PCOS! Confused

Elbi

Im sorry if i am posting this in the incorrect forum, Mods feel free to move this thread if needs be.

I have recently been diagnosed with PCOS and put on Glucophage by my GP and I was just wondering does anyone of you ladies suffer from this. I have done so much googling but just feel comfused about it and a bit sad because I am still none the wiser.

I have all the symptoms and got bloods done but I still thought maybe a gynaecologist should have diagnosed it and not a GP.

I have been told to avoid alcohol with having PCOS and also avoid it because I am on Glucophage but I haven't read much about this anywhere.

I was just looking for some insight and information form anyone who knows about this.

Thanks in advance.

SunnyLucy

Hi Elbi,

I was diagnosed with PCOS about 9yrs ago (aged 19), and I still find the whole thing confusing sometimes. I'm sure there are others out there who can be more technical than I about the condition but I can tell you my experience in laymans terms anyways.

My GP arranged for me to attend the Endocrine clinic (as PCOS is, in the main, a hormone issue and not a gynae one...I think) in St. Vincents hospital in Dublin, I attend every 6 months or so. I went through various treatments to try regulate my hormones, mainly trying to decrease the male hormones. I was on the pill Dianette and found it to be brilliant with helping to regulate my period; I'm off it about 3 years now and have a cycle of about 35-40 days now which is the most regular I've ever been. I've also been on Glucophage (850mg twice a day) for about 3 years and this helps to keep my cycle regular too.

It has been a slow process and alot of trial and error, but it's definitely worth sticking it out. Unfortunately for me my weight dictates everything in relation to this; if i gain weight I will inevitably notice my hirsuitsm will get heavier, i will get heavier and more painful periods, and my blood tests with show my hormone levels are rising. I still carry a fair bit of extra weight especially around my middle but this is more due to my lack of will power than anything else I think. I haven't as far as I can remember been told to avoid alcohol but my next appointment is next week so I'll be sure to ask.

I think the best thing you can do is get all your questions together and sit down with the GP and try get your head around it, she will probably explain why you do/don't need to be referred on to a clinic like I was. I know it can seem very confusing, but having a diagnosis alone is a step up and I've found my GP and the staff in the hospital to be so kind and informative, its great knowing you have people on your side.

I hope this helps in some way, best of luck!

Maple

you'll find lots of useful information here

Elbi

SunnyLucy wrote: »

Hi Elbi,

I was diagnosed with PCOS about 9yrs ago (aged 19), and I still find the whole thing confusing sometimes. I'm sure there are others out there who can be more technical than I about the condition but I can tell you my experience in laymans terms anyways.

My GP arranged for me to attend the Endocrine clinic (as PCOS is, in the main, a hormone issue and not a gynae one...I think) in St. Vincents hospital in Dublin, I attend every 6 months or so. I went through various treatments to try regulate my hormones, mainly trying to decrease the male hormones. I was on the pill Dianette and found it to be brilliant with helping to regulate my period; I'm off it about 3 years now and have a cycle of about 35-40 days now which is the most regular I've ever been. I've also been on Glucophage (850mg twice a day) for about 3 years and this helps to keep my cycle regular too.

It has been a slow process and alot of trial and error, but it's definitely worth sticking it out. Unfortunately for me my weight dictates everything in relation to this; if i gain weight I will inevitably notice my hirsuitsm will get heavier, i will get heavier and more painful periods, and my blood tests with show my hormone levels are rising. I still carry a fair bit of extra weight especially around my middle but this is more due to my lack of will power than anything else I think. I haven't as far as I can remember been told to avoid alcohol but my next appointment is next week so I'll be sure to ask.

I think the best thing you can do is get all your questions together and sit down with the GP and try get your head around it, she will probably explain why you do/don't need to be referred on to a clinic like I was. I know it can seem very confusing, but having a diagnosis alone is a step up and I've found my GP and the staff in the hospital to be so kind and informative, its great knowing you have people on your side.

I hope this helps in some way, best of luck!

Thanks very much for your reply. You have been very helpful as I didn't know much or know anyone who has this.
I am to go back to my GP in a months time and I will then mention the endocraine clinic, I thought it was a gynae problem and nothing else.

I am on glucophage only a short time. It hasn't done anything for me yet I dont think. I still have the pain in my side and still no periods since coming off the pill 3 months ago but I heard it takes a while.

I heard losing weight helps alot with the pains and periods. I would be very over weight, despite exercising alot. I do eat alot of rubbish but since taking the Glucophage my appitite has decreased alot so with a bit of will power, which I also lack, I hope to see a difference.

As for the alcohol I get a weird pain when i drink, I assumed it was kidney infection or the likes but it was every time I drank so then I heard you should not drink much or drink at all with PCOS something to do with the hormones but that could be wrong.

Thanks again. you have given me alot of information

Elbi

Maple wrote: »

you'll find lots of useful information here

Thanks I will take a look

saa

I was getting this investigated and my Dr told me they don't really diagnose this...
I am 20 on the implanon, noticing symtoms for three years but also have had the implanon in for three years, so will wait another three years until im off it, loose 4 stone and then see if the symptoms dissapear

or are there any tests I can ask for or a referral to decipher if I have PCOS, and also I know I'm only 20 but Id like fertility tests but I doubt they'll entertain that request!

SunnyLucy

Hi Saa

I had to google Implanon there as I hadn't heard of it. Can I ask why you're on it, are you using it strictly as a contraceptive?

You can ask for a referral like I got, tell your GP that you want to know for certain whether or not you have PCOS. Though Elbi said her GP was able to diagnose her, its based on blood tests so really I think your GP should be able to do it for you in this day and age. Probably best to ask for a referral though as the hospital see more cases of it than a GP would and would have more information/tests available to them i reckon. Also the severity of symptoms vary from case to case so it would be good for you to know exactly how extreme your case it.

From research that I've done, PCOS never actually disappears even when you lose the weight, it just improves with weight loss. Also you shouldnt have to wait 3 years if you dont want to, I was diagnosed at 19 and pretty much started having it treated at that stage.

Cutie18Ireland

I was diagnosed with PCOS at 23 which was last year. I has all the usual symptoms: excess hair, greasy hair, oily skin, painful periods etc. My doctor was brillant, she knew exactly what PCOS was.
I was first sent for blood tests, then for an internal ultrasound. Blood tests showed my testosterone was high and there were 10+ cysts found in the internal ultrasound. I was then referred to the gynae in the hospital who basically said my doctor had done everything they could do and that was it. After 6 months I went back to my doc to get prescription renewed, she just took blood pressure asked how things were going and gave me another prescription.
In october I was in hospital to have my appendix removed and they did an ultrasound as they thought first it was something to do with PCOS but there were no cysts found, in other words the dianette really do work and that was only about 3 months after I started taking it.
I have never heard about avoiding alcohol. I dont drink that often but it never seems to affect me any different than before.

Maple

Just to note that if you come off the pill, your symptoms may reoccur. In my experience the pill is only a stop-gap measure. A low GI diet helps with controlling PCOS.

SunnyLucy

Thats great news Cutie18Ireland. Have you noticed an improvement in the excess hair or your weight? These are the two things that would bother me the most.

The hormones in my bloodworks were so messed up and OTT that I didnt need a scan to confirm I had PCOS, so I don't know how many cysts I had then or now, I've gauged my improvement over the years on the reduction of excess hormones in my blood tests, the reduction in the excess hair and the improvement in my menstrual cycle.

It's worth noting that polycystic ovaries and Polycystic Ovarian Syndrome are not mutually exclusive, it is possible to have one without the other.

Cutie18Ireland

hair is not as thick as it was, dont need to wax as often.

weight: been about the same. I was very sick after my appendix so lost a good bit then, but back to what would be a normal weight for me now.

saa

Thanks I should ask for a referral for an ultrasound when i go back to my college doctor, I literally cannot talk to my own he's so condescending and thinks he knows whats best, plus I've tried to change but no one will take me where I live (medical card)

got blood tests done, cortisol is extremely high but that could be from anxiety.

I'm on the implant (implanon) because I'm 14 stone, so most of the pills i tried made me sick and im not able to take multivits everyday never mind the pill!

So anywho the doctor wants me to lose weight I know thats obviously a good thing but its a bit of a yo yo situation with the eating disorder.

so I feel a little stagnant, weight 2008 88kgs, weight 2011 90 kgs difference in body shape, smaller breasts larger mid section, thin skin, lots of purple veins, stretch marks, oily skin, red rounded face, excessive hair, depression, fatigue... not sure if its caused by PCOS or other factors.

twinkletoes2

Hi, I was diagnosed with PCOS when I was 20 by my GP after being sent for blood tests and had a ultra-sound. I'm 32 now. I was on Dianette for 10 years but it caused my blood pressure to go up so I had to go off it. I went to a new GP who was brilliant and she sent me for blood tests and an internal ultra sound which revealed that I had 12 cysts on each ovary. She referred me to a doctor in Vincent's Private who is the guru on PCOS. If you want details on this doc PM me, as I would highly recommend her. She put me on Glucophage and sent me to a dietician. In terms of the weight thing she told me that women who have PCOS and are overweight find their symptoms are greatly lessened if they can lose ten percent of their body weight. This is my target but I have a long way to go. I find the side-effects of the Glucophage quite hard to handle. The nausea is a killer. I have lost all the joy I had for food, yet the only things I seem to have an appetite for are the foods I shouldn't eat (fatty & sugary). It also has not regulated my periods. I need to take medication (Provera) to bring on a period every 3 months. How have you been getting on with the Glucophage?

Elbi

twinkletoes2 wrote: »

Hi, I was diagnosed with PCOS when I was 20 by my GP after being sent for blood tests and had a ultra-sound. I'm 32 now. I was on Dianette for 10 years but it caused my blood pressure to go up so I had to go off it. I went to a new GP who was brilliant and she sent me for blood tests and an internal ultra sound which revealed that I had 12 cysts on each ovary. She referred me to a doctor in Vincent's Private who is the guru on PCOS. If you want details on this doc PM me, as I would highly recommend her. She put me on Glucophage and sent me to a dietician. In terms of the weight thing she told me that women who have PCOS and are overweight find their symptoms are greatly lessened if they can lose ten percent of their body weight. This is my target but I have a long way to go. I find the side-effects of the Glucophage quite hard to handle. The nausea is a killer. I have lost all the joy I had for food, yet the only things I seem to have an appetite for are the foods I shouldn't eat (fatty & sugary). It also has not regulated my periods. I need to take medication (Provera) to bring on a period every 3 months. How have you been getting on with the Glucophage?

I find the Glucophage very sickening I have a kinda mornings sickness or something and when I go back in sepetember she wants me to double my dose. Like you I have gone off a lot of food, its gone to the stage where I actually cannot stomach them, All i wanted was chocolate and sweets, Which isnt like me but I think I am losing the love for them too.

I went off the pill about 5 months ago and since then everything has gotten worse, The front of my hair is soooo thin, my weight will not move, the pain in my side is worse (i have a constant kind of dull pain) and I have not got a period,
So I got a bit of spotting last month and thought it was the start of a period so went back on the pill I am now on my 7 day break and due to take my next pill tonight and still no period,
I have hormones called Primulot (i think) , so if i take them for a few days they should work and bring it on

twinkletoes2

I know exactly what you mean about the Glucophage. When I came off the pill two years ago I also had the same experience as you. My PCOS syptoms worsened which is why I went on the Glucophage. It has helped a bit but not as dramatically as i hoped. It's so frustrating but take comfort in the fact that you are not alone.

SunnyLucy

When I was first started on Glucophage I was told to take it an hour before I ate, and I used to feel so sick for that hour, then about a year ago I mentioned it to doctor in the Endocrine clinic who was shocked that I had been told that and couldnt stress enough that I was to take it directly before I ate, the nausea is nowhere near as bad now thankfully. Do you eat something as soon as you take it? I don't feel that Glucophage is doing much for me anymore though, I have an appointment in the hospital on Thursday so I'll see what they say/recommend. I'll also ask about the effects of alcohol on PCOS as mentioned in an earlier post.

Can I ask if anyone has any thoughts on children and/or their ability to conceive? I'm not even sure if I want to have children though I'm sure I'll feel differently if I meet someone I see myself having a future with. I've dated guys before but thankfully we were too young to have to have the "do you want children" convo. I've just started dating a guy and I'm not sure when or what to tell him? How do I even go about explaining it to him that i might not be able to have children? Should I tell him early on in the r'ship or a year down the line if it gets that far or when? Sorry to get so serious but I tend to tie myself up in knots over things like this.

twinkletoes2

SunnyLucy wrote: »

When I was first started on Glucophage I was told to take it an hour before I ate, and I used to feel so sick for that hour, then about a year ago I mentioned it to doctor in the Endocrine clinic who was shocked that I had been told that and couldnt stress enough that I was to take it directly before I ate, the nausea is nowhere near as bad now thankfully. Do you eat something as soon as you take it? I don't feel that Glucophage is doing much for me anymore though, I have an appointment in the hospital on Thursday so I'll see what they say/recommend. I'll also ask about the effects of alcohol on PCOS as mentioned in an earlier post.

Can I ask if anyone has any thoughts on children and/or their ability to conceive? I'm not even sure if I want to have children though I'm sure I'll feel differently if I meet someone I see myself having a future with. I've dated guys before but thankfully we were too young to have to have the "do you want children" convo. I've just started dating a guy and I'm not sure when or what to tell him? How do I even go about explaining it to him that i might not be able to have children? Should I tell him early on in the r'ship or a year down the line if it gets that far or when? Sorry to get so serious but I tend to tie myself up in knots over things like this.

My endo told me to take the Glucophage in the middle of my meal to help combat the nausea. Due to the fact that it can totally kill my appetite and make me fill a little sick, I start to forget to take the tablets. I am meant to take three a day. I usually My biggest concern is that it hasn't regulated my periods yet. How soon after taking it did this happen to you?

Regarding the dilemma with your new 'boyfriend' I went through this too and I suppose I just waited until I felt comfortable enough to tell him. I think you just know when the time is right. I was probably going out with him about 6 months or so when I brought it up. He was totally fine with it and still supports me when I get a bit down about it. I wouldn't rush in to telling him when the relationship is so new, wait until you get to know him better and then the conversation will probably happen naturally enough.

Elbi

Sunny. I know how you feel about the children situation. I always wanted kids but now that it might not happen for me I can't really say how I feel about it. I do think what if I meet someone and they are mad to have kids and I can't but thats all "what ifs".
As to when to tell your boyfriend, I agree with the above post. you will know when the time is right I think. Maybe some night the conversation will come you and you will have the opportunity.

Can I ask, does anyone suffer from mood swings or very bad PMS? If so is there anything you take to ease it. I get it very bad sometimes I feel like I am going out of my mind I am so tormented and sad and cross all at the same time. I sound crazy I know haha.

SunnyLucy

Twinkletoes I had to look back at my diary to find out when my periods started to regulate. I stopped taking Dianette on 1st Nov 2006 and it was July 2008 before I became what I consider to be regular, between 32 and 35 days. Every 6-8 months it can run to between 40-49 days, I just accept that this is part of my body's routine. About 6months ago I got fed up of having to take the Glucophage (850mg twice a day) and thought I knew better and wasnt as strict with myself about taking it, it played havoc with my cycle and it still hasn't returned to normal even though I'm back on it 3months now. That taught me a lesson :rolleyes:

Thanks for the advice on the kids situation, I'll take it as it comes, no point in worrying myself so early in the relationship.

Elbi I can imagine not having a period for months at a time would play havoc with your hormones and have you up and down, its terrible. I was like that as a teenager, i was torn apart by the torrent of emotions I used to feel, I almost hated myself but yet couldnt control how I felt at all. I have found since my cycle has gotten more regular my PMS has improved greatly, but I relied totally on the meds I was prescribed, I know some women use other remedies but I cant recommend any personally im afraid. Perhaps if you ask in a chemist they would be able to advise. All i can say is that you're not alone and you most certainly aren't crazy, sometimes just telling yourself that its not your fault you feel this way instead of berating yourself can help you feel a bit better and a bit more positive. Lately i'm all about positive thinking lol, hell it works for Oprah!

Boop22

Hi I just came across this thread today while browsing.
I was diagnosed with PCOS about 5 yrs ago ( I am 25 now). The doc prescribed me with Dianette and I have been on it ever since. I was also on Glucophage a couple of times but couldn't get past a month as I felt so sick!:( I joined weight watchers about 6 weeks ago and done well for the 1st 2 weeks but since then, I have basically stayed the same. I am very frustrated and wonder if it the PCOS or maybe the Dianette. I was thinking of giving my body a break from the Dianette for a while to see if it improves my mood etc. I am v emotional a lot of the time. It has gotten so bad that I have been on Anti D's for the last 2 months. I think I need to just give my body a break from everything and see if it can sort itself out with proper diet and exercise. Any tips/stories would be appreciated x

twinkletoes2

Elbi, I too get quite bad mood swings and I agree with SunnyLucy that it's probably linked to lack of periods. My consultant (who's an endochronologist) told me that it was important to ensure that I got a period at least every three months, so if I didn't get one naturally I would have to take Provera to bring it on. I don't get the pain in the side though, have you mentioned this to your doc?

Boop- I have found that trying to shift weight with PCOS is difficult, especially when you're on Dianette. If you refer back to what Maple said earlier in the week, the low GI diet is what us girls with PCOS should be on. We should be trying to eat foods with complex rather than simple carbohydrates as we should be trying to avoid a flood of sugar into our systems. There's lots of info about this diet on the net. I found whenever I follow this diet and exercise regularly I lose weight in a slow and steady manner which is the best way.

pinkballetdance

Hi everyone,
Im 19 and I was just officially diognosed with PCOS last month, but Id gotten a provisional diognosis 13 months ago. The first symptoms that lead me too A&E was an excrusiating pain on the right of my abdomen. I first went in after not sleeping, due to the pain, for 3 nights. The doctor who treated me never even examined me, told me I had indigestion and to go home, he also told the nurse to get me ibuprofen, despite me telling him Id taken them 20 mins before in the waiting room.
I went to my GP 3 days later because there was no improvement. He was away and his stand in sent me back to hospital. So I went back and was treated by a really nice young Dr who wanted the on call Gynea to asses me. He told me he thought I might have Pcos. I was 92kgs and only 5'2.
I had only had one period in the 12 months prior to this incident (I kept convincing myself they would come back and the GP wouldnt do anything about this...)

Any way I google PCOS when I got home and I decided there and then I needed to start loosing weight.
I lost 22kg in 7 months but then due to having my LC exams this summer I stopped dieting and worked on maintaining my weight.

I used the Celebrity Slim Shakes diet. (I am not connected to the company in any way) The reason Im telling you all about the diet is because how easy it is and also how perfect it is for women with pcos. Its a high protein low carb diet. It worked so well for me. I was struggling to fit into size 16 jeans now I can comfortably wear size 10!:D

I also gave up alcohol in order to help with my weight. Id read before that one glass of wine slows your metabolism for 3 days and alcohol is also full of calories.

I first met my gynea in feb and she put me on yasmin to help regulate my periods( which came back in sept but in 42 day cycles). I didnt get on with yasmin though and I started cilest on thurs. I had a scan which showed no cysts, but my bloods were extremly unbalanced. Its based on this I got my diognosis.

As for kids, I do eventually want them but I dont know if I could put myself through the ttc process.
Thats all I can think of now! Its nice to have a place where I can talk to other women in Ireland with pcos!:)

winterlight

I have PCOS and so do two of my friends. It's actually fairly common. I read somewhere recently that it's the most common hormonal problem found in women.

The symptoms I have are:
1.long cycles (48-50 days)
2.acne
3.cysts on ovaries, visible on ultrasound
4.Slightly raised testosterone (androgen) levels- this only showed up in my bloods a few months ago- my bloods used to always come back normal.

However, I am not overweight- I am a very healthy weight and I would be considered slim. Another friend of mine with PCOS is extremely skinny. So it's a myth that you have to be overweight to have pcos. I would get a few hairs on my chin and 'tache too, but it's under control.

I will be going on Metformin (Glucophage) soon. All of us with PCOS have some sort of insulin/blood sugar problem. The hormones all act on each other- it's like a domino effect. Put simply, the Metformin lowers your insulin, which in turn lowers your testosterone, which allows your ovaries to mature and ovulate. It's testosterone which causes acne and excess hair.

The pill does not cure PCOS- it just masks the symptoms. You've got fake hormones going around your body and you're having fake periods. They shouldn't even be called 'periods', they're actually just a withdrawal bleed. When you're off the pill a few months, the symptoms come right back.

There is no cure for PCOS but it can be very successfully treated. All the people I know who have conceived with PCOS have taken medications such as Metformin (Glucophage) or Clomid, or sometimes a combination of both. This works for the majority of people. If it doesn't, the next step is IVF.

It's worth charting your cycles and taking notes. I use fertilityfriend.com and have found it brilliant. A lot of doctors are still quite ignorant about pcos- if you're not walking into their surgery weighing 20stone and having a beard they'll tell you you don't have it! For those of you who were worrying about children, when the time comes, don't let a dr tell you to go away and try on your own for a year. Waste of time in my opinion. Get put on the fertility meds after 6 months at least.

LittleMissBox

hi all!
i am unaware if i have PCOS or not (although was given a misdiagnosis of it back in feb) have been given numerous blood tests and one ultrasound to try figure out if i have it. I have had all this done as i have had near strangers tell me that the hair on my chin screams PCOS. Due to my misdiagnosisand the horrendous treatment i was given by the doctor who told me, I consulted two other doctors to see what the hell it is, what causes it and what i can do.

The first thing i found out is that my testosterone is in the upper limit of normal and the hair on my chin is quite severe (i know numerous girls and women who have been given the diagnosis and have not got the hair to the extent i have it) but i do not have irregular or missed periods, i have always been fairly regular. Also for the third symptom of the actual cysts my ultrasound showed none (but the woman doing the ultrasound told me that my bladder was too full to get a clear picture (and everyone thought i was just being dramatic when i said i was in pain because i needed the toilet!tut)).

I was given a perscription for dienette as my doc felt this was the best way to deal with my hormones. However, the dienette has dramatically changed my moods, so much so i have taken myself off it because my PMS was getting too hard to handle and must go back to the doc to ask if its just the hormones.

I have spoken to several girls all my age (20-21) who suffer and the most useful information i can give about PCOS is
1. the cysts come and go. One girl i spoke too said the 2 out of the 3 ultrasounds she has had have shown cysts but the one in the middle didn't. One girls can tell when the small ones are bursting. 2 girls I spoke to have been told they have an 80 per cent chance of never having kids BUT several celebrity women suffer from it aswell and have had kids!if i am not mistaken Jamie Oliver's wife suffers but has had kids.

I am not convinced that i don't have it and i won't be until I get another ultrasound but from my experiences I know it is not the end of the world by any stretch of the imagination. I am bigger but have began dieting and excercising and find this has improved moods and all that (god bless endorphins!).

finally to anyone who has problems with doctors do not allow them to not give you the service, attention and comfort you deserve from someone in their position. When i was given the diagnosis i freaked!i was told i had PCOS by a blood test i had done in for my college doc a year and a half previous I couldn't understand how they had not told me!So i made an apointment with my GP at home and another to go back and complain about my college doc as she literally told me i had PCOS, handed me the perscription for dienette and said see you later, not even asking if i had any questions! If you have a bad experience with a doctor do not be afraid of going back to complain and threaten to report (if it is bad enough). You are paying for their help!

winterlight

You are right about Jools Oliver( model and wife of Jamie), she has been very open about the fact that she has PCOS.

Other famous people with PCOS:

Victoria Beckham- fashionista
Tana Ramsay- wife of Gordon
Emma Thompson- Oscar winning actress
Zoe Ball- tv presenter
Kym Marsh- singer and Corrie actress
Natalie Cassidy- Eastenders actress
Trinny Woodall- What not to Wear
Jillian Michaels (Fitness trainer from "the biggest loser")- she also has Endo
Kat Karney- tv presenter on Discovery Health
Kate Gosselin- US tv presenter
Brooke Shields- actress

The following women are rumoured to have pcos too...
Julia Roberts- actress
Christie Brinkley- model
Jane Seymour- actress
Marcia Cross- actress, Desperate HOusewives
Cindy Margolis- model
Jamie Lee Curtis- actress
Sharon Stone- actress
Kirstie Alley- Cheers actress
Angela Bassett- actress
Celine Dion- singer
Courtney Cox- Friends actress

winterlight

LittleMissBox,

According to the Rotterdam consensus, to diagnose PCOS, 2 out of the following three symptoms must be present:

1. oligo- or an-ovuluation (irregular, infrequent, or no ovulation)

2. clinical or biochemical signs of hypoandrogenism (too much testosterone or physical symptoms of testosterone, excess body/face hair, thinning hair on head, acne)

3. polycystic ovaries- however cysts may not show up if patient has been on BCP in recent months

Your blood tests showed that you have no.2

But your dr must rule out other causes of hypoandrogenism before a diagnosis of pcos can be made, You should also be tested for insulin resistance, did your dr do that for you?

Allie79

I was diagnosed with PCOS 6 years ago aged 25 and have just a couple of things I've learned about glucophage to share.
1. You need to wean yourself onto it, whether you've forgotten to take it for a week or you've just started it, start with one dose for the first couple of days then build up to your full dosage whatever that is.
2. You will almost certainly feel rubbish for the first week or two, my doctor told me to give it a month before giving up when I first took it to give your body time to get used to it.
3. If you're taking it, you HAVE to follow a low GI diet and you HAVE to eat regular snacks/ meals, if you don't - you get horrible cramps and nausea (which I must admit I have cheated in many occasion, knowing the consequences but it definitely acts as a deterrent!)
4. If you're on the 500mg dose and it doesn't seem to be doing anything, talk to your doctor as they can increase the dose assuming you're tolerating the lower dose tablets ok.
5. Some people just can't take it. I have a friend who's tried repeatedly to take it and she just can't. She's since completely cut wheat and sugar in all forms and amounts out of her diet (takes a lot of research and label-reading) as well as following a low GI diet and she's doing fantastic so there may be a non-medical alternative for you if you have the willpower to stick to a very strict diet.
For me, glucophage stops the headaches and other horrible symptoms, more or less maintains my cycle, slows weight gain. Glucophage plus diet controls symptoms, halts weight gain, maintains cycle. Glucophage plus diet plus exercise - feel fantastic, normal cycle, no symptoms, lose weight.
You'd think it was a no brainer but I'm forever forgetting to take it and I don't have half as much will power as I need!
With regards to fertility, don't wait till too late in life to have kids if you have the option, ttc when younger is almost always easier based on the experiences of my family and friends with PCOS. That said, 1 in 10 women have some degree of PCOS and most of them who want kids have them. I've had three kids since my diagnosis while on glucophage so it's definitely possible!
Lastly, PCOS is something people don't tend to talk about it but 1 in every 10 female friends/ family members will have it and given that there's a genetic predisposition to it, there'll be a higher occurrence within your family whether or not they've been diagnosed so you are not alone. (I have 3 cousins around my age with it that I know of!)
Good luck with it all.

willow tree

so great to hear all of your experiences, thanks for sharing.. i was diagnosed nearly 10years.. honestly i havent found any 'miracle cure'.. on another note though, i've just had a baby but it took me over a year to get pregnant (so hard at the time as all my friends seemed to get pregnant on their first try). anyways, one thing i found great was acupuncture. also i met someone who said that theres a chinese doctor in dublin who would be brilliant for me to go to but ive lost the details, must try and find them though...

Elbi

Allie79 wrote: »

I was diagnosed with PCOS 6 years ago aged 25 and have just a couple of things I've learned about glucophage to share.
1. You need to wean yourself onto it, whether you've forgotten to take it for a week or you've just started it, start with one dose for the first couple of days then build up to your full dosage whatever that is.
2. You will almost certainly feel rubbish for the first week or two, my doctor told me to give it a month before giving up when I first took it to give your body time to get used to it.
3. If you're taking it, you HAVE to follow a low GI diet and you HAVE to eat regular snacks/ meals, if you don't - you get horrible cramps and nausea (which I must admit I have cheated in many occasion, knowing the consequences but it definitely acts as a deterrent!)
4. If you're on the 500mg dose and it doesn't seem to be doing anything, talk to your doctor as they can increase the dose assuming you're tolerating the lower dose tablets ok.
5. Some people just can't take it. I have a friend who's tried repeatedly to take it and she just can't. She's since completely cut wheat and sugar in all forms and amounts out of her diet (takes a lot of research and label-reading) as well as following a low GI diet and she's doing fantastic so there may be a non-medical alternative for you if you have the willpower to stick to a very strict diet.
For me, glucophage stops the headaches and other horrible symptoms, more or less maintains my cycle, slows weight gain. Glucophage plus diet controls symptoms, halts weight gain, maintains cycle. Glucophage plus diet plus exercise - feel fantastic, normal cycle, no symptoms, lose weight.
You'd think it was a no brainer but I'm forever forgetting to take it and I don't have half as much will power as I need!
With regards to fertility, don't wait till too late in life to have kids if you have the option, ttc when younger is almost always easier based on the experiences of my family and friends with PCOS. That said, 1 in 10 women have some degree of PCOS and most of them who want kids have them. I've had three kids since my diagnosis while on glucophage so it's definitely possible!
Lastly, PCOS is something people don't tend to talk about it but 1 in every 10 female friends/ family members will have it and given that there's a genetic predisposition to it, there'll be a higher occurrence within your family whether or not they've been diagnosed so you are not alone. (I have 3 cousins around my age with it that I know of!)
Good luck with it all.

Thanks very much for that post I have found it very interesting.

I am on 500mg but my doctor said the dose may need to be higher at the moment I am off most foods but I think I am actually gettin fatter. Even though I still eat rubbish I definitely dont eat anywhere near the amount I used to.

I am going back to the doctor this month so I will ask her about it.

Also on the fertility problems it causes, my doctor told me if I wanted kids it would have to be soon (I am 28 nearly) and I would have to come and see her when I do want them. I don't have a partner and dont see it happening for a while therefore in the last couple of weeks I am starting to worry about it alot but I suppose if its meant to happen I will find a way to have kids.

I am so greatful to all the woman here who have shared their stories its been so helpful fo me.

Allie79

Re your dosage - it may well need to be increased but if you think you're also putting on weight you may need to check your diet, low GI is tricky to get the hang of, when I first started I bought a book by Rick Gallop and basically only ate the things in the book that were 'green light' and made all my meals from those ingredients - I found it a really easy way to make sure you're going low-GI when you first start out.
Fertility is a scary thing, when my doctor first told me I may have trouble conceiving it scared me as I've wanted kids my whole life. Luckily for me, I had been married four years at that point and we decided to start trying immediately and it all worked out for the best. However, age isn't everything, my boss at the time was 42 when she had her little boy after 11 years of trying since her diagnosis and the difference for her was metformin which has only become widely prescribed in recent years, she'd been on various other drugs and had IVF and nothing worked, six months on metformin did the job. So finding the right treatment is just as important as age and every year that passes before you have kids also brings improvements in treatments so I wouldn't put too much pressure on yourself. And ultimately, as you said, there are other ways to have a family. Good luck with it all, Allie

LegacyUser

I was diagnosed with PCOS 11 years ago, but didn't follow any form of treatment until about 3 years ago. I'm now on 850mg of Glucophage, and it's amazing - I feel like a normal person again! I also managed to lose about 4 stone (not sure did I just get good willpower all of a sudden, or did the Glucophage help, either way I'm happy!). PCOS is a long hard road, and even after all this time I still struggle to explain it to people. There are plenty of places online for support or reading material, but I bought PCOS for dummies, which I find quite good.. It explains the problem, and also explains ways of dealing with things. Diet is a big one, Low GI seems to be the way forward, I just haven't managed it yet! Hope the Glucophage works for you

legallyblonde86

Ladies, (sorry for the long post in advance)

Advice needed please!!

This thread has probably been done before but i cant find it. I was diagnosed with PCOS (poly cystic ovaries syndrome) back in 2009 at the age of 23. My periods stopped in 2006 for nearly two years and I gained over seven stone in three years (not having changed my diet/exercise routine & I wasn't stuffing my face any more than the average woman!!)

Went to doc and a fertility clinic and was advised to lose weight. I upped my exercise and managed to lose 4 stone. Periods came back and I was delighted.

Fast forward to February this year and I gained two stone over two months, periods stopped AGAIN (diet didn't change) so I went back to docs and was told to lose weight again! Still trying to lose weight, exerceising my arse off and still gaining weight!:eek:

What else should I do? 2nd opinion? Lock myself in a room with only water and starve myself.

Anyone have the a similar experience or a more positive/negative experience?also worried about fertility issues as id like to start trying for a family in a few years. Any help appreciated.

Wibbs

Here ya go, merged with previous thread on subject. Hope you get some experiences from others on this

legallyblonde86

Wibbs wrote: »

Here ya go, merged with previous thread on subject. Hope you get some experiences from others on this

Thanks a million

winterlight

Have you tried Metformin (aka glucophage)? It helps a lot of women with pcos. You're doc should at least get you to try this and refer you to a gynae...

legallyblonde86

winterlight wrote: »

Have you tried Metformin (aka glucophage)? It helps a lot of women with pcos. You're doc should at least get you to try this and refer you to a gynae...

He won't give me anything just told me to lose weight... not helpful at all! I was at a Gynae for the same thing, had all the tests and she said the same thing... like banging my head off a fricking wall!!!

Danniboo

Hey girls,

Just looking to see if anyone else had the same symptoms after coming off Spirolactone. I'm generally regular as clockwork unless i'm on some kind of medication. I'm off the Spirolactone about 6 months now and was regular for a good while after coming off it. The last couple of months they've gone a little bit irregular though not much. While this isn't too much of a hinderence in itself a couple of occasions after getting my lady friends i've had to take time off work due to sheer exhaustion normally the day after I get them, I presume this is due to a change in estrogen. I've never had this level of tiredness with them before, I end up staying in bed until at least lunch time and don't be fit for much for the rest of the day. People have also commented on how terrible I look. I'm not anaemic and generally in good health. I know meds can take around 6 months to leave your system so just wondering if this is a symptom of coming off the Spirolactone?

LegacyUser

legallyblonde86 wrote: »

He won't give me anything just told me to lose weight... not helpful at all! I was at a Gynae for the same thing, had all the tests and she said the same thing... like banging my head off a fricking wall!!!

I know what you mean...... my gp doctor said i didnt have pcos and i was diagnosed a week ago, he also said my hormones were fine and my testosterone was very high (i was told by gynae on tues)

i was told to lose weight too and to be honest i have to lose weight of more then 5 stone to be in the healthy category... my bmi is horribly over...WAY OVER !!!! dont know what to do as i find it so hard to get motivated... i have no1 to talk to or support me... i am only 22.

would love some advice

Elbi

Hi Ladies,

I haven't posted in a while but I was at the doctor today so maybe my update will be useful information to you.

I was diagnosed in June (I think),
after years of complaining of weight gain, hair loss and pelvic pain my own doctor didn't really take any notice of me. I had no intention of changing doctors but I was very sick one day and couldn't get through to my doctor I went to my mothers doctor and she straight away said I had PCOS (i didn't know what this was at the time) anyway she did bloods and it was confirmed. I was put on Glucophage.

anyway since June I went back today for an update and I have put up 1stone in weight, my pains are getting worse and so on, I know i have not exercised as much but I definitly dont eat very much at all as the Glucophage has kind of put me off most foods. I got an emergency appointment with an endocrinologist on Wednesday so I will come back and update you on her findings.

Allie79

My friend was in the same boat - her doctor wouldn't put her on metformin till she'd shown she could lose weight, gave her three months to do it. She went low GI and started exercising and she lost 10 kg and when she went back he put her on met and she's lost another 5 so far. IMO the only way to lose weight when you have PCOS is either low GI or cutting out wheat and sugar completely (that means reading labels and not allowing even a trace amount in your food). Eating healthily means something different for those of us with PCOS.
Elbi another think I know from my own experience is that metformin will make you feel sick if you eat off your diet, if you're going to take it you have to stick to low GI and you have to make sure you don't skip meals - either way you'll get horrible gastro side effects. It may seem strange that you have to eat to lose weight but you can't afford for your metabolism to slow any further and the metformin has to have good low GI food to work on. The other thing I found is that it takes a good couple of weeks before your body gets used to the metformin and it happens whenever you start taking it again. Good luck Ladies, it's not easy but if you stick at it you'll get results XX

Boop22

Hi all,

Haven't been on this in a while. Still trying to lose weight and have recently joined a gym. Am doing exercise most days and watching what I eat but the scales don't seem to be moving at all

I know that a low GI diet is recommened for PCOS. I was thinking of joining Unislim as there programme is based on Low GI foods but to be honest I have tried ww so many times that I am just turned off the idea of joining another slimming class.

Would anyone who is following a Low GI Diet be able to give me a quick run down of their daily food diary just to give me some ideas on what foods to be eating and what to avoid.

Thanks in advance

Allie79

I'm a really picky eater so the things I eat will not appeal to most! However, the absolute easiest way to do it is this....
Buy a book called the GI diet Shopping and Eating Out Pocket Guide by Rick Gallop. It's a little book, not expensive and is small enough to fit in your handbag. Foods are organised into red, amber and green. If you only eat foods from the green list you'll be low GI - simple. If you want to cheat - go for something in the amber list and have it with foods that are green. The proper GI diet is less strict but is more convoluted in terms of trying to lower the overall GI of your meal by combining foods in certain ways like always having a few low GI nuts when you have a piece of fruit and other such tricks. SO the easiest way is to just stick to the green list and go with that, to do it the other way you need to read up on it or get someone to give you a diet plan based on the things you like and it has to be quite precise as it's easy to go from low to medium or high just by substituting one or two things in a meal. If you want the maximum effect you should also cut out all wheat and sugar but that can be very difficult to do all at once. Just my opinion and experience but good luck whether you take my advice or not!

Boop22

Thanks a million for that Allie, will deffo have a look for that book......ordered it on Amazon last night

rhapsody

Just wanted to back up what Allie79 said about the Rick Gallop book. Its really handy for throwing into whatever bag. It isn't exhaustive (it couldn't be, its tiny!), but it has nearly everything I'd look for, and I have written in some others. I haven't stuck to it very well recently, just cutting out the reds rather than going for greens only, but its a start. I hope you get on well with it Boop22

Since I'm new to [posting in] the thread, I'll mention that I have some symptoms of PCOS but not others, my GP isn't really sure yet- has referred me so am waiting on that appointment. He didn't mention anything about losing weight/ "going GI" in the meantime but I'm trying to be pro-active in case thats what it turns out to be. I've found it great to read other people's experiences, I was getting quite down (still do sometimes), feeling like less of a girl because of the elevated testosterone & its results, and from reading about the possible fertility issues. Its good to read about other people dealing with it.

Boop22

Thanks rhapsody:-) it can be really horrible at times and really get you down but just remember that you're not alone and that it is very common. Good luck wit your hospital app and wit gettin to grips wit the GI :-)