newly diagnosed- very confused

tennille · 04-04-2004, 01:34 AM

hiya,

I'm new here (obviously). I'm Tennille, i'm 27, married to Paul (29), living in Newcastle Australia.

I've just had my pcos diagnosis confirmed (although my gp was fairly sure), also have insulin resistance.

Really, I'm not sure what I'm looking for from this forum, information? support? understanding?

I'm actually feeling quite alone and uninformed at the moment. The specialist I saw on Friday (who confirmed diagnosis), is apparently brilliant, but all I saw was a Doctor who talked to my husband not me and assumed that I'd read "all about this pcos stuff on the internet"

He did however, give me a prescription for Metformin (1500mg daily) and offer me one for Clomid. Initially I said no to the Clomid but on getting home realised that if I wanted the Clomid later it was going to cost me $180- consult fee- to get the script. Needless to say, I rang up and he's sending me the Clomid script. I'll just hold onto it and get it if/when I need/want it.

I discovered my pcos after going off my pill in early December 2003 (to start trying for a baby) and having no period for months, my gp (who is a superstar) was quick to realise what was going on and ran lots of tests.

Anyway, as I said, I'm feeling really uninformed, I don't know what questions to ask. More specifically, I don't know where to start.

I've been lumped with all this information and none of it makes sense to me. I've been told to: "go home, eat less, lose weight, do an hour of aerobic exercise a day and take the metformin- then wait and see".

I was also told that I was "within a whisker" of type II diabetes based on my insulin resistance (however, this comment was in direct contrast to what my gp told me)

I don't know about anyone else, but this is alot to take in. I'm now terrified that I'll never have a baby, will end up with type II diabetes etc and it'll be all my fault because I didn't do the right things.

The specialist told me to "see a dietician" however, finances for us just don't allow for me to do that sort of thing, even seeing the specialist was a blow money wise. I can't do an hours exercise a day, even I know that. I need to lose 45 kilos (a scary amount) and feel like it's all hopeless.

Advise, info, help!!

Serene Tamborine Mummy · 04-04-2004, 07:32 AM

Hi Tennille, You poor thing, you sound like you feel just like I felt when I was first diagnosed (April 2000). Only my doctor said to me " You have Poly Cystic Ovarian Syndrome, the side effects are infertility ofcourse" . Everything she said after that went in one ear and out the other - stupid cow! So I left the doctors surgery and went straight to work (pharmacy) and did printouts and took books home and read and read. Then I got on the computer and looked up as much info as I could. I felt much better after this - it is not all doom and gloom.

I eventually found a fantastic doctor who put my mind at ease and was quite pissed off with the other diagnosing doctor (which made me feel better ofcourse) and told me that the statistics were on my side! I eventually went off to a specialist in November 2001 and he started out just trying to regulate my body before trying to conceive. Then I ended up on Clomid, which worked (25mg dose), so I was taking this every second cycle. On my very last lot of tablets I conceived. We now have a fantastically beautiful baby boy Mackenzie (see photo attached). While I was preggers, I got Gestational Diabetes. It was diet controlled thankfully so I didn't have to use insulin. I found the Diabetes Australia website helpful. Probably something like www.diabetesaustralia.com.au or something like that. I got quite a bit of 'Low GI' info off this. It worked for me. The diabetses specialist I saw whilst pregnant is going to put me on Metformin when we try for number 2. He said PCOS women who take Metformin have a 50% chance of ovulating on their own and that increases to an 85% chance when taken with Clomid. On this website there is also low carb info which is supposed to be excellent so have a wade through all the info here too. I wish you the best of luck - It doesn't have to be as bad as it first sounds.

Tas · 04-04-2004, 10:30 AM

Hi Tenille and welcome to Soul Cysters.

...I'm not sure what I'm looking for from this forum, information? support? understanding?...

You've certainly come to the right place. There are heaps of articles you can read and lot's of discussion lists - diet and exercise, alternative remedies and all sorts of other great stuff.

...I'm actually feeling quite alone and uninformed at the moment. The specialist I saw on Friday (who confirmed diagnosis), is apparently brilliant, but all I saw was a Doctor who talked to my husband not me and assumed that I'd read "all about this pcos stuff on the internet" ...I've been told to: "go home, eat less, lose weight, do an hour of aerobic exercise a day and take the metformin- then wait and see"...

I'd be telling him in no uncertain terms that I have PCOS - not my husband. Most of us with PCOS/IR can't just 'eat less, lose weight'. It doesn't work that way. The amount does come into it, but it's more about what you eat.

He did however, give me a prescription for Metformin (1500mg daily) and offer me one for Clomid ... I discovered my pcos after going off my pill in early December 2003 (to start trying for a baby) and having no period for months,

I'm surprised that he gave you the Clomid so soon. When I had trouble conceiving #2 (13-14 years ago) my ob/gyn said you had to have been trying unsuccessfully for 12 months before you were considered infertile (and therefore in need of help). It can often take a few months to get a regular cycle after going off the pill.

... the Clomid script. I'll just hold onto it and get it if/when I need/want it...

How about natural therapies? Many people are able to control their symptoms and even conceive using diet and exercise and herbs, etc. I'm not trying to conceive (ttc), but I have been able to get regular and ovulating again without meds, after years of undiagnosed PCOS.

Anyway, as I said, I'm feeling really uninformed, I don't know what questions to ask. More specifically, I don't know where to start. ... I've been lumped with all this information and none of it makes sense to me.

It is a huge learning curve to start with, but stick around and all will be revealed

I was also told that I was "within a whisker" of type II diabetes based on my insulin resistance

Insulin resistance is a pre-cursor of diabetes, but celebrate - you caught it before it developed so it should be easier to treat it now than when it has turned into diabetes.

...I'm now terrified that I'll never have a baby, will end up with type II diabetes etc and it'll be all my fault because I didn't do the right things.

Stick around here and learn all you can. Before you know it you'll have your blood-sugar/insulin under control and probably be running around after a whole bunch of kids. And believe me - you'll need your blood-sugar/insulin under control to keep up with them.

The specialist told me to "see a dietician" however, finances for us just don't allow for me to do that sort of thing, even seeing the specialist was a blow money wise.

Can you see one at your local hospital so it will be covered by Medicare?

Personally, I'd see a nutritionist/naturopath. They're more concerned with treating the causes rather than just the symptoms.

I can't do an hours exercise a day, even I know that.

Can you do 10 minutes? Start with however little you can do and add 1 minute per day or some other small increment. It can be hard at first, but soon it gets more enjoyable and you even look forward to doing it. Walking is great to start with.

I need to lose 45 kilos (a scary amount) and feel like it's all hopeless.

They say that losing as little as 5-10% of your excess weight can be enough to get you ovulating. The diet and exercise list is really helpful.

I'd better go now. This has taken forever to write because I can't see straight :o It's only 10.30 but I've had a busy day.

Hang in there cyster.

tennille · 04-05-2004, 09:59 AM

More than anything, I just want to thank both of you Donna and Tas for your replies.

They at least made me feel less alone.

I rang diabetes Australia today and they're sending me a whole lot of information about pcos and insulin resistance AND (better still) they've put me in touch with the Diabetes education people up here, I've called them and they were lovely. Not dismissive or arrogant like the specialist, but understanding and encouraging.

I've managed to book an appointment with a dietician (though them) who I see 19 April.

Apart from that, I think I'm just processing all this in degrees really. I'm still just getting my head around the fact that getting pregnant won't be the walk in the part we thought it would be (lordie does that sound self-obsessed or what!).

I suffer from anxiety/panic and sometimes depression, and from what I'm reading these can also be linked to pcos. Steep learning curve this one.

Anyway, thank you for your messages and support they really did keep my on the right side of sane this weekend.

Eva37 · 04-05-2004, 11:58 AM

Hi

WElcome to soul cysters

Eva

Serene Tamborine Mummy · 04-06-2004, 08:35 AM

Something else I forgot to write in my reply, was when I found out I had PCOS, I gave myself a week to cry and wallow in self pitty. I felt I had every right to do this, as to me, it was devistating being told I may not be able to have children. It was my life long dream to be a mummy. That week was well deserved as far as I was concerned. After that I did heaps of research and felt much better about the whole thing the more I found out. Have a good cry I say!

tennille · 04-06-2004, 09:39 AM

Quote:

Originally posted by Donna Allan
Something else I forgot to write in my reply, was when I found out I had PCOS, I gave myself a week to cry and wallow in self pitty. I felt I had every right to do this, as to me, it was devistating being told I may not be able to have children. It was my life long dream to be a mummy. That week was well deserved as far as I was concerned. After that I did heaps of research and felt much better about the whole thing the more I found out. Have a good cry I say!

I think you may well be right there. I was just saying to my hubby today that I think I really need to just have a big girly sook fest and a big cry and be done with it. Rather than this disconnected, blank feeling.

thanks Donna, I really appreciate this