Feeling Bleak - PCOS stories please?

[kittykitchn]

I'm sorry to creep in here. I've just been diagnosed with PCOS, I am desperate to hear some experiences, good or bad about the road ahead. I would love some success stories.
I've today been referred to the fertility clinic, which may or may not get accepted due to my age and length of time we have been trying apparently.

How long did you wait for your clinic appointment and what did they offer/how quickly? Did it work, after how long? Any statistics on the likeness of conceiving with PCOS? Is miscarriage really so much higher?

I have chronic fatigue syndrome, depression and low sex drive. We rarely have sex unless I really push myself. I thought chances were bad before this, now I feel like my world is ending. It all started suddenly four months ago and now Im not ovulating at all.

 

[Rainbow1234]

I don't have anything much to add but I'm sure I've noticed in the signatures of quite a few tri 1 ladies that they have PCOS so there is still hope. I hope they give you answers at your appointment x

 

[hayes]

My friend was diagnosed with it a while back now I think she had scams to determine that she wasn't oving n needed Clomid. Not sure how long all this took but wasn't horrendously long wait. She conceived on month 4 I think of Clomid n now has a lovely baby girl. Fx u will get the help quickly n get it bfp soon.

Michelle.x

 

[summer15]

I have PCOS. I lost my first pregnancy at 6 weeks in October, I'm now pregnant again (6wks 4 days ... and counting) my GP has referred me as a high risk pregnancy but doing my very best to stay strong and keep a positive mind. With my first pregnancy my HCG levels were never good - this time they've been really good and so have my progesterone levels so fingers tightly crossed ...
We were told we might struggle to concieve naturally but we conceived twice in 4 months so just praying I have a strong little bean this time and carry to full term. Keep the faith hun. I took pregnacare pre-conception vits and also a vit called myo-inositol (lots of stuff online about it being good for PCOS fertility) I also had acupuncture (and am continuing to have it to support this pregnancy) I truly think these helped. Xxx

 

[KWarbee]

I'm sorry to hear this kitty. I don't have any experience of this personally but a friend of mine has pcos. She has 2 children and is now TTC her third. When she was trying to conceive her 2nd she was prescribed Clomid and she conceived him on the first cycle. She's now on cycle 3 of Clomid again and seems quite positive. She has suffered one mc in the past, but this may or may not be related to pcos.

xx

 

[JJ Mum]

Kitty, I have no advice, but pop into the long term fertility section they have lots more info and ladies trying clomid, for chatting and support from each other but loads of success stories that Iv'e see on here.

Good luck,hoping for a quick referral for you x

 

[caseysmummy11]

Hi kitty. I myself don't suffer with pcos but I watch a couple from America on you tube called ellie and Jared who struggled to conceive as ellie had pcos (it took a long time for them to geta diagnosis of pcos) they went to a fertility clinic and within a few months conceived a little boy who they later named Jackson and he's just turned one and she is currently 20 weeks pregnajtwitha second baby boy who she conceived naturally. I know they're in America and there journey will be slightly different from yours but I would check out their videos on YouTube, as they vlogged their ttc journey and it has a really positive ending xzz

 

[wishuponastar]

Hi, I have pcos and I ov some months but not every month and opks showed sometimes 3 surges a month so I gave up on them. While my dd took 2 year to conceive, I just got my bfp today after only 9 months! I had a bleed from a ruptured cyst a couple of months ago and in a strange way I feel like that helped. Anyway, all is not lost, good luck. Xx

 

[Lyllian]

I have pros and severe endometriosis. I shouldnt have been able to conceive naturally but got coil removed end of October and was pregnant by last February!so there is hope, my lo has been a fighter from the very start

 

[Lyllian]

Also I didn't know the miscarriage risk was meant to be higher...hmmmmm..glad no one told me!

 

[Louise2013]

Hello love, I have the opposite experience in that I have PCOS but every GP/doctor I have had has always been quite clear that it isn't something to worry about until it 'is', if that makes sense. Most women with PCOS ovulate and conceive without assistance, the misleading stat that is often quoted is that PCOS is a leading cause of infertility. Yes, this is correct, but there are a far greater number of women with PCOS who do not have fertility issues than there are that do, so it is a bit of a scaremongered issue in many ways. For example, 10% of women have PCOS, so you will know lots of women that do, but far less then 10% of women have trouble conceiving naturally (93% of couples would conceive naturally within three years of trying without assistance). I appreciate that may not be a comfort if you are facing issues conceiving, but I wanted to just shed a little light on the facts that PCOS is not a scary thing and is, in most cases, very very manageable.

Also, during my last pregnancy I was advised the miscarriage rate is not actually higher with PCOS. This is old information and recent research has disproved this so try not to worry. Miscarriage is sadly very common (I have had two) but is no more prevalent due to PCOS than in women that do not have it (I was advised this by Verity, the PCOS support group and also by a consultant I saw privately prior to trying for a baby). I have been lucky PCOS aside, as we conceived our son on our first month and have now had a surprise BFP for our second (not intended to sound like a brag, more a story of hope for you!). I am keeping everything crossed for this little one.

I am lucky that PCOS affects my cycles by lengthening them rather than not ovulating at all, which is the main challenge in women who have PCOS that affects fertility, but don't despair! The great news is that for many, if not most, women with PCOS ovulayion can be kick started with drugs such as Clomid, or you may even be offered a diabetes-drug called metformin to help manage insulin levels which in turn balances hormones and helps you to ovulate.

I don't intend to sound Blaise. For many women, many women who use these forums especially, PCOS can be hugely challenging, but also do bear in mind that that is often why forums have such an active community of people in the same position.

The main thing I would advocate as someone who has PCOS is to eat well, exercise, and keep your weight down. For me, if I lose even a few pounds my cycle lengths shorten, and my other symptoms lessen (the dreaded bloody chin hair.......arrggghhhh!!!) and healthy living when it comes to conception can only be a good thing right?! . Take a multivitamin and make sure you get a good iron rich diet. I appreciate exercise may be difficult with CFS but just a little bit of walking every day can help, and might also help the depression (I had a bit of PND and exercise really helped )

Sorry if I sound preachy or dull or blaise. Not my intention. I just wanted to let you know the odds are all in your favour hun! So don't despair, and if you need to chat or ask any questions, feel free to PM me . Big hugs and keeping everything crossed for you! xxxxxxx

 

[Louise2013]

Oooh, I also wanted to add that, the great news is you actually have a diagnosis. PCOS is one of the few medical conditions where you can actually do a huge amount to help yourself. When it comes to issues of the 'female' sort, personally, I would much rather have PCOS, a condition I am able to take action towards and make lifestyle changes to help improve how it affects me, than a condition such as say, endometriosis, for which (and apologies If I am incorrect here, my knowledge is limited) a person is largely at the mercy of medicine for assistance. I mean no offence to anyone affected by conditions such as endometriosis if it reads like that, I just mean that PCOS is very VERY 'self-helpable.'

It can be exceptionally empowering, now having a diagnosis, to take action towards helping yourself, and, whilst not everyone has great success, these things can go a long way to helping manage PCOS to almost 'invisible' levels. Every time you notice improvements you feel encouraged to continue and work harder and things just get better and better, but you need willpower, determination and a lot of positivity. Many people, and this may sound controversial, find PCOS is easy to 'blame' for many things; being overweight, lacking periods, hirsutism, but, for many women, much of this can be reversed and controlled by making changes to how life is lived. For example, I used to think I was a little bit overweight (and it was only just a little bit, but with PCOS a little bit makes a huge differences!) because of PCOS. The opposite is true, my PCOS was worse BECAUSE I was overweight; I eventually stopped kidding myself and realised that a woman with PCOS still has the same daily calorie allowance as a non-PCOSer, but certain foods were just not as appropriate for me as others. This was in my teens (now in my thirties) and once I lost weight, just half a stone even, I saw my irregular periods settle I to a familiar pattern of about a 35day cycle. My skin improved dramatically and I didn't suffer as much with minging facial hair that, although not really noticeable to anyone else, I was horribly aware of!

I'd recommend reading books by Colette Harris who herself has PCOS and had pulled together a huge amount of resources regarding diet, vitamins and all other manner of lifestyle changes a person can make to improve the ways in which PCOS affects them. I also found a book called 'taking charge of your fertility' by Toni Weschler helpful after I was diagnosed and googled myself into a panic (I had a version of the book many many years ago, about 1999 I think, but the book has been improved and updated since then!).

Good luck! Xxxxx