New fellow PCOS-er

Hello everyone :D

Well after 7 months of no AF, I was diagnosed yesterday with PCOS, so wanted to join in your discussions and get to know fellow PCOS-ers. I've always read the threads in here and was interested to see people's progress, and it feels a little surreal that I'm now able to join in the discussions!

Here's my story so far:

I got AF when I was 12 and had pretty regular cycles but very heavy AF. I went on the pill at 15 and 10 years later came off it to sort my system out before TTC. 7 months later no AF, so went to the Dr. I'm within the healthy weight range, no other symptoms, no pain, so the Dr said he doubted PCOS.

My initial BT came back 'normal' (whatever that means!) so I went for an ultrasound yesterday. It was horrible. I was prepared for an internal u/s, but what I wasn't prepared for was the running commentary of the nurse who was showing a trainee what to do. I found out I had PCOS by the nurse saying to the trainee "See here, she's riddled with cysts so she has PCOS. That's not what she wants to hear but it's good for you to see such a severe case" :eek: and then turns to me and says "I know that's not what you want to hear, so just ignore me" :eek:

I met with my new GP (my previous one left last week and referred me to his colleague) late yesterday afternoon and she has confirmed that I have PCOS. I went for another BT today to test for glucose and male hormones. She suggested that we TTC naturally for 6 months and if nothing happens to start on metforim and take it from there. I go back to see her next week for my latest BT results.

I was in a horrible state yesterday, but today am feeling much more positive, especially thanks to fellow BB buddy butterfly_warrior who sent me an enormous amount of excellent information and provided some much needed insight and support (thanks again BW!).

So where to from here? Well DH and I are now trying to decide when to start TTC - the whole 'should we try for a miracle now' vs 'are we really ready for a bub'. The one thing I know for sure is that I'm going to focus on getting as healthy as I can (low carb/GI diet coupled with natural therapies) so that I give my body the best chance it has!

So that's my situation, never one I thought I'd be in, and am looking forward to hearing from fellow PCOS-ers and sharing our journeys :biggrin:

Suz

Awww, Thanks Suz! You've got me blushing now.

Seriously - the information was no trouble at all. I tend to be a researcher - whenever I encounter something, I research lots and find out as much as I can about it. I am starting to think about writing it all up into some sort of "so you've just been diagnosed with PCOS" article. Although, for some, that sort of information could be a little overwhelming.

When it comes to whether to TTC or not... The way I see it, you've been 7 months without AF, so chances are that it's not going to happen without some sort of intervention. Get on the diet, get the weight loss happening (yep it's weird to have to think about that when you're already within a healthy weight range!), see if eating right, exercising and all that sort of thing brings your cycles back - that will give you some indication of whether TTC naturally for any length of time will be successful or not. I wouldn't suggest jumping in to TTC just because it may be difficult, wait until you are both ready, but you can always do what you can to get yourself to a stage where it may be possible.

You've got a lot of information to process for now, but just remember that you've got a great head start here and when you do decide you are both ready to TTC, you'll know whether you need the help of a specialist (and metformin and/or clomid) or not.

BW

HI Suz -I just wanted to pop in to say again that whatever support i can offer is yours. You've been such a wonderful friend that has been there to help me out in many difficult/trying times so if there's any way - some how that i can return the favour just let me know.

I have complete faith that you and Andy will make it over this hurdle with flying colours. You are a strong and well informed woman who always attacks life with confidence and determination. And as for the whole 'when to TTC' - you guys will just know when it's the right time to start!

Wishing you the best of luck as you receive more BT results tomorrow :hug:

Thats great that you've at least got some answers and something to work from now. I am a PCOS sufferer and also a success story. I to had longer than normal cycles.My cycles were anywhere up to 3 months apart and we'd been ttc for well over a year before I sought help(even though I knew something was not right with me). I had the ultrasound and all the blood tests and thats what got me diagnosed with PCOS. I tested negative for diabetes and my blood sugar was completely normal, I was normal weight, ate very well, exercised, my bloods came back high in male hormone(NOT what a girl needs to hear!), and my progesterone levels were 2!!(basically non existent) so I was only put on clomid 50mg(not metformin) and what do you know second cycle I feel pregnant with Gemma and with Jasmine it was my first cycle on it.

To be honest after I was diagnosed it took me 3 months to actually go back and see the fertility specialist and get my script for clomid. I needed to de research and get my head around the whole thing, that there was something wrong with me. Things will happen, they do take longer because we have a medical condition but there are options for us.

Goodluck with everything hun..............xx

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I found out I had PCOS by the nurse saying to the trainee "See here, she's riddled with cysts so she has PCOS. That's not what she wants to hear but it's good for you to see such a severe case" :eek: and then turns to me and says "I know that's not what you want to hear, so just ignore me"

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:eek: That is totally rude and unprofessional! Not to mention, it's not even correct. People can have cysts and NOT have PCOS ... that's why they leave the diagnosis up to a Dr who has access to your blood test results and other medical history. It's probably the last thing you feel like doing at the moment, but I would be writing a letter of complaint if that happened to me. Having a student is no excuse for unprofessionalism. I'm a health professional and have trained plenty of students, and generally if I'm not comfortable saying something in front of a patient, I won't say it to a student full stop - it teaches them bad habits.

Sorry ... got off track a bit, since that wasn't the main point of your story :)

With regards to the TTC naturally for 6 months .. there are pros and cons. Metformin can have a lot of beneficial effects for PCOS (e.g. if your blood glucose levels are a problem) that aren't just related to fertility, as it's not primary a fertility drug, so it's worthwhile discussing the pros and cons with your Dr, irrespective of whether you plan to start TTC straight away.

For me, the metformin helped me to lose weight in the short time I was taking it before falling pg. I wasn't as stringent with my diet as I should have been - I was struggled with coming to terms with my own PCOS, my DH's spem issues, and a stressful work environment, and a total overhaul of my diet wasn't something I was in the right 'headspace' for, but I'm slowly starting to change my diet to be more PCOS-friendly, in preparation for trying to lose post-baby weight.

Suz - I had no AF for 10 months, and metformin did the trick for me. It kickstarted my cycle and I was pg the 2nd cycle! Of course, other people need more than met, some need clomid to help get pg too.

I agree, talk to your dr about met even if you're not ttc'ing yet. It helps with insulin resistance, which in turn helps to balance out the hormones.

I too am within the healthy weight range.. but I used to be underweight, and after getting married put on weight (to within the healthy range!)... and the dr said this could have been the trigger for the 'syndrome' (always had polycystic ovaries).

Good news is that the pg seems to have fixed me! My cycles have never been so clockwork! They are a bit long, but clockwork nonetheless :) So there is hope.

I hope now that you have your diagnosis, you can start looking towards treatment and that BFP! Good luck :)

Just one thing about metformin and glucose levels...

It's entirely possible to have normal glucose levels and still be insulin resistant. Insulin resistance just means your body needs to produce more insulin than normal in order to control blood glucose levels. I'm told that if your blood glucose levels are elevated, then it's actually type II diabetes, not merely insulin resistance. Metformin will help your body use the insulin it is producing, so that it won't need to produce insulin in such excess. I guess it acts as a kind of "hearing aid" for your cells - stops the body from having to SHOUT SO LOUDLY to get them to use insulin.

Liz, I was reading somewhere (I think it was John Eden's PCOS book) that there is a type of PCOS that resolves after pregnancy - I'll have to look it up again, I'm a bit too brain-fogged at the moment to recall exactly what was said.

Suz, I feel bad for not emailing you again - I've had a few dramas here lately, but things appear to be getting back to normal now, I'll be in touch soon if I survive the return to work tomorrow.

BW

True about the blood glucose levels BW! My BGL's were normal, as was my fasting GTT, but the fact that metformin helped me to lose weight makes me wonder about insulin-resistance.

Interesting about your cycles Liz - it will be interesting to see what mine do after Bean is born. They have been irregular and very loooong since my first period at aged 12.

I also liked that metformin taken thru the first trimester 'may' reduce the risk of miscarriage - which is higher for pcos women.

Now that I have good cycles, and am about to TTC again, I'm actually a bit nervous not having metformin on my side!

Yeah Cherie - and the cycles started when Tallon was 3 months old - and we're still breastfeeding - goes against the whole pcos thing AND the no AF while breastfeeding thing! LOL. Well, I'm certainly not gonna complain ;)

Yeh I did hear that metformin taken through the first tri can reduce miscarriage......a great benefit. My cycles are back to normal after 2 pregnancies so Im pretty happy about that.

Metformin actually has something in it that for non-diabetics it reduces your hunger. Many people actually use metformin not as a fertility aid but to help them loose weight instead.

Thanks for all of your support ladies! :biggrin:

Well the BT said that I have unusually high male hormones (pretty much double what I should have), but all other things are within normal range (glucose etc.).

My fab GP has now put me on metformin - she said that TTC naturally for 6 months would be pretty much a waste of time for me and thinks that the metformin will kickstart my cycle (probably the wrong term to use...). She said that I should get AF within the the next couple of weeks, and I have to gradually increase my dosage until AF arrives and to watch out for the side effects (nausea etc.).

If AF doesn't arrive in the next few weeks then she is giving me a referral to Dr Pardey (Fletch's fab gyno!). Either way, I have to go back to my in 3 weeks to check on my progress. She is also running some tests to check my rubella immunity, and if it needs a top up she is calling in the next couple of days (please no more needles!!! I'm such a wuss!).

She also wants DH to have an SA to rule out any issues there too :biggrin:

So all in all I'm feeling pretty happy...well maybe happiness is all relative...but I feel more confident now.

Kirsty77- thanks so much for sharing your story! I'm glad that I'm not the only one with those symptoms!

Cherie - I completely agree about the need to complain about my u/s. When I calm down from that I'll write an appropriate letter - hopefully it will prevent anyone else going through that.

Liz - thanks for your advice and sharing your story. It's so good to hear that pg seems to have helped your PCOS!

BW - thanks again for all of your advice! I definitely need to do more ready about insulin resistance etc. I'm just waiting for Dr Eden's book to arrive in the mail!

Rae - thanks for being an ever supportive friend :biggrin:

I'm going to do more research on metforim and read more about these extra male hormones, and also focus on just getting more healthy in general.

Thanks again girls, I don't know what I'd do without you! :biggrin:

Suz, I'm relieved to see you so much more positive about things now! Just one thing I'm a little worried about - were your insulin levels checked? My glucose levels were perfect, but my insulin levels were sky high... and a simple fasting insulin test wouldn't have revealed the true extent of the problem for us. I'm probably being a little paranoid here after my recent experiences, though.

Good luck with the metformin! I do hope it works for you, and I'm glad your GP was willing to start you on it - it's very new in terms of treatments and it is encouraging to know that some GPs are finding out about it now.

Oh yeah... after so long without AF, when she does arrive... :eek: Don't be afraid to rant and scream at doctors and remember the name cyklokapron if things get too bad. Something else I learned the hard way. :rolleyes: So typical for me!

BW

Suz - yay at the referral for Dr Pardey! He's awesome. Just be warned - he will probably send you for all the same tests again anyway. He did with us.

I didn't get a bleed until about 6 weeks into Metformin. I did 2 weeks of 1 tablet a day, then upped it to 2 a day (I didn't get any side effects) Dr Pardey ordered a BT for day 21 to see if I O'd ... and it showed I was about to O.. and that actually matched my FF chart :) So it was a long cycle that first one. So don't be disheartened if it takes a bit longer than a couple of weeks.

Good luck! Makes you feel so much better when you feel like you're finally doing something about it huh.

Hi Suz,

I just wanted to wish you the best of luck with metformin. I also have PCOS and I took low dose metformin for a few months and it really helped my cycles to be more regular. However in the end I also needed clomid to conceive and I was so lucky that it worked the first month I took it!

Anyhow I know how overwhelming it can be to find out you have PCOS and there is so much information to process! Just remember that you are definitely not alone, there are so many of us in the same boat! It sounds like your GP is on the ball and that is great, not many of them know a lot about PCOS!

Take care!

lis - that's true - not many know about Metformin being used for PCOS either. I know the pharmacist was shocked I was taking it for PCOS.. I went to renew my script, and commented that it'll be my last one (coz after the first tri I was stopping it) and he was horrified and asked why (coz it's a diabetic medication.. and people are usually on it for life!). I had to explain the whole pcos/insulin resistance thing to him LOL.

Hey Liz

I've just been on Tallon's website and OMG he is gorgeous!!! He's such a happy smiley boy!!

Aww thanks Kirsty! We think he's pretty cute ;)

Thanks for all of your support ladies :D

This is only my second day on metformin and haven't been feeling crash hot (meaning lots of trips to the loo - sorry TMI!) but hopefully it will all settle down soon.

Bring on AF I say! My stomach is sooooo bloated, looking forward to being able to keep my jeans done up when I sit down! PMSL

DH and I had a big d&m the other night and we've got a new plan for 2007 - we're going to start TTC later this year!!!!!!! woohoo!!!!! We want to travel first so will focus on getting my cycle regular by mid-year, then go to europe for a month and then start TTC :D

I feel better now that we have a plan, but still don't want to commit myself to an *exact* time because I don't want to put more pressure on myself.

I've ordered some books on PCOS and also low GI eating - would you believe that it turns out that a guy I work with is married to one of the pioneers of GI diets in Aus (and the world!). I'm meeting with her next week!!!!!:dance:

Anyways thanks again for your support :D

Suz, how much metformin are you taking? It's really important that you start on a low dose and build up slowly. I also found that in my first few days of taking it, if I took it with a high-carb meal, I had more stomach problems as a result. I can give you quite a few tricks on how to adjust dosages up slowly so that you can reduce the stomach problems, and you learn to identify which foods don't go well with metformin pretty quickly.

I'm glad you have a plan. I think it's quite sensible, too. Don't put too much pressure on yourself, and I do hope your GP is right about getting AF soon. Metformin alone wasn't enough for me, so don't beat yourself up too much if you can't establish a regular cycle, but I think that as you were regular in the past, it shouldn't be impossible - I never was.

BW

LOL Fletch no I'd never be away when the bubs are due - bonding time with Aunty Suz is very important PMSL

Thanks BW, I'm only on 250mg in the morning and night, but I am usually pretty sensitive to any meds so it doesn't surprise me (also getting over a cold too). I've been trying to eat low GI and low carb but have had a few minor slip ups (we had a morning tea at work with a yummy cake!) and I think that's what triggered it off :redface:

Thanks again :D

If it's too bad, drop to 250mg only once a day (probably night, if that's the meal you find easiest to ensure is low-carb), and when side effects have settled, go back to twice a day and work up from there.

I had terribly trouble with some of my arthritis meds - I had to increase by smaller increments, and take longer to do it, and sometimes I even had to alternate dosages for a while - eg 1 tablet, 2 tablets, 1 tablet, 2 tablets, 1 tablet, 2tablets, etc until I could finally cope ok on the 2 tablet days. It may take a little longer to get everything working if you have to do that, but it should make life a little easier.

BW

Lol at being around for the arrival of Tia and LF2 - that's a MUST!!! I said it earlier but i'll tell you again that i think your 'plan' sounds great - really positive! Sheesh - ok - TBH i can hardly contain how excited i am about the prospect of you guys TTCing in the near future...but i'll chill out - it's just my crazy preg hormones taking over :D

Hope your body begins to settle down a bit more with the meds!

Hey there SuziL,

I am pregnant now but was diagnosed with 'severe PCOS' last year after a complete absense of AF.

I went on Metformin and spent weeks on the loo, lol it was horrible, but I can assure you it will settle down. I started mine too fast, and what BW says is what dr's usually recommened, 250mg once a day for quite a while and then up it.

With metformin I finally started getting my periods again, and I also lost a dramatic amount of weight in a month with the help of metformin and a low carb diet (modified atkins). That is when I concieved, despite not TTC and only DTD twice that whole month. The doctors say it was just a lucky timing, that the dramatic weight loss combined with metformin that month was the key to make me ovulate at least once. I also have endometriosis and fibroids and was due to have surgery to have it all removed again this year, so my chances of conceiving and then having a viable pregnancy were medically zero.

So against those odds I conceived. And in my case my PCOS was considered quite bad, I had a scan just like yours by the sounds where they called in trainees to have a look at the polycystic ovaries.

I remained undiagnosed for a long time, mainly due to that one doctor didn't read my BT results properly, but luckily another one looked over them and saw that I had menopausal female hormones and very dominant male hormones. It's wonderful that they have diagnosed you and got you started on Metformin. I promise it will settle down in time the horrible metformin side effects. I noticed it got way worse if I ate white carbs, anything with fatty meat or drank alcohol...I would be in agony. The worst night I had was spagetti bol with a glass of red...that went wrong lol. But after a month to 6 weeks it really settled. My problem was that I started on them too fast though.

Best wishes with your TTC efforts, and be assured, it's definately possible to conceive with controlled PCOS.

Hi SuzL,

That's great that you have a plan, sounds like you are well and truly on top of things! I agree with the others about metformin, the side effects should settle down, mine did after about a couple of weeks and I was on the same dosage as you.

Great idea to have a holiday before TTC! We did the same thing, we went to europe for 6 weeks and it was one of the best decisions we ever made! We loved every second of it and it was great to get my mind off the whole PCOS thing.

Anyway good luck, I wish you guys all the best!

I started on 1 tablet a day for 2 weeks, then up to 2 tablets a day. I had no side effects tho? Was I just lucky?? Gosh - I didn't have to watch my food or anything!

I hope you don't have side effects for too long Suz.

Suz
Its heartbreaking how some people can just be so rountine in saying things which are basically shattering your whole concept of yourself and your future.
In a newbie PCOS too, although I need sneak a peak at the referral but GP has only written suspected to cover herself. I know that is it. Its a huge rollercoaster ride, where you basically go through the stages of grief on this diagnosis.
Ive just bought the John Eden book to do some reading up before our FS appointment. I want the drugs to loose the weight, Ive tried and done everything right and can shift a little but not a lot. I guess in some ways its a huge releif as I know that its not my fault but that is a huge relief in some respects but in some irrational way of thinking, such a waste of my life when with help I could have already been different. I went through stages of hating the GPs id been too, why didnt anyone ever suggest PCOS before now. Going to stop before I turn this to a vent as well! Im here when ever you want to travel this journey together.

xoxoox