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PCOS - need a little hand hold!

(12 Posts)
MessyHouse91 Tue 31-Oct-17 13:26:27

I had a doctors appointment this morning after blood tests and an ultrasound to confirm that I have PCOS. I’ve been overweight since I was a teenager and always had very irregular periods, and more recently have been struggling with sudden weight gain, adult acne and facial hair, so I was expecting the diagnosis.

The doctor wasn’t particularly sympathetic or helpful (not a doctor bashing thread, I know they do a great job in often difficult circumstances). He just said nothing can be done, and asked what symptoms are bothering me the most. I replied my weight, and after running through my diet (I’ve done every diet in the book) he simply prescribed me a fat binder, which I’m very reluctant to take. He didn’t explain to me why weight is likely an issue, or what pills he was prescribing. Then he sent me on my way. I asked if I should see a specialist and he said that there isn’t anything that can be done and they’ll just treat symptoms.

I’m feeling more and more upset as the day goes on. I explained that I was going to start TTC after Christmas (I will finish an important three year long qualification in the Spring). He was completely unsympathetic, and said that we’ll deal with that when we get to it and he wouldn’t address my fertility at all at this point. I asked what it is on my blood tests which confirm the PCOS and he wouldn’t take the time to explain to me.

Everybody on these threads seems to know so much! I don’t know anything about FSH or LH or how I’d go about finding out what mine are - I feel overloaded with information and increasingly angry with myself that I didn’t insist the doctor took some time with me to explain.

Those who have been through this - where do I start to understand what’s going on?

physicskate Tue 31-Oct-17 14:04:48

Ok, so I have been having fertility 'issues' and have recently been diagnosed as either pco or pcos. So I've been getting on Dr Google... a lot.

PCOS is an endocrine disorder, which means it messes with hormones. One of the hormones that troubles about 80% of people with PCOS is insulin. Namely, too much of it in the blood stream, which lowers your metabolism. It also means you don't process sugar/ carbs very well. So here is my two pence: low GI diet (no sugar and very low carb, think the south beach diet?). Myo inosotol. It's a dietary supplement (I take it as inofolic which is inosotol and folic acid). It's expensive, but you take two sachets a day. I have lost weight with it unintentionally.

You might consider asking your doctor about metformin which can help regulate periods, reduce blood insulin, but sometimes comes with nasty side-effects.

A place to start on your research:
www.pcosaa.org/symptoms

Knowledge is power. This is an area that not every doctor has a lot of experience with or training about...

With fertility, I have often found I very much have to be my own advocate.

Also I'd say it's great that you've found out sooner, rather than later, as no, there isn't a cure, but there is quite a bit you can do to improve this condition. And it's not just about fertility, as there are a few other long term health risks that it would be a good idea to get in front of anyway.

LG93 Tue 31-Oct-17 15:29:17

Firstly, sympathies that your doctor wasn't very helpful or sympathetic. I would suggest you maybe try and have a chat with another GP if possible, and ask about metformin.

I was told I likely had PCOS from about 17, and it was eventually diagnosed properly at 19 as contraceptive pill had stopped blood tests being performed any earlier.

@physicskate has given some useful information. It's a hormone disorder, in which androgen levels ('male' hormones) are higher than they should be. This causes symptoms such as the hair growth and acne that are typical of pcos.

As Kate said insulin resistance is another issue to consider. The more resistant you become, the more insulin you produce. Insulin encourages your ovaries to release androgens and so the increased levels make the pcos worse.

There is a diet called the 'pcos diet' which you could google to give you some ideas regarding reducing the insulin resistance on your own. Insulin spikes and high levels of insulin also make it harder to lose weight. Metformin helps increase your sensitivity to insulin and therefore can reduce your insulin levels, which helps with the levels of androgens released by your ovaries.

While the doctor didn't word it particularly well, he's technically right in that nothing can be done to 'fix' pcos, it's all about treating and reducing symptoms to manageable levels to minimise their impact. Losing weight while difficult does have a huge impact. I've still got a way to go but reducing my bmi from 35 to 30 really helped improve my skin etc and the more you lose the easier it is to lose more. I find looking up glycemic index and load (in similar way to diabetics) helps my weight loss more than calorie counting alone, and it's not all about avoiding carbs completely, e.g. Your body will cope with carbs best if paired with a healthy fat, so granary bread with a nut butter or avocado will cause less of an insulin spike than the same bread with marmite for example, despite being higher calorie. It's a steep learning curve but there are some good resources out there. Avoid 'white' carbs and opt for wholegrain rice, pasta etc and try and avoid eating carbs on their own - better paired as mentioned above.

In terms of fertility my gp (a fertility specialist) seems optimistic that while it may be tricky it's not impossible. I've been ttc since June and am trying to be zen about the whole situation and focusing on losing as much weight as i can so that I'm in the best health for when I do fall pregnant.

Big hugs and hand holds - let me know if you've got any more questions and I'll try to help xx

WeeM Tue 31-Oct-17 15:44:02

I was finally diagnosed with pcos about 10 years ago maybe after always having been told by the gp that’s ‘probably’ what it was. I had an ultrasound as well which confirmed there were a lot of cysts there. However they also said there was nothing really that could be done and the only thing I ever really remember being offered was metformin when I expressed an interest in conceiving.
After trying to conceive unsuccessfully for a year we were referred to fertility consultants to discuss various options. However we didn’t pursue it at that time for various reasons and just decided if it happens it happens. To our surprise it eventually did happen after 4 years so don’t lose faith!
I have never been advised by the gp to consider diet options relating to insulin etc so it’s all very interesting reading it here. I’m slightly overweight and find the only real way for me to make a dent in trying to lose weight is cutting out carbs...but of course that’s only a short term fix and I don’t find it a sustainable way of life.
Perhaps it would be worth speaking to another gp and discussing more in depth about how different foods may affect your body...I think I would def benefit from that.

I think it can be hard as it’s seen that there’s nothing really ‘wrong’ with you therefore there’s not much they will do unless you push them for it.

flowers

Pickle0 Tue 31-Oct-17 18:45:12

FOLLOWING!

I was on the pill for about 5 years and then stopped taking it about 3 years ago and periods had been irregular since. I went to see my GP after going 4 months without one & over the next few months she sent me for lots of blood tests and then finally an abdominal & transvaginal scan which together confirmed PCOS. She knew from the very first appt that we were TTC, so after PCOS was confirmed she put me on metformin to should help regulate my periods. I have been taking for almost 2 weeks now with no sign of AF, but have heard lots of metformin success stories so I am willing to give it a good go!! I will be going back to my GP in 6 months if no luck.

Sorry to hear that your GP hasn't been much help but I agree that everyone has answers on here from their own experiences, and it's really helped me so I am happy to share my experiences too. I'd be happy to be friends smile and answer anything I can along the way.

peachesarenom Tue 31-Oct-17 21:16:24

I'm taking metformin and inofolic nom! I have noticed an increase in cervical mucus,*@physicskate* have you?

physicskate Tue 31-Oct-17 21:26:01

Oh maybe that explains what’s going on!! I normally don’t go dry before af but this is a bit ridic!!!

I’ve heard clomid can dry you out too but I didn’t notice that during fw. Maybe inofolic??

MessyHouse91 Tue 31-Oct-17 21:45:11

Thanks for your messages everyone! I’ll have a look at the PCOS diet and the inofolic! Guess I’m just a little lost on these boards and a bit shaken by how my GP talked about it. I think I’ll definitely try and speak to a different GP and get a proper plan in place! Thank you!

Ta1kinPeece Tue 31-Oct-17 21:50:13

I saw this thread on the active list ....

For the last 5 years I've been a user and advocate of 5:2 intermittent fasting
one of its side effects
- other than weight loss
the true goal of fasting is blood chemistry balance, not weight loss
is a massive reduction in PCOS symptoms for those who have it

with the surreal side effect of several PCOS pregnancies on the threads over the years.

If you have PCOS, please look seriously at "fasting"
its a very different way of eating than you may be used to
but it doe seem to reduce pain, reduce bloating and increase fertility

peachesarenom Tue 31-Oct-17 22:01:30

I've noticed an increase Kate!

Millypad Wed 01-Nov-17 09:21:36

It sucks, doesn’t it? I’m sorry you’re going through this. There are some great recipe books for pcos diets - since going on it a month ago I’ve lost 8lbs and started to see a difference in my temperature (I temp every morning and it’s really helped - my mum has pcos too and conceived me this way.) I would also recommend Jillian Michaels’ exercise dvd as she has pcos too and her workouts really help. Best of luck, it seems scary but I promise you you can take control.

Millypad Wed 01-Nov-17 09:23:30

OH! And drink raspberry leaf tea up until you ovulate. It’s been a godsend

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