Advice you would have given others - PCOS UK (Verity)

PCOS UK (Verity)

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Advice you would have given others

cjp1985 profile image
6 Replies

Hi all. 

Just found this site which so far has been very useful! I have recently had an ultrasound which the person taking it has said that it looks like i have cysts on my ovaries. I'm seeing my doctor on Thursday in relation to this but was fobbed off by another GP years ago in relation to this. 

Anyone got any tips or questions you would have asked or anything i should be asking for etc when i see my GP as i want to be prepared!

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cjp1985 profile image
cjp1985
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6 Replies
Smummy2013 profile image
Smummy2013

I was in your position 4 years ago, to find one doctor that listened theb was moved ever since I keep being fobbed off, it's like it's not a real medical condition. I am writing a blog about PCOS for my degree. Have a look it will give you an idea what you may be facing. Hopefully you find a doctor that will listen.

lifewithpcos1.blogspot.co.uk 

OakTreeBlossom profile image
OakTreeBlossom

What a clever person you are!  I wish I'd done this years ago!  And I'm so sorry I didn't see this 'til now, how did your GP app go?

Cysts on your ovaries can be 'one of those things' or a direct result of regular, messed up hormones.  That's what PCOS is 'incorrect firing of hormones in an unpredictable but regular pattern'.  So your hormones messed up and created cysts, but if they keep messing up then there's the case for PCOS.  We don't need to keep doing ultrasounds to watch for the cysts appearing, we watch the hormone levels.  So I hope that in your app you got yourself some blood tests.  I have made myself a nuisance over the years asking for blood tests over and over again.  But through this I have learnt what my particular symptoms are and what I'd like to address.

Other PCOS symtoms are overweight, facial hair, acne, difficulty getting pregnant, abdomen pain, irregular periods - do you have any of these?

cjp1985 profile image
cjp1985 in reply to OakTreeBlossom

Hey thanks for your response. Yes I pushed for blood tests. The doctor agreed even without the blood tests that I have pcos and wasn't going to do bloods until I pushed for them. I was like how do we know if things are getting better or worse without a baseline!!!! She's told me to do them on day 21 so they are next week. I'm going to ask for s copy so I can research it all. 

All I got told was to lose weight which I have about 1-2 stone to lose (I'm currently 12.7) and size 12-14. Yes I have facial hair, yes to overweight, acne and facial hair has got worse since coming of Yasmin. Yes to abdo pain always mostly on the left hand side for about a week or  before period periods are anywhere between 28-40 days as I track then. I'm not trying to get pregnant (in fact the opposite) despite being 30. Any tips? 

OakTreeBlossom profile image
OakTreeBlossom in reply to cjp1985

Well done you!  You sound like you're on top of things, I too wanted to know what it all meant and meant for me.  I find the actual readings of blood tests hard to understand but armed with them I can ask the right questions so they become intelligable to me.

I was trying to lose weight to have a baby and found a gluten-free diet made me shed a lot of weight and keep it off.  I've also trialed 'metformin' at different points in my life.  I'm back on it again now as my 'insulin resistence' levels are high.  It doesn't help me lose weight though which is what some drs prescribe it for, I find it just makes me break down fat/sugar coming into my body easier so I'm not holding on to it (our bodies act like their in starvation mode when we have insulin resistence).

My latest trial is a low sugar diet and this has had an immediate and direct effect on my facial hair.  I would thoroughly recommend it.  Get knowledegable about food labels, it's quite a ride! I now cut out all refined sugar and it's substitutes (e.g. no sweetners etc) and at my last consultant appointment he was extremely happy with my changes, my testosterone levels have come down in direct correlation to managing the insulin in my body.  Does this make sense?  PCOS = insulin retention (i.e. not able to break down sugar and just over producing insulin) = fat storage = over active testosterone; to put it too simply!

The contraceptive pill can help a lot of symptoms.  There's combined contraceptive pills (which delivers oestrogen and progesterone) and POP pills (which provide just progesterone), both effective birth control but the former produces periods (and I found aided weight gain) and the latter just keeps your womb healthy (we have to be careful of ovarian cancer and osteoporosis).

Finally, I'd advise you take a look at your symptoms and decide what you want to manage first.  The facial hair is my priority for example.  I take a cream called Vaniqa twice a day and it's brilliant at blocking the hair follicals, but it's an expensive product only available on the NHS so you might have to fight for it.  When you get your results you can research what the effects are and try to manage your levels, it can be a detective case following the symptoms though.  I knew I had to tackle the testosterone for my facial hair but no one told me that managing my sugar could do that.  Please do ask more questions as they come up!

Best of luck.

x

romaluna2015 profile image
romaluna2015 in reply to cjp1985

hello. i have had quite a strange journey to get to the point of my fertility .. first i went to my new gp as like you had been fobbed off for so long, then when i finally plucked up the courage to go to my new gp was sent for a scan which ended up internal :0 which i wasn't too sure of having. then i was told i wouldn't have children at all ... so had bloods done.. then told i could... then told that i needed chlomid.. now waiting on surgery..  keep pushing for answers xx

Krystyna15 profile image
Krystyna15

I didn't have periods for like 4 years and (wasn't pregnant) so went to see my doc who did an ultrasound and bloods... Make sure they do bloods as this is sooo important to check your hormone levels!

PCOS in bloods normally shows that the LH hormone is sufficiently higher than the FSH hormone.

My last bloods were LH 19.7 and FSH 7.9 (I think)

LH lives in the back of your head in your pituitary gland and FSH lives in your ovaries and is what makes your eggs ready for release every month.

I kinda think of it as LH is stop, FSH is go.. PCOS is tooooo much stop and not enough go!

Hope that helps

Xxx

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