WHat Can Be Done To Make Our Doctors More Aware Of PCOS?!?!

kentbird · 08-27-2009, 09:35 AM

Ladies, i for one am fed up of the way the NHS treats us here in the uk.

Most of our doctors and even out specialists have NO idea what they are on about regarding our PCOS and treatment.

Its ridiculous and I just wondered if anyone knew of anything that could be done to help us out and future PCOS sufferers as there are so many of us here in UK.

My own GP has hardly any idea what PCOS is about, and therefore i was referred to a specialist in fertility, who although is lovely, doesnt seem to know half as much as our fellow cysters in america's doctors seem to know. How can our health system be so naive. Surely with the amount of ladies suffering pcos they have realised they need to go out and learn a bit more to help us.

ANyway i just thought here we could rant about the complete uselessness of our health system, and maybe, someone somewhere knows of a decent specialist, or knows of a way we can all help each other so our doctors are made aware of our struggle!>!

Rant over for now xxxx

much love ladies xxxx

Merigreen · 08-27-2009, 01:45 PM

I don't have any solution for you, but I just wanted to say that as an American, I don't feel as though my doctors are very informed about PCOS, either.

I wasn't diagnosed until last year despite seeing countless doctors (endos, gyns, regular physicians, chiros, derms) over the past 20 years about all of my symptoms. PCOS was never even mentioned to me.

My RE (who diagnosed me) is some help, but he's more focused on getting me pregnant. That's why I've turned to alternative meds, so that I can take control of my own health since the medical establishment is not helping.

KatCarney · 08-27-2009, 05:17 PM

I think the issue is two-fold. Patients need to make more effort to learn about pcos, too. Not just by participating in message boards, but by reading the on-going research on the topic. The amount of mis-information that is spread between patients is quite disheartening, especially when there is a LOT of information out there.

Next, patients need to take a proactive approach to working with their doctors - even when the issue is something other than pcos.

- Ask more questions.
- Get very clear on treatment options, and the reasons behind certain treatment paths
- Clearly state when you feel that care has been substandard
- Don't be afraid to change doctors

When it comes to pcos, there's a VERY good Medifocus guide that, in my opinion, every pcos patient should OWN, and perhaps give to their doctor.

It's at the top of the research forum here: http://www.soulcysters.net/forumdisplay.php?f=45

Eva37 · 08-27-2009, 06:15 PM

i know what you mean, it can be quite disheartening sometimes. Could you change dr like Kat said?? I had to change dr to get pcos help.

reading up on pcos is a great idea, too .

kentbird · 08-27-2009, 07:28 PM

I have researched until im blue in the face, my doctor is not interested. I was sent to a specialist who will only do things his way and not even discuss the things i research.I cannot find another doctor as we have to be referred each time and are only allocated to the one in our area, and the one i see is the only one in the area.

I agree we all need to be more aware but in some cases it doesnt help.

not-waving-but-drowning · 08-28-2009, 12:47 PM

I know how frustrated you feel! I've been mucked around by the NHS for the last 12 years. I've tried every approach depending on where I've been mentally/emotionally/physically. Gone in there ready to fight armed with research......gone in there head down and beaten ......had tears.......had tantrums......taken DH and family members for support........sometimes practially got on my knees and begged. Every time the allocated specialist, endo, gyn gets fed up of me (or I get fed up of them)....I get passed onto the next at a different hospital who always say the same thing 'have you tried metformin?'.......I reply I have and I'm allergic to it CHECK MY NOTES PLEASE....and they say......'oh we can't help you then' just go away and lose weight..... I tell them I've been monitored by the top obesity specialist in the country on a milk only diet for 10 weeks and even he says 'something is very wrong with the way my body handles fats and weight loss, I should have lost LOADS there must be some other issue'......they say 'oh well' not our problem as we don't deal with that problem...

I've had goalposts moved, u turns on decisions, contradictory advice, even had them tell me that they 'did not say what I thought they said'......I made NOTES so I know what they said and always repeat to them their advice to me to ensure we are all on the same page.

Any attempt at discussion of herbal remedies or research articles they 'don't have time' for. Actually I was in hospital seeing the new man I was allocated to on Weds.....I printed out the article about how women with pcos might become more fertile as they get older.....showed it to him and asked his opinion...... He laughed in my face and said 'THAT IS A LOAD OF RUBBISH'. He crushed any hope I may have had, not even giving me a glimmer....he could have said something like 'oh well that is a possibility' he doesn't know that for sure......OMG it really gets to me how they think they know it all and can preach about it. I don't care what he thinks, that article helped me feel a little better. I showed him the research on the herbals I'm taking.....he just flicked his eyes on it and snorted 'doubt it'll help'...........

kentbird · 08-29-2009, 07:07 AM

Oh honey im so sorry your getting no where, our nhs system is such a state. I honestly get to the point where i feel i should just give up trying sometimes xxxx

not-waving-but-drowning · 08-29-2009, 04:17 PM

Sorry didn't meant to rant or put anyone on a downer....guess I needed to vent LOL!

xxx

kentbird · 08-30-2009, 03:25 PM

HEy we all need to vent sometime dont we xxx thats why i thought id make the thread! So we could vent about our healthcare with other people who understand xxxx

GinaII · 08-31-2009, 03:38 PM

When I was diagnosed, I was lucky in that I had been watching watchdog health check when they were doing an article on PCOS. I instantly recognised the symptoms even though I was only 14 or 15, I made an appointment to see a female doctor. She instantly referred me to have a scan and it was confirmed. I was put on Dianette (contraceptiove pill). Later when I went to university, I had to change my doctor. I registered at the closest doctor to where I was living. This doctor was supposed to be a Gynaecologist as well as a GP, but when I told him why I wanted a repeat prescription for the dianette he said "don't you mean PCO". I was like, "no, I mean PCOS". URGH it was soo frustrating and I never went back to that doctor, preferring to stop taking the pills than go back to him. For someone whi was supposed to be a Gynaecologist I was appalled.

I am one of four daughters, of which 2 of us are diagnosed as having PCOS. My other 2 sisters almost certainly have it too. However, when my eldest sister asked to be tested, the doctors response was "you've got children, why bother?" So my sister came away from that feeling very dejected. We are now putting together a info sheet for her to take to her new doctor, outlining the risk factors such as heart disease and diabetes rather that the infertility issues in an attempt to get him to listen to her.

I am also desperate to get weight loss surgery, but because of our experiences, I'm reluctant to go and talk to a doctor about it. I am very frustrated by the whole thing.

eizzil · 09-08-2009, 01:11 PM

I just wanted to let you ladies know that there is some hope for us and the nhs out there. Yeah ok i ve had te doctor that said oh metformin does nothing for you and just put me on dianette and told me to go away and get on with it, oh and come back for your check up while your on dianette. Then i moved away to london for uni and my check up came while i was in my first year, my blood pressure was high and he took me off dianette immediately and sent me for an ultrasound, he told me 2 wait 3 months and try to lose some weight, as there was a massive cyst which they wanted to see if it went away. Luckily by the time of my next scan it had but my blood work had raised prolactin levels. At this point he admitted that he didnt know what this meant and sent me to the endocrinlogist for more investigations, which were arranged at my first appointment. I went back this last time and even though i had put on a little weight, he has prescribed me metformin and also he has refered me to the laser clinic there for a chance to get some sessions on the nhs for my hairyness. Its not available to everyone and its only available at the hospital im at but its a sign that things are changing within the nhs and that hopefully it will become more widespread throughout the country.

Good Luck ladies and chin up we will get the treatment we deserve and need in the end.

Lizzie xxx

PinaColada · 09-08-2009, 09:30 PM

The NHS is a joke. My GP is not interested in my PCOS and told me just to shave like the rest of her PCOS patients and to diet, She said most of her patients were not on medications for PCOS symptons. NHS has spents thousands of pounds on my Infertilty treatment, 6 years later im still not pregnant and have been seriously ill after many failed cycles because I kept getting serious OHSS. In the end I have went to a private Infertilty clinic who specialise in individual treatment plans. I got extra blood tests that the NHS didnt take that tell me how I will respond to treatment before I start. Im now on Metformin and starting IVF on Friday. If the NHS had done simple bloods like AMH etc then they would have saved thousands. They were not willing to change/alter my infertilty drugs either after 8 failed attempts I never went back and went Private. After I have a baby, I will go private again and see a laser specialist and dietition etc

magzarooni · 10-01-2009, 05:44 AM

Can I just say that all of these stories sound oh so familiar to me !!! I was at my doc the other day to see if she would let me try vaniqa for my hirsutism, my own doc wasn't available so I saw a woman locum doc. She was extremely patronising towards me saying that I am not overweight and I HAVE MANAGED TO HAVE 2 CHILDREN , so therefore I do not strike her as being a classic pcos sufferer. (In between having my 2 sons Jamie who is now 16 and Reece who is now nearly 4 I had 2 miscarriages). She saw that I was less than impressed by her attitude and has agreed to let me get some blood tests done to check on my hormone levels etc grrrrrrrrrrrrrrrrrr .I was tested for pcos nearly 4 yrs ago and it was confirmed. Am I the only woman who thinks that docs aren't in the slightest bit interested in our condition and who somewhat treat it as something trivial and they feel like there are bigger issues to deal with. Granted there are people who are a lot worse of than us pcos gals but, I don't think our condition should be scoffed at in any way shape or form. Magz xxxx

Rant over lol xxx

magzarooni · 10-01-2009, 01:56 PM

I am new to this website and thankfully I have arrived in a place where I can discuss all my problems with people who trully understand what pcos is like.I got diagnosed for pcos nearly 4 yrs ago but I have always had problem periods, excess facial and body hair which all make me feel really low and defo unfeminine.My other half says that he loves me and although he can see my facial hair that I am still beautiful but, hey he doesn't really understand how I feel.I find that my docs are less than helpful and although they are gnna check my hormone levels for the menopause,I have never been offered any medication (except the mini pill which I am on to make me have a period) Does anyone have any good advice that will make my doc actually take me seriously and do something to help me as I feel like I'm fighting a losing battle.It has taken from I was 17 (when my periods started to being 31 before they sent me for an internal scan of my ovaries ) HELP!!!!!! Magz xx I am now 35 btw xxx

kentbird · 10-01-2009, 05:19 PM

Hey magz, welcome to sc!!! it really is a great site!!! We need a chat thread somewhere where we can all ***** and moan about pcos!!! It really does help!!!!
Sorry your doctors seem to be as crap as mine!!!!!! Hope being on here gives you some information you can take to them and show them you know what you need xxx