PCOS

loveisdivine · 18-07-2013 02:13PM

marialouise wrote: »

That's good I suppose that your blood test was normal! Sometimes you'd nearly hope it wasn't so you can figure out what's going on but post-OCP it's gonna take months for your body to recover, so even though some things are fine, others will take a while to balance out, that's good you're not feeling so sick!

Started my Metformin today, no side effects tonight, have to stay on this dosage for 2 weeks and then increase...

Yeah I guess so. Its weird that my cycle was fine for the first 4 months though. But, I can only wait and see!

Good luck with the Metformin.

Mozzeltoff · 18-07-2013 04:06PM

I have PCOS for years and nothing has being done about it!

I've being to a few doctors and they have all confirmed I have it but all they seem to want me to do is go on the pill which I can't as I am over weight and there's a family history of blood clots and strokes

Last year I ended up in hospital over the damn thing and had an ultra sound. Again it was confirmed but I am just left hanging

I was told I'd be referred to a specialist but nothing. It's well over a year now and no word. I don't really know what to do!

marialouise · 18-07-2013 05:10PM

The pill isn't the only medication you can try so they should be more open minded than that

You can't go to an endocrinologist without your referral so you'll have to start again with your GP and just say I HAVE PCOS AND WANT A REFERRAL LETTER PLEASE!

What do you mean you ended up in hospital over it? And what measures are you taking yourself to do anything about it?

Mozzeltoff · 18-07-2013 06:15PM

I was in pain, I thought it was appendicitis but according to the doctor in the hospital some sort of cyst on my ovary had ruptured and that's when they decided to refer me to a gyno and I am still waiting to see one

I have being back and forth to my own doctor about this but look I am just sick of it this stage..I was told I had PCOS when I was 17, I was lumped onto dianette and when I moved I had to change doctors. They done a mountain of bloodwork and they said that I had PCOS but they were more concerned about my weight and took me off dianette and sent me off to a dietician to work on the weight and that's a disaster unto itself

I have a B12 deficiency as well as anaemia and that's their main focus

And I can't really do a lot about it because my worries and concerns are falling on deaf ears!! :mad:

I am not trying to say there is no hope for me, all I am doing here is just voicing my frustration. I reckon I should just switch doctors and start all over again

chips13 · 19-08-2013 09:20PM

Hi, I was wondering if anyone has experience with/could recommend a good GP in the Midlands area for PCOS? I've had PCOS for the past ten years and have tried a few of different GPs to no avail. I'm just finding the whole thing very frustrating at the minute.

I don't present with a lot of the "typical" PCOS sympoms.....I'm not overweight, don't have the acne/excess hair. My only symptoms are irregular periods and hair loss. I was put on the pill (Dianette) when I was diagnosed and the hair loss seemed to settle down a lot but I was changed to Yasmin a couple of years ago. The hair loss has begun to get worse lately to the point where I can notice that it has thinned out a lot, and have some very light patches. My hairdresser has also noticed. I went back to my GP and asked if it could be to do with changing the pill but she said that that wouldn't have made a difference. She ran the usual iron and thyroid tests and they came back clear so as far as she's concerned that's it, I just have to put up with the hair loss.

I'm just wondering if anyone here has similar symptoms and found anything that was particularly helpful or like I said if anyone could recommend a good GP that actually seems to know something about the condition.....if I hear one more time from a GP "You don't look like someone with PCOS" or "Most people with PCOS don't tend to lose their hair, they tend to have excess hair"....I know this is the case a lot of the time but it's just so frustrating when that's all the GPs I've attended have to say.

Any help/advice greatly appreciated!!

(Sorry for the rant! :-D)

Satine82 · 19-08-2013 10:15PM

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chips13 · 20-08-2013 12:17AM

Hi Satine82! Thanks for that, even to know that I'm not the only one that is completely frustrated with the situation makes me feel a bit better! Going back to the GP this week so will definitely ask for a referral to an endocrinologist and hopefully will get more concrete answers/treatment plan that way....fingers crossed!

Will also give the UDOs oil a go....anything is worth a try!!

Thanks again

Digs · 21-08-2013 10:14PM

Massive plus 1 on the endocrinologist! I have had irregular periods since I was about 16 and lots of pain, excess facial hair. I was lucky I had a mother who pushed and pushed my GP to refer me to an endocrinolist who I've been seeing since I was 18 and he has been an absolute godsend. I'm 28 and was back with him two weeks ago for my first check up 4 months after having my first baby

GPS in my opinion are not specialised enough to deal with pcos.

Best of luck! It can be so frustrating getting a diagnoses but once you do it really can be so easy to manage.

chips13 · 21-08-2013 10:30PM

Yeah an endocrinologist seems to be the way to go. Do you know if you have to be referred by your GP even if you are going private? Are there any endocrinologists who run private practices that you could just ring to make an appointment with directly?

Digs · 21-08-2013 10:48PM

chips13 wrote: »

Yeah an endocrinologist seems to be the way to go. Do you know if you have to be referred by your GP even if you are going private? Are there any endocrinologists who run private practices that you could just ring to make an appointment with directly?

I see my endo privately in Beaumont but still needed the referral. Seems to be the way unfortunately.

marialouise · 21-08-2013 11:15PM

chips13 wrote: »

Yeah an endocrinologist seems to be the way to go. Do you know if you have to be referred by your GP even if you are going private? Are there any endocrinologists who run private practices that you could just ring to make an appointment with directly?

You always have to be referred by your GP. They can refer you to private care but you'll always have to see the GP first!

Any key? · 23-08-2013 03:16AM

Girls this thread is so scary. I was diagnosed with PCOS back when I was 16 (27 now). I had a really bad eating disorder then, well anorexia and my mam was still in denial and brought me to a doctor to figure our why I hadn't had a period in years but to be honest I never ever followed up on it(couldn't have cared less at the time). As a grown up I am an 8-10 so I figured maybe it was all just hearsay. What should be my main concerns and what should I do? Should I tell my GP?

Mozzeltoff · 23-08-2013 03:19AM

Defintiely..go back and get some form of check up anyway! You're better off getting it looked after!

26-08-2013 08:10PM

Any key? wrote: »

Girls this thread is so scary. I was diagnosed with PCOS back when I was 16 (27 now). I had a really bad eating disorder then, well anorexia and my mam was still in denial and brought me to a doctor to figure our why I hadn't had a period in years but to be honest I never ever followed up on it(couldn't have cared less at the time). As a grown up I am an 8-10 so I figured maybe it was all just hearsay. What should be my main concerns and what should I do? Should I tell my GP?

Tell your GP everything, take it from there. Get it sorted now so you can put your own mind at rest and don't waste any more time being scared.

loveisdivine · 29-08-2013 04:11PM

Well I went back to the docs last week as its now been 4 months since my last period and all the other symptoms I'm having are still in full swing!
I saw a different doctor this time who was much nicer and more understanding, she has referred me for a pelvic ultrasound. So at least thats something.

She wants to rule out cysts before considering putting me back on the pill.

However I don't think I want to go on the pill at all to be honest. If I can get the weight and hairloss issues under control without BC then I would be happy. I dont care about fertility and I really dont want to continue using BC pills as I dont think its good for my system anymore.

Satine82 · 20-09-2013 11:10PM

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L.Jenkins · 22-09-2013 10:42PM

Any advice on what I can do to assist my Fiancée emotionally. She is waiting to see gynaecology, in the next 2 weeks. It's been put out there that she has PCOS and is waiting to be diagnosed. I understand specialists can take care of things, but she is afraid she will never be a mother.

I'm not sure whether to reassure her that things will work out or support her. What scares her the most is that I will resent and leave her if she can't bare children. This is not the case and I have no intention of walking out the door. How do I help her through her incredibly rough patches as it seems that even seeing children or pregnant women upset her?

LoonyLovegood · 23-09-2013 03:44PM

Itzy, it's just being supportive and making sure she realises you're there.

I've an endo appointment next week, not looking forward to it at all.

Satine82 · 11-02-2014 11:39PM

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Mozzeltoff · 14-08-2015 07:55PM

I know I am resurrecting an old thread BUT I need a bit of feed back. (Apologies Mods, I didn't feel like re starting a new one when I knew there was all ready an existing thread!!)

I know I have posted in this thread before but I'll give you guys a bit of my back story. Basically the short version is that I was diagnosed with PCOS when I was 16/17 and was thrown onto a contraceptive called Dianette and was told that it should regulate everything. I was on and off that until I was 24. I then moved counties and of course switched doctors. She pulled me off Dianette as it turned out I would be prone to clots and strokes, especially since there's a family history of them there.

Anyway, come last Christmas I decided to switch doctors as the one I was with didn't seem to bothered in helping me. I had bloods taken, was referred to an endocrinologist, who recommended I be put on metformin. I visited my doctor today who printed me a prescription. She's explained what to expect side effect wise and explained my dosage for the next six weeks. Apparently there will be some weight loss and everything should work out.

Now my question is to those who have being taking it, is it really as great as the doctor and endocrinologist are making it out to be? I am just a little reserved and I don't want to be getting all my hopes up.

sunshine and showers · 15-08-2015 02:34PM

Mozzeltoff wrote: »

I know I am resurrecting an old thread BUT I need a bit of feed back. (Apologies Mods, I didn't feel like re starting a new one when I knew there was all ready an existing thread!!)

I know I have posted in this thread before but I'll give you guys a bit of my back story. Basically the short version is that I was diagnosed with PCOS when I was 16/17 and was thrown onto a contraceptive called Dianette and was told that it should regulate everything. I was on and off that until I was 24. I then moved counties and of course switched doctors. She pulled me off Dianette as it turned out I would be prone to clots and strokes, especially since there's a family history of them there.

Anyway, come last Christmas I decided to switch doctors as the one I was with didn't seem to bothered in helping me. I had bloods taken, was referred to an endocrinologist, who recommended I be put on metformin. I visited my doctor today who printed me a prescription. She's explained what to expect side effect wise and explained my dosage for the next six weeks. Apparently there will be some weight loss and everything should work out.

Now my question is to those who have being taking it, is it really as great as the doctor and endocrinologist are making it out to be? I am just a little reserved and I don't want to be getting all my hopes up.

My endo has me on metformin too. It helps regulate your insulin, which is where the weight loss comes from, I think. Be careful at the beginning eating fatty/greasy food, as there can be unpleasant side effects!

It's helped me lose about 6-7 kilos since I started on it about a year ago. At the start, because I just didn't feel hungry I lost weight. Then I stayed the same after a few months. Then I combined it with healthier eating and a bit of exercise in the last few months and it allows me to lose weight more "normally". By that, I mean, it's not quite as slow and it comes off with the same effort the average person puts in. So it's not easy, but no longer feels impossible!

Good call staying off Dianette. I was on it for years and I swear it contributed to mood problems. It's also banned in France for causing clot related deaths.

ruthy_2504 · 15-08-2015 09:39PM

I too was on dianette in the early days of my diagnosis but had some nasty side effects so came off it. I didn't move onto anything else for a couple of years but am now on metformin for 7 or 8 years and have never looked back. I subsequently lost 4 stone through weight watchers which was a slow process but I don't think I would have been successful without the metformin.

6 years after stopping weight watchers I have more or less maintained the weight loss without having to watch every morsel I eat.

I really recommed you give it a go, but there can be some nasty gastro side effects so follow your drs instructions and never take without food. I always had a funny tummy so maybe they are worse with me, but even this far into taking them I can have some bad spells

Mozzeltoff · 16-08-2015 12:06AM

Thanks for the feedback ladies!! Greatly appreciated it. Today is only my second day but no real complaints as such, only a slight bit of a queasy tummy but that's it.

I was told how unpleasant the side effects are when eating fatty foods but I have made up my mind to stay off them. It'll be hard enough considering my profession (chef) but I don't fancy the idea of having those kinds of side effects and I honestly don't think it's worth it

I have being reading different posts by people on a few other forums and they seem to say it's like a miracle drug!! Again I wouldn't want to be calling it that yet but so far what everyone is saying about it is positive so everyone can't be wrong!!

ladam · 21-08-2015 11:43AM

Recently told I have pcos, i'm 25.Since finding out I have it I havnt had a proper chat with my doc (the odd phonecall) as she is waiting till after a second scan i need. All I know about pcos is what i've googled ...
Been feeling really down about it all to be honest, I dont feel I can chat to anyone (bar my partner) because I havnt been back to doc so don't know fully where I stand. Experiencing diff symptoms and not sure if its related etc. Been in quite a lot of pain this week especially and also just passed my tenth month with no period (which makes me very scared, as I was hoping to start trying this year)! Just feel so tired, down and not myself at all! I never was like this, always tried to be positive.
I feel silly writing this as I realise i've no question, just really needed a rant!!

Mozzeltoff · 21-08-2015 01:07PM

ladam wrote: »

Recently told I have pcos, i'm 25.Since finding out I have it I havnt had a proper chat with my doc (the odd phonecall) as she is waiting till after a second scan i need. All I know about pcos is what i've googled ...
Been feeling really down about it all to be honest, I dont feel I can chat to anyone (bar my partner) because I havnt been back to doc so don't know fully where I stand. Experiencing diff symptoms and not sure if its related etc. Been in quite a lot of pain this week especially and also just passed my tenth month with no period (which makes me very scared, as I was hoping to start trying this year)! Just feel so tired, down and not myself at all! I never was like this, always tried to be positive.
I feel silly writing this as I realise i've no question, just really needed a rant!!

I know how you feel. My old doctor was rather flippant with me about my PCOS and it seemed like she had this attitude that it would go away on it's own! Found it frustrating as hell :mad:

I am not sure about the pain thing tbh but the period thing, I went a year without having one at one stage!! :eek:

If your doctor is any good, they'll have a serious chat with you when have gone for your second scan. I'm sure they're going to talk to you about treating it and what not! It is treatable so don't worry too much

I know it's easier said than done but it will work out!! Just make sure to stay on their case about it!!

La.de.da · 07-01-2016 03:13AM

Again sorry to resurrect this thread but no point starting a new one.

After years of period issues I've finally been diagnosed with pcos. Weight gain, brutal acne and all else that goes with it.
I'm to start Dianette? (Spelling) and metaphomin? as treatment following gynea consult (for which I waited over 6 months)

My thyroid levels are quite low and my cholesterol is through the roof. On meds for both.

Have many of you ladies seen any or much marked improvement since starting treatment? Or is it a matter of trial and error ie different for each woman.

I'm pretty miserable. I look like I'm about to have twins any minute.

One one hand I'm glad I have a diagnosis and that I'm not going mad.

ladam · 07-01-2016 09:22AM

I recently started metformin, have been so sick and had really bad diorreah, super thirsty a lack of appetite ... Hoping it settles soon!! I'm waiting to see gyno. I'm pretty new to it all so cant give advice but just know you're not alone!

m-a-i- · 07-01-2016 01:06PM

La.de.da wrote: »

Again sorry to resurrect this thread but no point starting a new one.

After years of period issues I've finally been diagnosed with pcos. Weight gain, brutal acne and all else that goes with it.
I'm to start Dianette? (Spelling) and metaphomin? as treatment following gynea consult (for which I waited over 6 months)

My thyroid levels are quite low and my cholesterol is through the roof. On meds for both.

Have many of you ladies seen any or much marked improvement since starting treatment? Or is it a matter of trial and error ie different for each woman.

I'm pretty miserable. I look like I'm about to have twins any minute.

One one hand I'm glad I have a diagnosis and that I'm not going mad.

Hi There.
I've had PCOS for about 6 years having being diagnosed in my early 20s and it does get easier xx
I've been having it a bit rough lately with being diagnosed with Haemachromatosis and Hypoglayciema ( Too much iron and constant low blood sugar) which was a long time coming as a result of being on a high dosage of the meds for a long time. My gallbladder is due to be removed soon and I'm hoping that will resolve super big issues thats going on.
I'm slightly curvy after having lost about 2 and a half stone through Slimming World.

It took a few months for the weight and acne to change for me. Before SW I did lose about 1 stone and my face was cleared right up

Saying all that I'm in a much better place mentally then I was a few years ago. Its taken a bit of work but I go meet my friends for coffee and volunteer and all that to keep me going and while it was a bit of a chore initially I'm so glad that I forced myself to do it because mental health will help your overall health I promise xx

I still have my bad days but you'd be surprised the support out there and that there are sites like this that can help.

It gets better is the thing I suppose I'm trying to say. The diagnosis is half the battle and its all about taking it one day at a time after that

x

Plenty of ginger to help your nausea like biccies or tea.. I suffered really really badly from digestive issues something awful when I first had metformnin.

PM me if you ever have a low day x

La.de.da · 07-01-2016 03:04PM

Thanks ladies.
Best stay away from Dr Google re the medication. Reviews very mixed some frightening.

Don't have the best belly to start with IBS but by all accounts with the meformin you have to be careful with diet.
Will be started on very minimal dose increased over an 8 week period.

Good to know I'm not alone. Hopeful things will improve. Was told dropping a few stone can help. Just want a bit of life back.

La.de.da · 12-01-2016 04:27PM

Day 5 metformin. Holy moly it affects the guts something wicked.

All I can stomach is toast cereal and forcing natural yogurt.

PCOS

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