Why do doctors not tell you about PCOS and miscarriage rates?

[sleonie]

I am more than a little frustrated...

I have had 2 MMC's and decided to do a bit of research on the web about how my PCOS may be affecting my ability to carry a baby.

It seems that having PCOS automatically places you at a higher risk of MC - (some website suggest up to 45%). There are many women discussing how they were receiving advice on how to reduce the risk by reducing their sugar and carbs intake during pregnancy, and by cleaning up their diet and exercise regime before trying to concieve.

I want to know why I have not been given ANY advice like this at all?

I hate living in the UK sometimes, it is like our medical system is stuck in the dark ages... Most of the women I have been reading about are in the states.

If you are a PCOS sufferer that has managed to concieve by changing your diet and lifestyle factors, i'd love to hear the story of how you managed it

I have little problem getting pregnant - my problem is staying pregnant - which after doing much reading seems to suggest a hormonal related problem.

I am wondering where i can go in the UK to get help with this?

I will be glad to recieve any advice or success stories!

 

[tennismom]

i have (had?) pcos and i have three kids now! get your prog. levels checked. a lot of women that have mc's have low prog (seems that women with pcos have low progestrone). i started spotting with my first pregnancy, but everything turned out okay. with my second and third i was placed on prog. supplements (oral and vaginal creme) for the first 12 weeks and then i got progestrone shots.
ask for progestrone!! it is a baby saving hormone!!!

 

[sleonie]

I think I am going to start to look into what I can do this time, rather than waiting for another MC before the NHS will kick in with their investigations.

I am already cleaning up my diet and will be starting an exercise regime as well - to try to reduce my BMI a few points and to control blood sugar/insulin levels.

 

[hollyw79]

sleonie~ I understand how you feel- even though I am in the US- it's pretty sad that you have read on a website about different things you can do and what MAY or MAY NOT help. I have learned SO much since I've been on here.. waaaaay more than any doctor has ever mentioned to me. I think we all need to be our own advocates honestly~ because no one cares about you and your family as much as you do. I agree about checking progesterone. Have you also thought about trying different supplements?

 

[sleonie]

Yes I am going to try a variety of things.

My first thing will be take the HCG Diet (once my HCG levels are back down to normal). This is a diet where you cut out the carbs as much as possible (responsible for insulin resistance) and you eat 'healthy' fats. I'm also going to increase my exercise levels a little - nothing too strenuous, but making sure I walk, jog and swim each week.

Once i have my BMI back in healthy levels, I think I will investigate what supplements (vitamins/minareals) are the best to take.

I have written to my local private fertility clinic to see what testing they can offer me and at what cost.

I've just bought 2 books from Amazon on PCOS - about it and the correct diet etc...

I am trying everything really!! You are right - none else seems to really care, so i need to understand as much as possible about why my body is behaving in this way.

I look back on my recent pregnancy now - and see already where I was making dietary mistakes (due to PCOS and insulin resistance). I was probably eating way too many carbs and I hadn't decreased my intake of sugar - infact i had probably increased it - as i was avoiding diet drinks - and drinking more fruit juice and sugary drinks. THAT WILL NOT BE HAPPENING AGAIN!

 

[iluvbump]

I have PCOS and Endometriosis... When i MC i asked if me having these conditions played a part in it they told me no! they said to me it only lessens your chances of conceiving!
When i was diagnosed with these they told me that eating low carb foods is better... no white bread, just wholemeal or ones with seeds... plenty fruit and veg.. avoid food with loads of sugar.. avoid eating loads of pasta and rice..
it is a VERY boring diet.. i have been on it since i was 15.. and i still MC...

I am shocked that if having PCOS played a part in my mc... because i was then basically lied to...

 

[sleonie]

iluvbump...

I know it is really sad that the doctors actually dont seem to care much about PCOS. The truth is that it is a cluster of different symptoms and problems that can effect different PCOS sufferers in different ways - so I think they struggle to know how to manage/treat it.

The statistic I needed to hear two months ago was this - that in a normal patient without PCOS the MC rate is around 14%, for women with PCOS, the MC rate is higher - up to 45%. That is what you can find out easily by searching on the internet.

I was well aware that actually getting pregnant may be a problem with PCOS, but was not aware that we also have a significantly higher MC rate.

I have also discovered after searching on the web that there are things we can do - to help reduce the risk of MC. Mainly these are diet and exercise related things.

Growing up with a Type 1 diabetic brother - i have a very good understanding of food science - which i am now going to apply to my own life - in an effort to get pregnant again and to STAY pregnant this time.

I am sorry that the doctors didnt tell you either...

 

[Rumpskin]

Hey sweety

Keep on researching and pushing your doctors to do something about it. I have been in and out of my doctors more in the past 3 years then in all my 39 years of living!! And they will see even more of me in future.

Have you got a good doctor?

Since my miscarriages, I have seen a wonderful lady doctor. I am seeing her next week to discuss further referral/tests. She even phoned me up this morning once having received notes from the hospital to say that I had miscarried again to see how I was.

Victoria Beckham, Jules Oliver and Louise Redknapp all have PCOS and have children now so maybe worth doing some research on them also?

This whole rollercoaster of a ride has made me even MORE so determined to see a pregnancy beyond 9 weeks and hopefully to 40 weeks.

I wish you all the best honeybunch and with you all the way xxx

 

[sleonie]

Thank you Rumpskin

I feel the same too - my determination is on the increase!

I will be going back to my GP shortly as well. I think I will ask to see a GP that has an interest in PCOS/fertility - hopefully they have one at my surgery.

 

[iluvbump]

iluvbump...

I know it is really sad that the doctors actually dont seem to care much about PCOS. The truth is that it is a cluster of different symptoms and problems that can effect different PCOS sufferers in different ways - so I think they struggle to know how to manage/treat it.

The statistic I needed to hear two months ago was this - that in a normal patient without PCOS the MC rate is around 14%, for women with PCOS, the MC rate is higher - up to 45%. That is what you can find out easily by searching on the internet.

I was well aware that actually getting pregnant may be a problem with PCOS, but was not aware that we also have a significantly higher MC rate.

I have also discovered after searching on the web that there are things we can do - to help reduce the risk of MC. Mainly these are diet and exercise related things.

Growing up with a Type 1 diabetic brother - i have a very good understanding of food science - which i am now going to apply to my own life - in an effort to get pregnant again and to STAY pregnant this time.

I am sorry that the doctors didnt tell you either...

I'm determined to conceive again... i know i need to lose weight despite the OH telling me he loves me how i am... i need to change... its just my tummy thats the prob...
i dont want another MC.
=[
xxxx

 

[sleonie]

iluvbump...

It's probably best to work out your BMI - have you tried doing that?

I'm at 27 at the moment which is 'overweight' but ideally it is best to be between 20-25.

 

[iluvbump]

im down as obese
=[

 

[sleonie]

When we are both feeling a bit stronger we can get out in the lovely spring sunshine and get walking and jogging - we can motivate each other!!!

I would look into the HCG Diet as well - it is what i am going to do. It seems like a crazy diet at first glance, but it is highly effective. My mum (who is a nurse and has checked out all the medical side of doing it) has just lost over 1 stone on it - without doing a bit of exercise! And she's not been hungry. You have to follow all the rules etc, but it really does work.

I am waiting until my HCG levels are back to normal to start the drops and to start the diet. I'm going to test with a HPT in about a week and a half's time just to check i'm back to normal - then I will start the diet. If you are interested I can PM you the details...

 

[iluvbump]

That would be great actually yeah
Thank you!

 

[tennismom]

this is what i've been told and from experience:

it is a good idea to eat healthy, lose some weight, if needed, etc. the reason is this - even if you just lose 10% of your body weight, you chances of ovulating are really good. the problem with mose people that have pcos is that many don't ovulate.

but as for mainting a healthy pregnancy, dont beat yourself up - b/c 9 times out of 10, diet doesn't cause a MC. it's more than likely the hormones. which, hormones ARE more balacned closer to your normal weight. so it's not so much the food, but rather eating healthy makes you lose weight. .when you lose weight your hormones rebalance, etc.

but, really check out progestrone. even if you can't get into a fertility doc, try to use some over the counter cream (use it after you ovulate) and don't stop using it until you know for sure you are not pregnant. if you are pregnant, keep using it!! if you're not, take a test to confirm and them stop using the cream (the cream will keep your period from coming even if you aren't pregnant).

best of luck!!

 

[sleonie]

Thank you Tennismum.

I will try and find out about OTC progesterone cream!

I have read that hormones can effect the quality of your eggs as well - which can lead to MC. So - losing a bit of weight and getting back to where I should be in terms of a BMI is likely to help in some way at least. I guess it is about trying to do everything I can now really!

I don't think I am one of those women that can keep putting myself through MC after MC, simply because I have experienced such horrible and difficult loss and grief in my life already. I think trying to get pregnant again without altering my body weight would be a little foolish really.

The reason I know diet works for me - is becuase about 3 years ago I did a low GI diet and lost about 1 1/2 stone. Although I wasnt trying to concieve then, the effect of the diet on my general health was amazing.

I was not tired anymore, i had energy, my periods regulated (and have remained regular eversince - on a 34 day cycle) my PMS reduced and i was 'just healthy'. I could feel my body working efficiently. So - there is more than enough evidence to suggest the benefits - and i love to eat healthy and exercise - i just need to get back into it!

 

[snuggles05]

I see it's been a while since any one posted on here. I was wondering how you are finding the diet? I am an American living in the UK and sadly wasn't diagnosed with PCOS (even though I took an article about it to my OBGYN in the States asking her to test me, but she just stated I didn't have it without testing me ) until I came here to the UK.

However, once diagnosed that was it, I didn't realize what PCOS meant to me just that I definitely had it. I knew some things like being overweight, extra hair, some infertility issues, etc. But not all the other things that go along with it. I wasn't down with my dr's solution to throw Birth Control Pills at it or other medicine, especially since I want to conceive. Then I stumbled across the book "The Ultimate PCOS Handbook:Loose weight, boost fertility, clear skin, and restore self esteem" by Colette Harris and Theresa Cheung. It has been such an eye opener. PCOS is an ongoing condition, there is no cure, and it does not go away. It is like pregnancy as in the fact that no one PCOS case is exactly the same, they can all vary. But there are ways to help control the symptoms. If you can it's well worth the £10 on amazon, at any rate, I wish you the best in your endeavours to have a baby. I myself am still trying to conceive, but if nothing else thanks to the book I am now on my way to being a healthier me.

 

[sashylu]

Did you ever manage to carry full term?

What did you do?

 

[sashylu]

Did you ever manage to carry full term?

What did you do?