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PCOS, any experience in dealing with this?

(8 Posts)
susurration Wed 07-Oct-15 18:47:07

After several years of fighting for tests, in January 2013 I was told by my GP that they thought I had PCOS. This was judged on my LH levels (possibly FSH, can't remember?) being lower than average and a scan which showed my right ovary to be covered in cysts. I also display lots of the other 'symptoms' like extra hair, overweight, irregular cycles (previously anywhere between 29 and 106 days).

We've been TTC since Feb. However, this current cycle is now approaching 130 days and so as you can imagine not much good TTC. I've done a dozen tests at various points, all BFN.

I asked the GP if I could be sent for more blood tests etc but he said he didn't think it was PCOS and to wait another 6 months before coming back for help. I'm 27yo so actually suppose i'm the age where they would expect me to wait two years rather than one for help. Nothing ever came of the original 'diagnosis', they didn't send me to see any specialists or anything much to my frustration.

Does anyone have any experience of this? either GP disagreeing with previous diagnosis, or extremely long irregular cycles. I don't really know where to go with this next and could do with some opinions. I'm getting so fed up. My close friend recently announced her pregnancy and I feel so sad about it (although thrilled for her!)

Andysgirl15 Wed 07-Oct-15 20:00:19

First off I'm sorry you are going through this but I can sort of relate. I was diagnosed with pcos at 16 confirmed by bloods and scan of my ovaries. When I got to 18 my ex and I started trying as we knew it might take a while. My gp was amazing and referred me straight away to a gynecologist as he knew I needed medication to help get pregnant so there was no point in trying for a year. The gynae made me get my bmi to below 30 (they wont help if your overweight) I had an hsg test (this is where they flush dye through fallopian tubes and womb to check for abnormalities and blockages) I also had bloods aswell, after all that I was prescribed clomid and conceived my daughter on the second month. So I think you need to go bk to your gp and push them into sending you to a gynecologist as u will get a more definitive answer from them. Good luck and hope u get the answers u are looking for x

susurration Wed 07-Oct-15 20:07:59

Thanks Andysgirl. That is what I was thinking, that I would need to see gynaecology or endocrinology for help, but no referral was ever made.

I've been trying to lose weight but really struggling with it.

AttilaTheMeerkat Wed 07-Oct-15 21:24:11

You should now be given a referral to see a gynaecologist. From what you have written PCOS is a distinct possibility (your current symptoms do tie in with you having PCOS); why has another GP dismissed this?.

With PCOS there is usually an imbalance of LH (too much LH) to FSH (not enough FSH being produced.

Some PCOS patients find following a low GI/GL eating plan works well for them.

Verity's website may also prove to be useful to you:-
www.verity-pcos.org.uk

susurration Sun 11-Oct-15 20:49:25

Thanks Attila, sorry for taking so long to come back this, i've been very busy at work.

Will take a look at the verity website, thank you. I don't know why the GP dismissed the idea. In fact when I asked for the tests initially he wasn't that keen on doing it, I had to go to see another of the doctors to get the tests done. I'll phone and ask for another appointment to be referred to Gynae.

Unless, can I self refer do you know?

Thanks again!

ComeOnBabyS Wed 14-Oct-15 14:51:24

Hello
I have PCOS. I follow a low carb diet and Weight Watchers.

I pushed my doctor very hard for metformin as I am ttc and have been for 11 months. My BMI is 35 and I want to get that to 30 at the very least. I have already lost 22lbs but it has taken me ages! I am hairy (arms, chest, back, sides of face, chin, lip) so I completely know where you are coming from!

The only up side is my periods are regular which I am VVV grateful for.

The metformin will help regulate your cycle and help you ovulate. Please google for more information and print it out and take it to your GP. Take someone with you who will fight your corner as the doctor will then be less likely to just fob you off.

I take 1000mg a day (started from 1 x 500mg)

If he cannot help you then please ask to be referred they cannot leave you as you are.

If you can afford it please book a consultation with a private fertility consultant. GP's do not know about fertility - their information is limited and so is the treatments available. The very least your GP should do is let you have your blood/scan results and to refer you. Don't take no as an answer!

x

BettyBi0 Thu 15-Oct-15 16:57:43

After miscarriages whichx my fertility consultant thought were probably PCOS related I was recommended the following:

Book - It starts with the egg - really interest wrong evidence based read.
Diet - low GI, no refined carbs, candies, caffeine booze etc. OMG so boring but it felt good to be taking control of something when everything else about infertility is up in the air
Pills - metformin for 3 months pre-conception, 5mg folic acid, good quality omega 3 from NHP, high strength CoQ10

I'm not sure if it was all the changes or just placebo effect by I felt pretty good after a couple of months on the regime and it worked for my first (and so far second) successful pregnancy after several previous losses

BettyBi0 Thu 15-Oct-15 16:59:27

Oh and weight is definitely not the be all and end all of everything PCOS related. You can make lots of positive changes that might not shift pounds but can have a profound effect on your hormonal balance and egg quality

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