The system is failing me.

[officerbb]

I am feeling so angry at doctors nurses and generally the system that is meant to be in place.
It has taken years for me to get to see endo and was diagnosed last year.i have seen him 3 times since only to be told that my wieght is the problem and then the look and shoulder shrug that basically has me runing for the door dissappointed again.
Dont get me wrong he is a really nice guy,but being nice is not helping me.He recomends drugs (for weight loss)that my gp is never prepared to give me because of cost.
My diabeteic nurse at my gps surgery only do the 6 momth check and are not qualified to arrange insulin changes.
My gp say see the diabetic nurses(how backward is this system)so i arrange to see nurses at the hospital.
I am dissappointed as she is meant to keep in touch.has she...no i have not heard a thng since july.
I have left 6 messages for her to ring me last week,asked to speak to another nurse who claimed not to know my case and would get original to contact me.
i have blood sugars that sit at 10 all the time and my hbac is 8.6 for the last 2 tests.
It does not matter what i have taken it has stayed the same.I up the dose and up the dose and it does not change.(but my wieght is going up in accordance!)i am so tired all the time and so depressed about the situation.
My gp is no help really..nothing i say gets taken serious,all i ever get is lose weight and all my problems will dissappear.
No help anywhere.i am so frustrated.gonna ring hospital again in the moring after yet another fasting test.
If i get no joy i am going to start writing to the health boards complaining for there neglect.
All i want is control.I realise its my responsiblilty but i need to change something eg insulin, and that is out of my control.
Sorry had to vent this somewhere.i am sure i am not the only one.

[babygem]

Hi,

Sounds as though you are having a really rough time at the moment one way and another.

I know exactly how frustrating it is to be told the key to improving symptoms is losing weight, when it is so difficult to acheive with PCOS. But from personal expereince I can say that the advice is absolutely right - the important thing is to find a way that works for you to lose weight and keep it off.

I have found the low GI way of eating to be really helpful for losing weight and also starting to feel better about myself in general. I have lost over 5 stone in two and a half years - slow but steady and my best weight loss ever. Why not give this a try? There is loads of info about it on here.


I have also been doing some regular exercise for the first time ever - I am not an exercise lover but bought a Tony Little Gazelle around 3 years ago and just have it in the living room so I can jump on and use it while watching TV - great for lazy people like me! I also have a pedometer so I can watch my steps go up as I exercise, which I find a great motivator.

I have also been taking Xenical for the last few months, which has helped me lose more weight when things started to slow down. As your specialist has recommended a weight loss drug, and particularly because you have diabetes, I would think you should be able to make a good case for getting Xenical or something similar prescribed despite the cost. Perhaps if you can convince your GP that you are motivated by starting to attempt to lose weight by yourself and asking for his support you could win him round? If not perhaps you could go to see another GP at your practice?

[officerbb]

Hi.Thanks for the reply.
I have tried xenical and lost 5 stone prior to my son being conceived,but all the weight went back on after(and more),tried it for 6 months post birth but it did not do a thing,almost like my body was immune to it.The doctors wont perscibe anything else because of cost ect.
My mum was diabetic since she was 6 so my entire life has been about counting carbs and healthy eating,My diet is ok (2 days before aunt flo i have cravings BUT I AM ONLY HUMAN)but my diet on a whole is balanced.The dietian is ok with what i eat and the quantity.
Exersize ..well i swim twice a week.i have a dog that gets walked every day,i walk the kids to school.so unless i go on a tread mill 24/7 i cant see where else i can improve.
For me the insulin is the problem.I am still waiting for my nurse to call me (3 weeks now)i need to change it as the weight is going up,and the control still is not there.(bs is sitting at 10 all the time ,last 2 h test have been 8.6)the more insulin going in the more weight is going up.
My gp thinks i have a attitude problem,i keep requesting test for other things eg thyroid.
I still think there is a problem other than pcos and diabeties,but no one is listerning.Thats what i mean by the system is failing me,not only is no one helping with the diabetes side but the endos and gps are just not hearing me.
My partner is really worried about me as i am falling asleep all the time(not good when you have 2 young children)i get 8 hours a night but can fall asleep on and off all day and still feel tired.its like a wall and i have to sleep or have trouble functioning.(But again get told its weight and diabeties)
I have appointment with diabetic nurse at gps tomorrow but she can not change insulin.i am sure there will be more insults about weight but hey hO. I am so annoyed at everone,how can i take responsiblity for diabetes when no one is supporting me.
I need to return to work but to ill to work but not sick enough for benifits.
sorry rant over for now. lisa x

[babygem]

Good luck for when you see the diabetes nurse tomorrow, Lisa. I really hope you get a more sympathetic ear than you have had up to now. I wish I could think of something else to suggest to help you, but it seems as though you have all the usual stuff sorted.

I suppose all you can do is keep on about your concerns regarding your insulin/blood glucose levels and that there could be something else like a thyroid problem going on. Could the nurse at least authorise a thyroid test for you? At least you could then come away feeling that you had acheived something from your appointment with her??

Fingers crossed for tomorrow - feel free to rant here, we may not be able to help in any practical way but at least we can offer each other a friendly ear!

[officerbb]

Hi again.
Thanks.I know there is not much people can do its just nice to put it into words,and to reflect on things.(otherwise i think i would go mad!!)
I have been tested for thyroid about 6 months ago,also had tests for cushings.(as i have 95per cent of those symptoms too)but that was 4 years ago.
The only reason i was dyagnosed with pcos is because of my history.The blood test did not prove anything and when i had a scan for my ovaries,the ovaries where behind myy intestine/bowel.
So now they just put everything down to pcos or diabetes.

The nurse tomorrow will only test my feet and wee.thats it,she is not qualified to do anything else.But she may get my wrath tomorrow.
My head is so screwed up just now i fear what may come out

[rainy]

ask for a second opinion. I understand how you feel when someone tell you one thing and another person tells you something else. A blood sugar level of 10 is high you should be on medication. About the weight loss your GP or nurse could also refer you to get discounted gym/ leisure centre membership so ask for it. Also ask for another ultrasound when i had mine done i was told to drink 8 glasses of water 90 min before the examination. you should seriously complain as they do seem neglectful.

[officerbb]

hi.I just thought i would hive an update.
I have seen the nurse just before christmas,she changed my insulin to humalog 50/50 mix.(she did not want to change it but i got my own way in the end)
For the first time in months i am awake all day and have some energy.when i told her how much better i was feeling she doubted it was the insulin and was in my head.Anyhow i am uping the dose every two days and still hitting 10.but i feel better.
I have tried the gym(never again) done xenical twice and as for second opinions i know they wont give it. As i get palmed off with everything.I have been for 2 scans and they could not see the ovaries as they are twisted behing bowels.
I have complained a few times in regards to gp but all i ever get is a letter of appology.i would take these things further but i have not got the time and dont see the point.It does not get you anywhere.

[epona]

hi i know how you feel about dr's well so called health profesionals in general, my currant GP is good and i come away from thoes appointments feeling ok, but i recently saw a gy/ob but as soon as i said id had 3 unassisted pregnancys he switched off an i didnt feel that i was listened to at all and left his office in tears of frustration and feeling like i had wasted my time