Lack of treatment

Other long term effects of PCOS

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Lack of treatment

Postby ollie » Mon Jul 18, 2005 10:18 am

Hello

I've been reading through other messages and I'm worried that I am not getting the best treatment. Some of you seem to see consultants at hospital and some of you seem to have been given a variey of treatments.

All I have had is a scan and my GP put me Dianette.

Am I missing out on what I should be getting....?
ollie
 

Postby Sassymoo » Mon Jul 18, 2005 11:56 am

Hi Sarah

I too have been wondering the same....several people over the years have asked me if I am being "monitored" - especially as I seem to have such trouble regulating my sugar levels. My GP sent me to a consultant about 2 years ago when I was really suffering with the symptoms, despite being on Dianette. The consultant told me to do Atkins....I improved so much that she signed me off and didn't want to see me again. That was that...and it did concern me that no-one was monitoring what was going on. I'm ttc now, and have an appointment with the consultant this week - so I'm hoping I can get some guidance out of him over and above the fertility aspects.

SassyMoo
Sassymoo
 

Postby Linsta » Mon Jul 18, 2005 9:54 pm

:shock: I'm really surprised that you haven't been referred to a specialist. I was referred as soon as I had my scan. I think women with PCOS need to see a specialist as they have access to more tests and treatments. It might be worth having a word with your GP to see if they can refer you, or at least try you on other meds.

I only go once a year now, but at each consultation they take blood and run a few tests. Its good to know that it is being monitored so at least if any other symptoms develop they can nip them in the bud.

Lynn x
Linsta
 

Postby Mary » Fri Jul 22, 2005 11:39 am

I always wondered too how often I should be seeing someone... originally I went to my GP cos my Mum made me go after I burst into tears about my hairness (the hate for the hair had been building up for years, I think it started when I was about 14 and I was 19 by then) My GP was a bit useless just told me I had a comsmetic problem but reffered me to a gynae for tests. After my ultrasound and blood tests I was meant to go back every 6 months, only every appt I made got cancelled, I went once in 18 months I think. Have since moved away to start uni, my new GP (both of them, one's just recently left) have both great. I have to see them at least every 3 months just to get my prescription for Dianette. They've reffered me to an Endocrinologist who's now just got me funding for hair removal on the NHS (yey!!!!!!!!!!) and I'm now going to the hospital every 6 months. Happy now I'm getting proper treatment!!
Mary
 

Postby Tracey Pellatt » Fri Jul 22, 2005 3:49 pm

Hi,

I think you should be being monitored - if not by a consultant at the hospital then certainly by your GP. When I was first diagoned many years ago I was referred by my GP to a Gynae at the hospital. I had to go initially every 3 months and then twice yearly. I must admit this did go on for a few years and I felt I wasn't getting anywhere. The Gynae didn't seem interested in new symptons that I was getting. In the end I went back to my GP and asked him to refer me to another Gynae and I have been seeing him every 3 months for the past year. I must admit I did ask my GP to send me privately as I was covered by insurance, so I am seeing him at a private hospital. However, my aunt has been seeing my Gynae as an NHS patient at our local hospital and she says he is wonderful. Had I of been referred to this Gynae originally then I wouldn't have gone private. He is such a good Gynae. I can't praise him enough. He listens and inderstands everything. I have made such progress with my treatment through him. He has expalined things to me which I didn't know about PCOS, and it was him who gave me the address for Verity - so he was clued upon it. I am due to see him in September and this will probably be my final private appointment with him. Whether he will still want to monitor me I don't know but if so I shall ask him if I can see him as an NHS patient. Or it maybe a case of my GP taking over the monitoring after that. I shall wait and see. But I certainly think you should be monitored one way or another.
Tracey Pellatt
 

Postby Raz » Mon Jul 25, 2005 8:39 am

I had blood tests, but I haven't had a scan, and I haven't been referred to anybody else :? The GP said that the results of my blood tests were so conclusive (the clearest she'd seen in years) that it was probably a waste of time having a scan. I was offered Metformin and Reductil (neither of which I chose to use), and was told that I should try to lose 5% of my weight as this often helps. She (GP) was very helpful, but should I be pressing to see an Endocrinologist?
Raz
 

Postby katy » Mon Jul 25, 2005 11:16 am

I was diagnosed a year abnd half ago.

After a year of going back and fwd to my GP, on almost an every other week basis to try figure out what was wrong with me I had my blood taken to be told the resuls were all clear. She then sent me for ultra sound & internal scan. The person who did these for me was so nice, and after the scan told me I had PCOS and said she couldnt believe it hadnt shown up in my blood tests.

Went back to my GP, who wrote "metoformin" on a bit of paper and sent me on my way. I moved house so went to a new doc surgery and I am now onto my 5th GP there. One told me "pcos has no symptoms, but your probably infertile, come back when & if you want to get pregenant & heres some anti-depressants to make you feel better" :x Needless to say I went home & cried for hours (i didnt take the tablets). - man gp

One said he didnt know what I was moaning about as 1 in 5 women have it and dont complain about symptoms etc, & sent me for more blood tests (came back clear) so I swapped to another GP as he really made me angry. - man gp

Still no joy tho, altho the last one I saw was female and she seems the nicest out of all from my 1 app Ive had with her, gonna make new one soon & see how it all goes.

As far as been monitored all Ive had is the blood test & scans at the beginning when I was diagnosed & the 2nd lot of blood tests (i wanted to know if I was diabettic & I think he didnt beleive I had pcos & wanted to clarify it! - they came back clea, so heaven knows what he's thinking).

Sorry, that turned into rather a long ramble.
katy
 

Postby Tam87 » Sun Nov 27, 2005 3:40 am

Well i havent been put on any medicine and personally im fed up with the doctors round here (im in aust) , they hav booked me in for a curette and hysteroscopy and thats it !! what drugs should i be inquiring about to help me a.) stop bleeding (which has been constant for 4 or so months) and b.) make me ovulate cause i wanna try and have a baby thnks tam
Tam87
 

Re: Lack of treatment

Postby Crouchy » Sun May 01, 2011 4:21 pm

ollie wrote:Hello

I've been reading through other messages and I'm worried that I am not getting the best treatment. Some of you seem to see consultants at hospital and some of you seem to have been given a variey of treatments.

All I have had is a scan and my GP put me Dianette.

Am I missing out on what I should be getting....?


I thought I was the only one!!! My gps have been rubbish, dianette has been as much as I've got, and I'm not being monitored and I'm the one to be made to feel like I'm wasting their time if I go to them asking for help with my pcos, I get told "losing weight will help" yeah I know but its difficult as it is. After trying for months to lose weight myself with very little success, I asked my gp for help, he said he'd refer me to a dietician... But he didn't! I feel I'm wasting their time and they don't want to help :(
Crouchy
 
Posts: 14
Joined: Sat Apr 30, 2011 11:20 pm

Re: Lack of treatment

Postby Peppiatte » Mon Jun 13, 2011 9:41 am

[quote="Crouchy"][quote="ollie"]Hello

I've been reading through other messages and I'm worried that I am not getting the best treatment. Some of you seem to see consultants at hospital and some of you seem to have been given a variey of treatments.

All I have had is a scan and my GP put me Dianette.

Am I missing out on what I should be getting....?[/quote]

I thought I was the only one!!! My gps have been rubbish, dianette has been as much as I've got, and I'm not being monitored and I'm the one to be made to feel like I'm wasting their time if I go to them asking for help with my pcos, I get told "losing weight will help" yeah I know but its difficult as it is. After trying for months to lose weight myself with very little success, I asked my gp for help, he said he'd refer me to a dietician... But he didn't! I feel I'm wasting their time and they don't want to help :([/quote]

Reading this made me feel a little better, since I've basically been told the same thing repeatedly by my own GP. They put me on Dianette about 10 years ago, but quickly took me off it as it caused migraine after migraine. Since then I've basically been told 'lose the weight and you'll be fine'. Lovely sense of caring you have there Doc. It took me 2 years to get to see a dietician, and even then that didn't go quite right. When you're doing everything you should be doing, avoiding all the right foods, excersising and all that fun stuff, and you still don't shift even 0.1% of the weight it gets rather redundant. Which then caused much head scratching (for her) and then being told 'You should be on medication, go back to your GP and get her to prescribe something'. Hello post, pillar says hi! The only monitoring I get these days from my GP comes as a letter every year for blood tests. Not because I have PCOS, but because my mother is diabetic and they want to make sure I am not suffering with the same problems. Guess its time to switch to a different GP and hopefully get some help this time.
Peppiatte
 
Posts: 1
Joined: Mon Jun 13, 2011 9:30 am

Feel completely disreagrded

Postby darkangel89 » Tue Aug 30, 2011 7:07 pm

Hi, I was beginning to wonder if I was the only person going through this!

I was only diagnosed with PCOS about 4 months ago. I was in my final year of uni and it was really rather distracting. I'd had problems with my periods since I was about 14, and as I'd had a regular cycle for 3 years by that point it seemed odd. I kept records of my periods and went to the doctors when I was 15/16 and they tried different methods of controlling them but it didn't seem to worry anyone because I was 16 and it was "normal". Plus I wasn't... obviously... trying for kids. In the end I was put on the pill, norimin, and that was that, no one did any real checks.

When I was at uni I decided I didn't need to be taking the pill and came off it. It took 8 months for my periods to start again and after a few months of regularity they went haywire... again. Anyway this time I went to the uni's medical centre after calling NHS direct. I saw a nurse practitioner who sent me for blood tests. The only point at which I saw a doctor was when I was reffered to the hospital for an ultrasound, and she told me my blood results strongly suggested I had PCOS. The ultrasound later showed that I have 12 cysts/follicles on each ovary. Since then I have seen the NP again who told me she couldn't put me on the pill because I'm slightly overweight, I smoke and my BP is high.

When I returned home from uni I went to see the doctor for more information and he basically just seemed to print of the info from the nhs website for me, which I'd already read, and told me the best cure is actually often having a baby- theres no chance of this anytime soon! He also put me on medication for my blood pressure. Other than this no one has said anything and I feel completely diregarded.

I have basically been told I have this syndrome and although I understand vaguely the biology of the situation and the scientific processes I have no real idea what I'm supposed to do. It was basically "This is what you have, have fun with it." No support, no guidence... I don't even know if it's something that will get worse, and the only info the uni NP gave me was that I'd probably only have 9 or 10 chances to get pregnant compared to other peoples 12 each year, but that they could offer me chlomid, so to come back when I want to conceive. Well I find this hard to believe since in the last 8 months from January I've had 3 periods!

The whole thing just seems overwhelming and I feel completely let down and abandoned. Ive been seeing doctors about this for the best part of a decade and it's like oh well now you have the name of it you'll be happy! I have no idea what to do at all. Does anyone have any guidence or tips?

Sarah
P.S. Sorry for the huge rant and explanation I just feel sooooo confused! :(
darkangel89
 
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Joined: Tue Aug 30, 2011 6:41 pm

Postby ellenholmes » Thu Sep 01, 2011 5:56 pm

alot of doctor still don't really understand pcos, when i was first diagnosed i think it was a good couple years before i decided that i wanted to start ttcing and only then was i referred to see a gyna at the hospital and only had one appointment and was told to lose weight and carry on with metformin, it felt so demoralising as i had been trying to lose the weight. i am currently seeing my doctor every so often to monitor how i get on with the metformin but other than that they wont do anything until i down to a certain weight or my bmi is down.
First fertility appointment 15th November 2013
Levothyroxine 50mg 1 a day 10/09/2013
Diagnosed with under active thyroid 10/09/2013
Folic acid 400mg a day 16/07/2013
Bloods and swabs done 17/07/2013
ttc since 2007

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ellenholmes
 
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Location: Norwich


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