Let down by the NHS, feel angry and upset, PCOS.....

[npg1]

Well today was the day i thought I would get some answers. Had blood tests a few weeks ago and they indicate PCOS and doc referred me to a gynocologist. Today was my appointment (which i thought would be for a scan as the doc had said), all she did was talk about PCOS and then said she would need to get me a scan, which I assumed at that time she was going to do. No, she said she has to refer me to have a scan in 3-4 months time and that I also needed some more blood tests done which I assumed the nurse in the room with us was going to do as she was writing out the paper. No, they didnt do anything except send me off to have bloods taken (which luckily I had done in the same hospital) and just expained what PCOS is, which I already knew!

I am really upset as i thought today would answer alot of things for me. I am now wondering if I can pay to have a scan done privately so at least I know for definate but not sure how that would work.

Sorry for the rant but every time I use the NHS they just seem to let me down.

Sorry they were rubbish

I am having a private ultrasound for a different reason for £125 next month. I assume interpretation/ advice of any sort would be more, but might be manageable?

Did you express your disappointment at the time?

I have pcos . Is it becasue you are ttc that you want to be seen sooner? Do they know that?

oh I am sorry it hasn;t gone well today

cruel to keep you waiting if you're ttc

I did say 'I have to come back for a scan, your not doing it now?' and when she said about the bloods I asked if she was doing them and she said no I have to go to GP and I said my GP doesnt do them, so she said there is a list on the form of where i can go. Luckily they did them in a different department at that hospital. I just couldnt belive she didnt do more and that her nurse didnt take the blood.

ggirl, im not actually trying to concieve at the mo. I have 2 dd's and not actually sure if we want a third. We dont use any contraception, apart from withdrawel under the impression of it it happens then great and if it doesnt then not to worry. I just want to know for def if I have it or not.

My hormone levels are not balanced and i asked her if this is why im quite emotional/ depressed alot of the time (which surely it has something to do with it?) and she said 'no' you can read lots on the internet! Can this happen? I just also want my periods to be regular and know I am ovulating.

Beehive, thats good for a scan, maybe I should phone around, im not sure where to start though!

I think she was under the impression that we are ttc though as I just said if it happens it happens and she said 'oh well just keep trying'

I would love to beable to see an endocrinologist about my pcos.
It's so hard to get the full story from GP.

I am not ttc either,have 2 dc ,last one a shock as presumed I wasn't ovulating.

Thanks ggirl, its really nice to speak to someone in the same situation as me.

I dont think the doc or this wonam I saw today really know whats going on which is why i wouldnt mind paying for a private scan to see. I just want my periods to be regular and know when im ovulating and whats going on in my body.

Ggirl, do you have mood swings? What were your symptoms before you knew you had it and how did you find out you had PCOS?

I can understand your frustration. I have had PCOS for years but I did not know until I had a scan when trying for a baby. What other symptoms do you have? A great website for PCOS people is www.pcos-verity.org.uk. Most people are frustrated when they are trying for a baby and they have PCOS-congratulations on having two! PCOS can affect people in different ways-weight, fertility, acne, hair problems. Have a look at the website.

I found out about 20 yrs ago when there was virtually no info anywhere about it.
I was ttc and had blood tests and laparoscopy to confirm diagnosis.
Had dd with clomid then gave up as it stopped working..ds came 11 yrs later naturally.
I seem to be ovulating regularly now ,apparently some woman do that when they reach their 40's.

I have other symptoms of pcos such as high cholesterol ,excess weight borderline high bp.

No mood swings other than pms.

My dd (17) was diagnosed with it a few months ago .She is trying to keep to a low GI diet to keep her periods regular
.So far she is pretty symptomless other than irregular periods.She had blood tests and scan to get diagnosis.
Bo follow up or anything though.

Thanks for being so helpful. sorry to hear you DD has it too ggirl.

Thank t68, I will have a look at that.

I dont really have any other symptoms to be honest apart from irregular periods (every 3- 4 months), have abit of acne on my back. the doc said he would give me a blood test just to check.

I had terrible periods for years. I started having periods when I was 11 and was a regular in the sick bay when I had them. Terrible pain and very heavy. Also weird acne/boils but my weight was steady at the time and I did not have a hair problem.

When I was 18 I went on the pill and this sorted a lot of my problems. However the pillalso masked the problem and it was not until I came off the pill to try for a baby that I was diagonosed with PCOS. My periods where all over the place-sometimes 70 days without one.

I had my twins with the assistance of clomid. I too had a laparoscopy and had cysts 'popped' before I had my children but it did not work for me.

I now take a pill which means that I don't have nasty, horrible periods (when they did happen)but I have a big weight problem and a hairy problem (!).

I too have had terrible periods since i started at 11yrs old. terrible pain and heavy bleeding. Weight always ok and not really any acne (although the odd one would flare up when i was due on) and no hair problem.

I also went on the pill at about 17 for 2 years and everything was ok then. didnt use any contraception from when i was 19- 21 as DP and i were living in LA and we knew we wanted a baby. Had DD when I was 21 (2002) Tried to go back on the pill a couple of times from the until 2005 but it just turned me into a depressed monster so didnt use anything after that kowing we wanted another child at some point. 2006 had DD2, after I had her tried the pill again but again same thing so stopped taking it and have been using nothing (withdrawel) ever since and it works for us and are very open to another DC.

I have had smears that are abnormal and wondering if this can have anything to do with it? i suffer with bad mood swings, again wondering if this can have anything to do with PCOS?

Doc said I can take a hormone tablet to help balance out my hormone which I think i would benefit from and would regulate my periods more, cant remember the name of it. I guess i need the scan first though.

I would also recommend Verity and PCOS handbook.

What frustrates me is you have to wait ages for all the tests to be told there is nothing they can do to help you anyway. I was diagnosed 2 years ago after a scan, i have reg periods but heavy and painful i have acne and i get very hairy quickly the moods are getting better but i have gone through long bouts of hormonal depression before. Allthey want to do is put you on the pill but i suffer with dead legs once on the pill so can no longer take them even though i have been sterilised anyway. The last time i went to hospital i was told to lose weight which i just have lost a stone but i wasnt overweight before my bmi was 23 so i am now on a waiting list for a hydrothermal ablation.

I just want the scan to diagnose it and then hopefully the doc can start me on some type of treatment. I had depression after i had Dd2, PND, but now im wondering.....? I dont want to go on the pill until I know this is under control as the pill will just mask the problem for a few years but then it will come back if I stop taking the pill.

Didnt have time to phone around today to try and see a private gynie but think this is what I will do now and then go back to my doc.