Hey all, well first of all how nice it feels to be able to sound off!! I was diagnosed with PCOS at 14/15 ish and told by the doctor to "come back when I want to get pregnant". I then continued to have problems and put on weight particularly around the top of my stomach. I was bullied at school and consiquently developed an eating disorder. I have continued to battle on and 7 years later was rushed to hospital as I had an extremely bad period as they thought I was having an eptopic pregnancy! I was told by a specialist that this was caused because of the build up and in effect the wall lining had no more room so it was forced out!! Gross I know, but you get the gist! Well I moved to a new area and saw a new doctor to get some more information so the above dilema didnt happen again. I was rescanned and have just been put on Metformin. The only side effects I am experiencing are like bein travel sick which I can handle if the results are going to be worth it!! As you may understand I am just furious that I was left for 7 years with no help from the nhs at all and am at the stage I am! Any words of advice or encouragement would be great :-) thanks!!
welcome to sc you will find lots of help and support here! there is so much to learn. Sorry that it's taken so long for you to get dx. I took years as well, had to move gp to get some pcos help.
im on metformin too, i find that as long as i avoid greasy/fatty/sugar foods as much as poss and always eat with the met i am ok with it. here is a link to the met section for you http://www.soulcysters.net/metformin/
Ive been referred to 2 different hospitals and got to see the same consultant at both who keeps trying to refer me to his private clinic at a cost of £130 / $160 per 30 minute session where he can help me and states he can not help me in NHS time.
Ive taken primolut/ norethisterone and on day 1 it stopped everything. By day 2 I was bleeding heavily again, and now 2 weeks later Im at the point that I was sent home from work yesterday as I was in excrutiating pain and couldnt control the bleeding. I have been to the hospital and all they have basically said is they cant do anything except give me a stronger dosage of the mefenamic acid as the consultant who likes to call me fat and tell me to lose weight (and is fatter than I anyway) whos charge I am under is not there. Go away and they will send me a referal. I tried calling NHS direct and theyre advice was 'take your medicine and some ibuprofen'. If only it were that simple!
I have had scans, been told Ovarian drilling is an option, but then told no its not a procedure they like to carry out. Ive even been told by the consultant that this problem exists with myself bc I want it to exist. Its pyschological and no medication can cure this. Im trying desperately to get a referal with a different consultant at the hospital and have complained against the consultant who I always get to see and get abused by, but the referals keep going back to him and I keep getting told to go away lose weight and Im fed up. Im half the body size I was.
When I question my GP about what other procedures are available and what other options, I get the answer 'the hospital will tell you, Im not too sure' When I finally get my referal to the hospital I get insulted and discharged because of my weight. This has been ongoing with the idiot for the past 8 years. When I last went I snapped with him and asked him what the hell Im supposed to do, I cant go on each day pouring blood or having the pain and the reply I got was 'lose weight' and 'take iron tablets'.
A friend of mine is taking metformin and has nowhere near the problems as I. My GP will not prescribe me this. Instead the ass likes to prescibe me 28 tablets of mefenamic acid. I take 4 a day, he will only ever give me a weeks supply. I ask for a full months as £7.40 a week is alot to pay out, without my norethisterone and he refuses. I have to drop the prescription in 4 working days notice of needing the pills, so I literally pick up a prescription and drop a request off. 3 weeks ago I went to pick up the prescription and was told the dr needed to see me and I couldnt have the pills until I saw him. Had to make an appointment for 3 days later as there were no other appointments. When I asked what I was supposed to do till then (the pills dont stop the bleeding but slow it from an uncontrolable torrent to a heavy flow) and was told 'whatever you need to do' I wound up in hospital A&E a day before my appointment and the hospital reissued me the months supply of medicine. Ive been passing clots the size of oranges ever since. My doctor is not concerned with this and has referred me back to the hospital.
Im off work again today as the problem has been so bad over the past couple of days, I am going to try going to a different hospital and hopefuly will get a different doctor or at least one that wants to help. Ive been told I need a hysterectomy and that further tests have shown I can not conceive and can not have children, yet they will not perform the hysterectomy because I am of child bearing age. Doesnt make sense. Im just at the stage now where Im willing to try anything to sort this out. Im tired, emotionally drained.
What you are going through sounds terrible. I suggest that you do some research on the gynacologists in reaching distance to where you live and insist that you see the gynaecologist that you want to see. It is your right to be seen by the doctor/hospital of your choice. Here is a link to the NHS website which states this.
I really hope that you get to see someone who isn't just trying to take your money. I'd also suggest that you put in a formal complaint against that doctor.
Hey all, well first of all how nice it feels to be able to sound off!! I was diagnosed with PCOS at 14/15 ish and told by the doctor to "come back when I want to get pregnant". I then continued to have problems and put on weight particularly around the top of my stomach. I was bullied at school and consiquently developed an eating disorder. I have continued to battle on and 7 years later was rushed to hospital as I had an extremely bad period as they thought I was having an eptopic pregnancy! I was told by a specialist that this was caused because of the build up and in effect the wall lining had no more room so it was forced out!! Gross I know, but you get the gist! Well I moved to a new area and saw a new doctor to get some more information so the above dilema didnt happen again. I was rescanned and have just been put on Metformin. The only side effects I am experiencing are like bein travel sick which I can handle if the results are going to be worth it!! As you may understand I am just furious that I was left for 7 years with no help from the nhs at all and am at the stage I am! Any words of advice or encouragement would be great :-) thanks!!
Welcome to SC! I'm sorry for the trouble you have had in the past.. You will find plenty of information to help you on this site and if you have any questions feel free to ask If you haven't already start eating healthy and taking a good multi-vitamin (that will make a big difference in your symptoms)
One thing I've noticed about the NHS is that they don't want to do any more for you then they think they have to do. Very much unlike America where they do more than they should to try to avoid a lawsuit.
I find that if I go to an appointment with an idea of what they should be doing for me, and some evidence to back it up (the Mayo Clinic website is a credible source), then I ususally get what I want or need. If I don't, then I change doctors. Not all of them are aware of PCOS or willing to help someone with it. Find one who is willing to help and play an active part in your own care and you'll get a good result.
I don't think it should be that way but I can't fix the NHS, so I do what I have to do to live with it.
I think the key is to get yourself armed with as much information as possible because I have found that a lot of the doctors will do the bear minimum for you and wont suggest anything new.
Hi,
I'm in the same situation as yourself, c1986. When I was diagnosed at the age of 25 (I'm nearly 30 now) my doctor at the time had the exact same attitude - that, until I wanted to try for a baby, they weren't interested in doing anything for me. I felt frustrated and let down. My periods had stopped, my weight was erratic and I was suffering from adult acne. I was put on the combined pill which did ease my symptoms, but I've recently been taken off the pill indefinitely due to migraine - I feel like I'm back where I started! I've moved to a new city recently, but my other GP wouldn't prescribe metformin because 'it's a bit of a bother really' and said he didn't think I was overweight enough. So I'm now in the position of starting over with new doctors...
Sorry, I've totally hijacked your justified venting with some of my own!
I think it would be worth sticking with the metformin and thank goodness you have finally got the intervention you needed for 7 years. As for saying you need a hysterectomy but refusing to give you one anyway, this speaks of a bad gynae to me. It might be worth looking around and it's your right to get another opinion.
Hey all, well first of all how nice it feels to be able to sound off!! I was diagnosed with PCOS at 14/15 ish and told by the doctor to "come back when I want to get pregnant". I then continued to have problems and put on weight particularly around the top of my stomach. I was bullied at school and consiquently developed an eating disorder. I have continued to battle on and 7 years later was rushed to hospital as I had an extremely bad period as they thought I was having an eptopic pregnancy! I was told by a specialist that this was caused because of the build up and in effect the wall lining had no more room so it was forced out!! Gross I know, but you get the gist! Well I moved to a new area and saw a new doctor to get some more information so the above dilema didnt happen again. I was rescanned and have just been put on Metformin. The only side effects I am experiencing are like bein travel sick which I can handle if the results are going to be worth it!! As you may understand I am just furious that I was left for 7 years with no help from the nhs at all and am at the stage I am! Any words of advice or encouragement would be great :-) thanks!!
I got the whole "come back when you want to get pregnant" speech too. And then I got put on the pill...He really couldn't be bothered with me. He didn't really explain what the condition actually is. I did a little research on my own and found this site. There is so much information here so I really hope you can find something that can help you.
I was diagnosed 2 weeks on monday, the doctor was not helpful he just said its what i had and to take asprin if i wanted to get pregnant. told me nothing about the condition, what it is what it does or why it caused my four miscarraiges!!! his ass !!!!!
So i went looking for what i could find on the internet and its all pretty scary!
what im trying to say is, your not the only one lol!
doctors are arses if they dont care....and most of them dont!
if anyone knows of a GYNE thats a decent one in the MILTON KEYNES AREA or of any well established certified informational sources we could use that would be a great help!
Thanks
AshleighJayne~~new found soul Cyster
Ive been referred to 2 different hospitals and got to see the same consultant at both who keeps trying to refer me to his private clinic at a cost of £130 / $160 per 30 minute session where he can help me and states he can not help me in NHS time.
Ive taken primolut/ norethisterone and on day 1 it stopped everything. By day 2 I was bleeding heavily again, and now 2 weeks later Im at the point that I was sent home from work yesterday as I was in excrutiating pain and couldnt control the bleeding. I have been to the hospital and all they have basically said is they cant do anything except give me a stronger dosage of the mefenamic acid as the consultant who likes to call me fat and tell me to lose weight (and is fatter than I anyway) whos charge I am under is not there. Go away and they will send me a referal. I tried calling NHS direct and theyre advice was 'take your medicine and some ibuprofen'. If only it were that simple!
I have had scans, been told Ovarian drilling is an option, but then told no its not a procedure they like to carry out. Ive even been told by the consultant that this problem exists with myself bc I want it to exist. Its pyschological and no medication can cure this. Im trying desperately to get a referal with a different consultant at the hospital and have complained against the consultant who I always get to see and get abused by, but the referals keep going back to him and I keep getting told to go away lose weight and Im fed up. Im half the body size I was.
When I question my GP about what other procedures are available and what other options, I get the answer 'the hospital will tell you, Im not too sure' When I finally get my referal to the hospital I get insulted and discharged because of my weight. This has been ongoing with the idiot for the past 8 years. When I last went I snapped with him and asked him what the hell Im supposed to do, I cant go on each day pouring blood or having the pain and the reply I got was 'lose weight' and 'take iron tablets'.
A friend of mine is taking metformin and has nowhere near the problems as I. My GP will not prescribe me this. Instead the ass likes to prescibe me 28 tablets of mefenamic acid. I take 4 a day, he will only ever give me a weeks supply. I ask for a full months as £7.40 a week is alot to pay out, without my norethisterone and he refuses. I have to drop the prescription in 4 working days notice of needing the pills, so I literally pick up a prescription and drop a request off. 3 weeks ago I went to pick up the prescription and was told the dr needed to see me and I couldnt have the pills until I saw him. Had to make an appointment for 3 days later as there were no other appointments. When I asked what I was supposed to do till then (the pills dont stop the bleeding but slow it from an uncontrolable torrent to a heavy flow) and was told 'whatever you need to do' I wound up in hospital A&E a day before my appointment and the hospital reissued me the months supply of medicine. Ive been passing clots the size of oranges ever since. My doctor is not concerned with this and has referred me back to the hospital.
Im off work again today as the problem has been so bad over the past couple of days, I am going to try going to a different hospital and hopefuly will get a different doctor or at least one that wants to help. Ive been told I need a hysterectomy and that further tests have shown I can not conceive and can not have children, yet they will not perform the hysterectomy because I am of child bearing age. Doesnt make sense. Im just at the stage now where Im willing to try anything to sort this out. Im tired, emotionally drained.
The nhs are a waste of money, they take forever to get appointments and then they do not care at all about the patients. Have you looked at well woman by aig, its womens health insurance and you can go private with it or try bupa private care is going to be much more effective for you.
I keep asking for a cervical smear but they wont give me it because i am not 25!! my mum and her sisters all had cervical cancer one at 28 yrs one at 24yrs and the other at 22!!! and with pcos theres an incresed risk so they need to give me one im going private and that its for the best as they "care" which makes a difference.
Basically unless you want children you will get nothing from the nhs for pcos. Even then they do the minimal they have to. I have had no help for my pcos nhs whatsoever I once went to see a gynae and it was one of his registrars who admitted he knew nothing about it.
I have had to have all my surgery for endo, fibroids and my recent miscarriage all done privately or through my work insurance that thankfully covers existing conditions. My advice is to be as pushy as hell or you will get nowhere.
I have found the NHS to be very helpful to me but mainly because I wouldnt just get given a leaflet and sent home. I basically refused to leave the dr's office intill he actually told me something usefull and that i didnt pay for him to go to university for 7 years for him to give me a F*****G leaflet LOL (I was not in the best of moods that day) So from then on in me and my Dr have a very good understanding with eachother haha. with the NHS you realy do need to push them and say you want more than what they are giving you, dont settle for anythign just keep on demanding till you get it. I am lucky in the way that my gyno Lisa is so understanding and is doing all she can to help me. But yeah just keep on pushing afterall your taxes pay for it so get your moneys worth!
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Thanks to everyone for the support and info. Iv been on the Metformin for 5 months now, had 2 periods and have bundles more energy. The doctor has just put me on Orlistat to help speed up the weight loss because Im fed up!! Ive lost 12lbs since I started on the Metformin and Im just trying to persivere! Anyone know where I might find some information/advice/support for Orlistat? Ive seen other forums but it would be nice to speak to someone else with PCOS taking it....thanks everyone
Help and advice - nhs let down! 
you will find lots of help and support here! there is so much to learn. Sorry that it's taken so long for you to get dx. I took years as well, had to move gp to get some pcos help.
If you haven't already start eating healthy and taking a good multi-vitamin (that will make a big difference in your symptoms)
his ass !!!!!
