze-all cycle? Afraid I don’t know too much about mild IVF, but seems to have great results and be much easier on the body. I seem to remember the lady @ Reprofit mentioning she had a little antagonist added in towards the end to prevent early ovulation before trigger, but everyone’s protocol is different. When are you planning to start your cycle? Really excited for you!

18 days into down regging, and currently in the waiting room to see my consultant for baseline scan, to see if I can get the green light to start stimming tonight

Not even a hint of a bleed, despite trying to invoke sod's law by wearing white knickers & not having any pantliners or tampons in my handbag. Emailed his secretary in a panic last week in case lack of AF meant my cycle might get pushed back (and thus postponed until the new year given Xmas closing dates) - she checked with him and said it shouldn't affect this cycle but we'd discuss more today. So really nervous as to what the scan will show - ironic that given my thin lining and 'sleepy' ovaries, I'm now worried the lining won't be sufficiently thin or the ovaries sufficiently 'quiet'!

…and oh the irony. In order to move forward with our IVF cycle I have to go on the contraceptive pill for the next month. Yes, really. The buserelin had thinned the lining, but the ovaries weren’t quiet. Somehow - possibly a hangover from the stims - my body powered on through the down regulation and somehow ovulated (and another wasted egg, as no way I could have had a miracle conception with completely non existent lining). So somehow I went from being PCOS and not ovulating, to somehow ovulating twice in one month, but had no bleed. FFS, can’t my body do anything it’s supposed to?

So the cycle is delayed until after Xmas as I have to be fully suppressed before we can crack on. Which means taking the pill for the next 4 weeks, so that when I go back first Mon in Jan to be rescanned, then I can hopefully start stims…

Hi all. I keep thinking about posting and then I stop because I don't know what to say to you all. A lot of you are talking about things that I have absolutely no clue on. I still don't have a diagnosis so I just feel in mega limbo! I wish could contribute and say helpful things to you all.

To the person who said she has been told that there is a big waiting list to see the fertility clinic...well I was told that a month a go and then suddenly yesterday I got a call from the hospital saying they have a space free this week on Wednesday. So, don't give up!

Rosebud: thank you for thinking of me regarding my doctors appointment. Nothing came from it apart from him telling me they've lost my blood test so apart from finding out that I don't have diabetes (which I knew from ringing up) he couldn't tell me anymore info on my hormone tests. I left feeling like I just wanted to give up and then I got a call from the hospital to book a fertility appointment so that was a bit bizarre.