Second time around and no further ....

[Alenka]

Please bear with me everyone, I have had another rubbish appointment with a GP who hasn't listened and I need to vent to people who might actually get it!

When I was a kid I was perfectly normal! I had a myriad of hobbies and after school activities that I continued until I hit puberty. This was not a fun time, to put it mildly! Not only did my first and second period occur 10 months apart, but I had the added fun of gaining more than two stone for no apparent reason and also developed breast asymmetry. Que an isolated very depressed teen who was so embarrassed and isolated she didn't seek treatment or advice until she was 23!!!

Luckily by this point I'd met my partner who was super supportive and convinced me to talk to my GP.

They looked at me like I was a lazy fatty and sent me off for scans. Naturally the NHS scans revealed nothing and I was told to go on a diet and excercise more. Nevermind that I was cycling 2miles a day to work as a cleaner at an event stadium ...

My mum was great though and pushed me to go to a private gynaecologist for a check up. 20 minutes of actual conversation, a smear test and trans vaginal ultrasound later: cysts on my ovaries clear as day! She recommended I take the pictures to my GP confirming the PCOS Diagnoses, along with a request for Metformin (glucophage).

This would reduce the cysts on my ovaries, regulate my cycle, and also help start shifting some weight.

Thrilled to have an answer I skipped back home to my GP, and got told no!!! "The only reason to treat PCOS, is if you want a baby." I was told. Naturally having children was something I'd considered but my main reason was to loose the stubborn belly that didn't go anywhere. So I said we were considering having kids and was prescribed 1000mg a day. Three months and nearly a stone later (I was amazed how quickly the weight came off!) I actually did get pregnant! I had a relatively okay pregnancy, developing gestational diabetes and polyhydramnia along the way but did give birth to a beautiful and healthy boy.

Back to the PCOS though! I was told that conceiving and having a baby meant a 50/50 chance it would not reoccur. I didn't want to have another baby yet though, and had the implant put in my arm for BC just in case.

But now I was also back at square one. Baby weight to shift along with what I'd gained after, and a big career change which meant no more cycling or cleaning to keep me fit.

I took myself in hand about 7months ago; joined a gym and really cracked down on my diet. Saw some progress and then nothing. I had lost weight everywhere except, you guessed it, my lower stomach!

So I have just been back to my GP to ask for the Metformin again... I explained that no I do not want a baby, I want to loose weight and get the surgery I've been planning for 5 years! I have been turned down for the most spurious reason .... Their scan was negative so it has to be redone to prove I have PCOS AGAIN!

I'm at a loss and can't stop sniffling.

If you made it this far, thanks for letting me get that off my chest! You're all super brave xxxxx

[Activity2004]

First, I feel that you have done the right thing for standing up for yourself with your doctor. You know your own body better than anyone else. If a doctor doesn't listen to me, i go and find a new one.

How long do you have to wait for being retested for PCOS and the scan?

[Alenka in reply to Activity2004]

I have no idea. I asked if a rough time frame could be given and all I got was a shrug. One thing, I got to choose between going back to the same hospital that missed the cysts last time, or another hospital. Guess which one I chose lol!?! The thing that irritates me is that I was given so little information by the GPs. Most of my appointments have been a result of researching pcos and its symptoms, and then asking for the tests! Now I know what is wrong and what has helped, and I still need more tests! It's such a waste of time. Thanks for replying, sometimes you just need to get some whinging out of the system. X

[Activity2004 in reply to Alenka]

It's okay! Whine if you ever need to. I'm going to be around any time.

[freyja12 in reply to Alenka]

i have the same problem with my GP when they told me i had pcos i asked if there is anything i can do,they said there is nothing i have to learn to live with it then later i found this lady had pcos and was given oestrogen tablets to balance out the hormones so i went back to my GP and they said that it woud'nt work and well how do you know if you don't let me try so he was'nt willing to give me anything to help me so i have been living with this for years it is SO ANNOYING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Alys18]

oh this is awful! I wish there was more support for PCOS. For me the biggest thing is weight! I can easily gain 7lbs in 2-3days and that doesn't just fall off. I am fed up too with the weight and am concerned that when I go to the drs they won't give me metformin! Can you ask for a different GP?

[Alenka in reply to Alys18]

Unfortunately now the scan is in the system I just have to wait it out. That's what irritates me the most, it's one thing to be suspected of making the whole thing up, and another to have to wait an undifined length of time for scan that might not in fact prove anything.

[Hols969]

I don't understand why they are re-scanning you - the cysts on the ovaries are only a symptom and not the cause so you may not have the cysts anyway. Some GP's are so clueless sadly, you have previously been diagnosed so I don't understand what they are doing. They are even talking about changing the name from PCOS because the cysts are not the cause so the name is misleading (but they thought it was the cysts that caused it in the beginning)

Metformin is a tricky one as it is not licenced in the UK for pcos as it is a diabetes drug primarily, I personally would ask to be referred to an endocrinologist (if you live near London then I would recommend asking to see Professor Stephen Franks, he does NHS and private). I would also ask for a fasting blood test as you may be insulin resistance so metformin would help. Blood test then sugary drink then further blood test (don't let them fob you off that this is no longer done because it is). The one blood test they do they say shows the levels but does not show what happens when you have sugar.

Who told you that having a baby could mean your pcos would disappear ?? That is the first time I have heard that I have to say.

Diet wise, I love the 5:2 diet and once you get your head around it it is really easy and cheap too.

[Alenka in reply to Hols969]

I have a history of diabetes in the family, and developed gestational diabetes while I was pregnant so I get a blood test every year. I haven't had a fasting blood test since I was pregnant though so you'd think that would be the first thing to test. I did have my testosterone and hormone levels tested and the results were "fine" across the board according to the doctor.

It was my GP that said I might not have PCOS again after having a baby, but given the current situation I think they were talking out of their bottom!

I'm thinking a trip back to the private gynaecologist is going to be the last resort.

Fingers crossed that the scan technician knows what they're doing this time.

[Hols969 in reply to Alenka]

If your family has a history of diabetes then the GP is a twat. I would get a proper fasting blood test so you have the sugary drink as this will show how your body details with it especially from an insulin resistance point of view.

[Lojane]

As I understand it , Metformin is an off label treatment for infertility due to PCOS but is prescribed for diabetes. Insulin resistance / diabetes is linked with PCOS which is why it helps. Have you had blood test to check your glucose levels ? Maybe you could get metformin that way.

I can't see why you need another scan,in any case BC can reduce the appearance of cysts

Your GP sounds totally unsympathetic. Is there any way of getting a second opinion ?

Good luck

[Alenka in reply to Lojane]

My GP practice is quite large and I've seen 4 out of 6 about this. They either don't know much or just regurgitate my notes back to me. That's what happens at last nights appointment, it resulted in the doctor saying the notes and diagnoses were too old for me to be treated for the same condition again!?!

[Activity2004]

Is there any history of diabetes in your family?

[Alenka in reply to Activity2004]

Yes on both sides and I also had gestational diabetes so I get blood tests every year now!

[Activity2004 in reply to Alenka]

Which type? 1(juvenile) or type 2 (adult onset)?

Please check out the Diabetes Research and Wellness Foundation group on HU. and the free leaflets on the DRWF website. Go to: drwf.org.uk/diabetes-leaflets

[Alenka in reply to Activity2004]

I'm not sure, but I'm guessing type 2 as my dad is on .... Metformin! How's that for ironic lol! Thanks for the link. I'll check it out x

[Activity2004 in reply to Alenka]

The leaflets can explain the 2 types of diabetes.

When you go on DRWF on HU click on follow. You can post postings, comment, take polls, ask questions and meet other diabetics who are willing to help you with anything.

[Activity2004 in reply to Alenka]

Sounds good!

[Alenka]

I have my scan date!

Watch this space... I have a feeling there may be more complaining soon lol!

[Activity2004 in reply to Alenka]

Will do!