left doctors in tears-feel humiliated and more anxious than ever. looking for some info/advice on pcos

[violeteyes]

will try not to be too long!
brief background, have history of irregular, heavy periods, am obese and finding increasingly difficult to shift the weight.
after a very bad year with having to have periods induced and tests showing little/no progesterone i actually fell unexpectedly pregnant. was told that symptoms could be either pcos or pituitary gland prior to baby, but that baby means can't be pituitary gland.
have since moved, and as son now 13months and weight gain beginning again have been trying to get diagnosis and help. am still breastfeeding x2 daily, about to start ttc.

have now seen 2 gps at surgery-told can't do anything while feeding and ttc-very wierd about 'still' breastfeeding, ttc while breastfeeding. basically told me no point in diagnosis until after pregnancy, would be waste of time seeing a gyne and sneeringly tripped up into 'o, is this just a weight issue'.

sorry for going on, but just don't know what to do. am worried about my weight, painful cycle, long term health, fertility etc but feel am at dead end

Sorry as no personal experience but my BF just diagnosed with PCOS after years of your symptoms (which sound bluddy horrid for you) and she said her doc said the weight gain / inability to lose is totally due to the PCOS. So don't let crappy doc fob you off. Sadly BF's doc said only real help comes from going on pill or hysterectomy. Neither of which any good at all for you obviously...

If you are in London and can afford it, go and see Prof Farid at the London Endocrine Clinic

here

He is excellent on PCOS, thyroid and other issues.

thank you for reading sparkletastic-yes i seem to be being pushed to pill.at least no mention of hysterectomy-yet. hope your friend gets more help.

am off out for day now, will be back this eve

I'm not sure I've made exact sense of your post but here goes....

From my experience people suffering from pcos usually find it difficult (if not impossible) to fall pregnant so I would doubt this is your problem. Has anyone actually diagnosed you with it? They may have been able to pick up any cists on a scan.

It is also unusual (I think I'm right in saying this) to fall pregnant whilst you are still bf'ing so perhaps that is why your GP feels is it odd that you are bf'ing and ttc. Periods can also be affected by bf'ing. They often don't return until after you have stopped or reduced.

I know it is stressful when you have health issues and feel like you are not getting anywhere but perhaps you should try and calm down a little. Getting stressed is probably going to make things worse.

Have you tried alternative treetments? Try doing some research online with your symptoms.

I have pcos too. Can you put off ttc again and try to get a proper diagnosis first - laparoscopy/Hysteroscopy. Obviously they wouldn't do an investigation if there was a chance you could be pg so ttc would be a problem.
Maybe you could ttc for 6 months and if it doesn't happen then stop and try to get your health in order before trying again.

i really don't see why it was be waste going to se a gynae. go and see another doctor adn try and be really assertive. i am ridiculously unassertive at the doctors for some reason so i really sympathise.

and if the doctor mentions your weight instead of feeling humiliated just state firmly that it is probably a symtom.

hysterectomy will do NOTHING WHATSOEVER for PCOS (sorry for shouting!) - it's basically a hormone imbalance and the ovary thing is a symptom of the imbalance, not a cause. The pill will mask the symptoms, but (sorry for this , the only thing which helps long-term is losing weight through sensible diet and moderate excercise. Ovulation can be kick-started fairly easily, but probably not advised while bf (Clomid, etc).
Try Verity for more info and a discussion board (not that MN isn't the best ever discussion board , but sometimes a specialised one is more useful)
TBH I owuld say you'll need to consider the bf side of things - if your cycles are affected by PCOS anyway, then adding in the disruption from bf, and ttc will be mcuh much harder.
Ther are long-term health implications with PCOS if it's not controlled (again diet and excercise ), but short-term, if you want another DC, then push for a referral to a gynaecologist; if you want to deal with the PCOS, then ask for an endocrinologist. Stand your ground with GPs - a lot of them don't know what they're talking about - and if you find a good one, then keep hold!
What area are you in? I might know of a good endo or gynae (am indirectly involved in education of the medical profession re PCOS and have some contacts)

thanks again all! mumsnet very helpful once again. have ordered books by colette harris and will take diet/exercise firmly in hand, have been doing but bit half and half if honest with self. will join verity too. am in brighton and hove - now very anxious about gp but have been for blood test to check for diabetes-for nth time in life as have had raging thirst thing since childhood, people always commenting on it! another reason to worry about long term effects....

Hi Violet

I too have PCOS but managed to conceive. When I was post-partum I had an overactive thyroid and my weight literally fell off but since it has all piled back on and I am now going to SW but can't seem to shift anything, get's you down doesn't it.

I finally saw a sympathetic doctor who started me on Metformin (it's actually for diabetes and she went into how it works for PCOS). It suppressed my appetite and I did lose weight but it made me very dizzy and my GP thought I best come off it.

Now all anyone ever tells me is the only thing to control it is weightloss!!

It's a viscous circle isn't it. PCOS makes you put weight on but the only thing to relieve the symptoms is losing weight.

I long for a wonderdrug! Good luck!

Big study a couple of years back showed that metformin by itself did nothing for weight loss/symptom control (unless like me you had horrible side effects and loads of excess weight went straight down the loo , but it can help weight to shift when combined with diet and exercise . Top experts are in complete disagreement though as to whether metformin should be given routinely or not - I heard two of them ever-so-politely telling each other they were wrong at a conference, where each of them had doen studies which had shown they were right .
There's unlikely to be a wonder drug (certainly in the near future) as they haven't worked out the cause yet, and as everyone presents with a different package of symptoms (and what works for one thing, works against another i.e. Dianette can help with acne, but doesn't domuch for getting pregnant ), it's not likely a one-size-fits-all drug will appear.

been on verity (though had to dodge the tickers lol)and seems that i am not mad to want a diagnosis despitr ttc/breastfeeding etc. as thisv site shows so well it is perfectly poss to do both as well!
it seems that it may be possible to have metaformin if apropriate, and indeed should help with ttc so don't know what gp meant about nothing they can do. would also like to see a dietician if possible. will try to assimilate information, bring someone with me and persevere

violet eyes, from a pituitary point of view, they are talking shit, you CAN have a baby with pituitary problems. I know that because my mum had ME!!! She had a condition called cushings disease which i would presume that is what they were suggesting for you. XS weight, thirst, similar symptoms to PCOS, surely PCOS would be easily ruled out with a scan. I cannot believe they just dont send you for a scan. They told my mum she would never concieve, um, what am i then, scotch mist???

I do think it would be worth them testing your steriod levels as well as pituitary hormones. The fact you have had the thirst issue is a factor here. Dont worry its treatable.

Sympathies - I too am overweight and know how hard it is to lose weight. Although I don't have PCOS. However I used to use a diet website and they really recommended low-carb for PCOS. Might be worth trying to see it if helps.

Hi violeteyes

I have PCOS and I would agree wholeheartedly with the comments made by Shrinking Violet and EmmaJW.

Think you've been fobbed off by ignorant GPs - many GPs are infact not up to date knowledge wise when it comes to PCOS.

Do contact Verity - they are very good and can send information to you (when the post office start working again). They also have a web address - its www.verity-pcos.org.uk.
Would recommend them to any PCOSer.

PCOS is a very individualistic disorder and affects each woman with it very differently. The causes of PCOS are not fully understood but genetic factors seem to be implimented (it seems to pass down the male side of the family).

If your periods are heavy as well then it is important that the underlying cause is established - fibroids for instance can cause heavy bleeding.

PCOS is not a condition that should be messed around with by GPs - it often requires gynae assistance to treat. There is no cure for PCOS but the symptoms can be managed.

Sparkletastic

Cannot believe that your BF's doc said either pill or hyst for PCOS . Another crappy doc, hope your friend has sought a second opinion. Unbelieveable, particularly with regards to PCOS as it will do nothing for the condition.

Low carb is not a good idea for PCOSers to follow long term as it is not sustainable. Low GI/GL is a better eating plan for PCOSers.

Low GI diet worked for me - felt so much better and fell pregnant! Have had 2 babies now and have friends with PCOS who have also got pg when following a low GI diet - having said that - I still find it difficult to follow unless I'm ttc .

Oh thanks Attila - will tell BF as she was v shocked that these were presented as her only options. Seems most docs totally rubbish on PCOS and yet it is fairly widespread amongst women I know...

i in 5 have PCO (the condition with out the symptoms), 1 in 10 have PCOS, and in certain ethnic groups it's much higher, up to 1 in 2

Yes - forgot the low gi one - also good and much healthier and great for long term energy.

Atilla-hereditary wise could I pass the pcos on to my dd ?You said it runs from the male side .