General discussion area. Just been diagnosed? Need to share your story and get some peer support?

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Postby kerry1780 » Thu Feb 10, 2005 2:03 pm

I was diagnosed back in November 2003 and haven't really got much further than that. My partner and I have been trying for a baby since May 2003 and I know it's not impossible for me to conceive as I have a three year old daughter.

Anyway, I returned to my doctor recently to see what they can offer and where I go from here with regards to assistance in getting pregnant and weight control. I asked the doctor if he thought it would help if I was referred to a nutionalist and he replied "If you want to..if you thnk it may help"
I then asked about being referred to a gyne unit the reply was "if you want to.." The doctor then said "I'm not really the best doctor to talk to about this - you should see Dr XXX (female)!!!!"

You go to doctors for guidance and help and they give you non-commital answers and so you are still left in limbo land.....

Has anyone else experienced the same as the above with doctors?
Should I return to the doctors and demand to be referred to the gyne unit and nutrionalist?!!

Very confused
Kerry 1780


Postby Karen » Fri Feb 11, 2005 9:04 am

Yes you should!
Decide what you want to do and inist that your doctor makes it happen. A recurring theme with women with pcos is the lack of knowledge in the medical profession. My doctor seemed quite clued up but when i got refered to the hospital, even the gyns didn't know much about pcos.
The majority of all their information came from me and the other patients. I was shocked. It seems if you want something to happen you have to be a bossy devil :evil:
Good luck
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Postby treacle » Fri Feb 11, 2005 3:34 pm

Well, i went for a check up yesterday and received the same. Funny because I was diagnosed 6/7 years ago! The doctor I had then has left the surgery and this new one just told me I should come off Dianette as I such a high risk of thrombosis. So I said - well, what can you suggest I use? I mentioned agnus castus and all I got was - best you read up on everything first then come back!!! And after all that she said if my symptons come back when I come off the pill (which they do) then I should stay on it!!!!!

Well, I had to laugh. They really are no help. We must educate them. i am determined to go back laden with PCOS leaflets!!!

Good luck and please keep posting and let us know how you get on. We may be able to offer you some advice!!!

Postby Kath H » Tue Feb 22, 2005 9:25 pm

Frustration with the medical profession - it's putting it mildly.
I'm 30 years old - when I was 19, after 2 years without a period, I went to see my GP and explained my symptoms. He basically told me I was too fat and once I lost weight I would be fine. He basically ignored my comments and concerns, undertook no tests and sent me away feeling that I was wasting his time.
After another few months, at the insistance of my mother, I went back to the surgery. The GP I saw that time (a locum) referred me to a gynaecologist. It took about 6 months for the appointment to come through. My mother came with me as she was concerned at my tendency to allow myself to be "fobbed off". I saw a consultant who must have been close to retirement age. My mother mentioned an article that she had read about PCOS, and how it seemed to fit my symptoms - he immediately dismissed the idea stating that "women's magazines these days lead every woman to think that they know better than those of us who have dedicated our lives to the subject at hand". He also came up with an unbelievable phrase for a gynaecologist "I constantly have women coming in here complaining because they're not having periods, or complaining because they are" - what on earth did he expect when he decided on his speciality?
Anyway - he decided that my absent periods were due to my weight (I was around 12 stone at the time) and referred me to a dietician, whose low fat diet I followed religiously and put on half a stone in 6-months! She claimed that I must be cheating - although why she thought I would bother going back to her each week if I was cheating is beyond me!
So I lived for the next 7 years with the medically accepted view that I was fat and wouldn't have a period unless I lost weight. Further action would only be considered if I wanted to get pregnant.
Then I moved, and changed doctors - at the new patient check the nurse was horrified to learn of my absent cycle and forced a female GP to see me immediately - she arranged blood tests and a week later PCOS was diagnosed and briefly outlined. I was put on Dianette and that was that - no other advice was given, there were no leaflets in the surgery - nothing. I was pleased to be able to give "this thing" a name, the Dianette helped my skin and facial hair, but I was pretty much left alone.
When I eventually had some time (change of jobs) and suitable internet access, and being fed up with my constant weight gain, I began researching the condition using Verity and other websites. I compiled a file of information and visited my GP (same surgery, different doctor) to see if I could get some help - being put on Metformin, consultation with a dietician with PCOS knowledge, anything. She didn't really want to know the details about PCOS and simply referred me to a gynaecologist (again). I've waited almost a year for the appointment, which is this Friday, and now I hope and pray that I can get some practical support.
I just hope that my frustration will come to an end at long last - although my honest belief is that it won't.

Sorry for the length of the post - once I started, it all came pouring out - perhaps it will help ease the pent up frustration a bit :wink:
Kath H

Thank you!

Postby kerry1780 » Fri Mar 04, 2005 1:22 pm

Just a quick thank you to you all for your comments and your stories. I know it's not easy to get through to the medical profession and so I intend to return to my doctor with information I need get what I want!!

Very determined!!

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