Does the NHS care about their PCOS patients?

[GamerGirlRuns]

I was diagnosed with PCOS yesterday after 8 years of investigations. This is the text I received from the NHS. I’m furious. No support whatsoever. Not to mention they spelt PCOS wrong so it’s LUCKY that I’m health literate and intelligent enough to know what it meant. Has anyone else experienced such lack of support from the NHS or their surgery? I can’t quite believe it. It’s almost as if they’re telling me I’ve got a common cold or something. It is a serious long term metabolic / endocrine disorder which puts me at risk for all sorts of sinister co-morbidities such as diabetes and infertility. Not to mention the completely unmanaged symptoms I have currently which affects my every day life. It says “healthy lifestyle helps to normalise this”, I am literally a registered nutritionist and keen on sports, I am a healthy weight and have a good nutritious diet and I still have endocrine and metabolic abnormality. Why do we have to FIGHT for our voices to be heard and for our symptoms to be treated? For reference, I have replied to the link on the text and still haven’t had a phone call. I had to phone the surgery to complain and book one myself this afternoon.

[Solly-44]

I’m so sorry, what a rubbish experience. I had a similar situation when I was diagnosed years ago. Went to see the dr for my test results which confirms PCOS. When I asked what next - is there any treatment available etc (I knew nothing about it at the time) she literally tutted at me and said “oh loads of women have it and it doesn’t give THEM any problems”

It is something that has had a huge impact on my life - I’m on the other end of 6 years fertility treatment now, and prior to that would bleed for up to 5 weeks at a time. I have never been allowed to try any medication or see a specialist.

Good for you for complaining and being assertive. You deserve better treatment than that and I hope you get some answers.

[GamerGirlRuns in reply to Solly-44]

Thank you for your reply. I’m so sorry you had a similar experience too. I’m not surprised that I’m not the only one. It’s so frustrating to hear other people’s stories and how they have been dismissed too. It does make me wonder what it would be like if this was a male problem, would there be more support for men? I think we know the answer to that question.

On a brighter note, I think I am going to turn this diagnosis into something positive. I am in an excellent position to help other women with PCOS.

I am a registered nutritionist, a qualified health coach, I have a degree in biology and a PCOS diagnosis. Perhaps I could turn this into a new career to help other people improve their symptoms through nutritional therapy and health coaching. It’s as if I was supposed to do this! I’d love to have 1-1 sessions with people, form a support clinic and write some books.

[FindMeInTheForest in reply to GamerGirlRuns]

Eagerly awaiting your books GamerGirlRuns! Please post when you are set up for pcos nutritional therapy, I'd be a willing participant 🙂

[Sophiaj]

I feel your pain, I was giving my diagnosis at the age of 18, 12 years ago now and it was a quick call oh hi, yeah by the way you've got PCOS but there's no treatment exactly the same as you really nonchalant I was a baby and thought my whole world had come crashing down I remember vividly crying my eyes out at work.... they've never cared its not a new thing, my mother helped me make a complaint at the time and it didn't really get me no where they offered me a couple sessions of laser treatment and to go on contraceptive pill ( which made things a whole lot worse at the time).

I'm here now at the big old age of 30 and still not getting anywhere been on to the gp since March this year because my symptoms have floored me, but still to be told just to get a ultra sound is going to take 2 months and 5months to see a consultant.

I literally shake at the thought of having to get in contact with the doctors now, because of the anxiety they cause...

My best advice to you would be to take each day as it comes, don't put to much pressure on yourself in finding out why but more finding into what may help ease I've recently started taking inositol, unfortunately to early for me to recommend... but I know its so cliché but stress makes it worse, I spent my early 20s living stress free and hardly experienced any symptoms now life's really getting to grips and times starting ticking it's got worse... find the joys in life.

I have faith we can all do this.

I'm sorry if I'm not much help. But just wanted to say your not alone

[Cystsister87]

Hi,I am so sorry to hear about your truly appalling experience with the NHS. I was diagnosed with PCOS, 12 years ago after suffering with acne, strong hair growth and irregular bleeding in between my (already irregular) periods. I was also border line anemic at the time of the diagnosis and was told I was insulin resistant on top of that too, so I have been on Metformin ever since. I can’t tell you how many GP’s have dismissed me and how many private endocrinologist’s and gynaecologists (which I could barely afford) I have felt patronised by.

Now unfortunately I am going through fertility issues, having suffered my second miscarriage of this year just a week ago. Please note that having PCOS does not mean that a woman will have fertility issues. My latest gyno is convinced that I have endometriosis - and that this could be what is causing my miscarriages. But we will have to see.

During my miscarriages my treatment with the NHS was pretty appalling, but then again my treatment in private health settings was pretty awful too (in fact at times is was worse). Miscarriage (like PCOS) is something that medical professionals seem to know very little about, and at times I do feel lost. But, what I have learnt is, like with PCOS you have to take things in to your own hands. You have to do your own research and keep knocking on doors until you find a professional who gives a damn. They are out there, they are just far more rare. The NHS has an attitude of ‘one size fits all’ when it comes to certain conditions - and it just doesn’t work.

I wish you all the best, you are not alone. Xx

[Kimmy2002]

I’m sorry but it’s a fairly standard story.. they don’t give toss the care I have personally had is negligent at best. It’s taken me 13 years to get an appointment with a gynaecologist and I have been paying for a nutritionist and private tests for the last two years to try and conceive and feel well.. do your own research I have a typed out paragraph that you might find helps in some way.. I wish you luck

firstly Lots of different things suite different people. My first advise is go and do your own research, Pinterest is a good source of advise.. pcos diet, pcos symptoms, pcos why, pcos what is it.. all things I typed and got some serious knowledge. There are also people on Instagram who do 30 day free meal plans and give you loads of information for free.. I think it’s called simple pcos, me personally I developed type 2 diabetes I was 6 stone over weight, lost a load of hair on my crown to point where I wear a wig and loads of hair in places there should be non! I was always tired and I just felt crap for so long it was my normal. My husband and I have been trying for a baby for over 13 years and for 10 years I hadn’t had a period so my pcos was quite severe. The first thing I did was learn what pcos actually is and then that helped me understand how to change both my diet and lifestyle to be well again. A super simple explanation is our body’s don’t tolerate sugar.. so they create insulin to match the higher sugar levels then because we have high insulin we create to much testosterone as the two hormones match each other within us and that causes a load of crappy side affects, like heavy periods, constant periods, no period at all, mood swings, weight gain, hairy chin, neck and back, loss of hair on crown and receding hair line, sweating a lot, always hot (especially hands and feet ) constantly tired, .. the list goes on but you can change it.. sugar is your new nemesis and It’s also not just simple sugar like sweets and deserts.. unused carbohydrates turn into sugars within our body if it’s not used.. so white potato, bread, pasta rice all things that if possible need to be removed from your diet even gluten free options should be a treat, There are other things you can have.. sweet potato, butternut squash, swede, quinoa buckwheat… but they are all complex carbs and will stop the ride of sugar spikes and plummets.. that’s also important as that why your craving food.. not even bad food just food I hear ya I been there.. it’s your body craving it’s next sugar high it sounds ridiculous I know.. one of the most helpful things I now know is to eat protein with every meal.. the protein helps Cut down sugar and carbs so double you protein intake (chicken, all fish and as much as you can inc oily fish if you can, please do cut the fat of bacon or pork as there is not a diet plan in the world where it’s good for you! ) and half your carbs and also good fat like avocado, humous, coconut oil, organic real butter.. please also stop counting calories.. a standard diet as you probably already know won’t work for us! and I back that up as i personally got a pcos nutritionist at my own cost and this comes directly from her... if I can shed any help I would also recommend going gluten and lacto free another side affect of pcos is loads of people are diagnosed with IBS again crappy lazy doctors what it is in most cases is a thing called pcos Leaky gut ( again Pinterest it) basically you can upset your tummy with gluten and lactos so if you avoid them it one more thing you don’t have to deal with but it’s more than just being close to a toilet constantly.. the leaky gut is twinned with inflammation of the stomach and left untreated can be nasty and again the side affects of that are feeling crap, tummy aches, the runs but it’s also affects your body working at a normal level.. Also the constant tiredness and feeling crappy seriously I know those diet changes feel like a lot but once you do it you will never look back.. I used to want to sleep in the late afternoon I was so poorly All the time I didn’t know what feeling good felt like until I changed my diet and lifestyle. One of the big issues is also stress.. stress actually makes your sugars increase crazy right! But when your stressed or upset do you reach for bad food.. look it up it’s a hormone called cortisol and it’s a ladys With pcos worst friend we need it as it helps us wake up and stimulates other hormones but we have too much.. there is no medical way of reducing so it’s a manage stress and situations. I’m 4 stone down, feeling fantastic and had conformation of Ovulation 2 months in A row but it’s taken 2 years of research and changing my diet to get there.. supplements is the last thing to briefly talk about you 1000% need inositol if nothing else, an omega 3, vit d with k3 and palmetto plus forte, also magnesium glycinate is a good Shout. There also herbal supplements called adaptogens you can take to help deal with stress hormone cortisol.. but please do your own research I can only tell you what has worked for me and every one is different. I wish you luck

[xusa]

I have the same but never went to nhs, there’s no need is something that happens to a lot of people, i just live with it

[GamerGirlRuns in reply to xusa]

Are you suggesting that the rest of us should just live with it too? I'm waiting to have my coil removed and a hormonal one put in, in order to help with my debilitating periods every month. This is something that I have learned to live with but now the NHS is trying to help me and I have been seen by someone who I feel like cares. I have also been prescribed with some cream to help prevent growth of facial hair and unwanted body hair. This is also something I have learnt to live with since I was 14.

Just because it happens to a lot of people doesn't mean that the symptoms should not be treated. You are entitled to your opinion but that is an awful one! What have you achieved from commenting that? 'I just live with it' - good for you....perhaps you don't respect yourself enough to help yourself and seek treatment for your pcos symptoms or maybe they are not bad enough for you to justify the effort.

[DrStranger]

Hey. I am currently going through the same. I was diagnosed with PCOS back in my country and had been on Metformin. But since moving to the UK, I realized no one really cares if you're not trying to get pregnant. I was told by the GP that "it's very normal to have delayed periods with PCOS". How is this normal? This is certainly not what normal women go through.I was offered to try contraceptive pills to regulate my cycles but I refused, and then got a gynaecology referral to discuss about Metformin.

You can try requesting your GP for a gynaecology referral. In the meantime, I studied about Myoinositol. It has the same efficacy as Metformin in clinical trials. And my cycle is regular again as it was with Metformin!

But still, I am hoping the gynaecologist agrees to prescribe Metformin. I felt much better with it.

Also, it would be a great idea to utilize your degree to help other women going through the same condition. I'm a doctor myself and I really hope to be in a position to help other women with PCOS someday. Good luck! x