Hey everyone, I'm new

General discussion area. Just been diagnosed? Need to share your story and get some peer support?

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Hey everyone, I'm new

Postby Carmen87 » Mon Aug 31, 2015 10:16 am

Hey, im new to this forum as you can probably tell, so im not sure if this is in the correct place. My apologises if not.

I got diagnosed with the delightful pcos in 2009 at the age of 22.
I had irregular periods for about 4 years prior to the diagnosis. At the time one of my cousins thought i was pregnant which was preposterous. As time went on i did think oh gosh what if i am. At 18 years old how will i cope. When i did a test it was negative so i breathed a sign of relief and then any thoughts about the lack of periods went out the window, for some reason. Then i fell pregnant in 2007 but sadly miscarried, so then a few months later i fell pregnant again. I was so scared in case the same happened but April 2008 my son was born. I bled for the first 6 weeks after giving birth, which was normal. Until, of course i started noticing that my periods were becoming even more irregular than before. At first i just put it down to having a child, but then i developed depression and social anxiety, my ballooned out of nowhere and found it extremely hard to lose it (i still do). So in the summer of 2009, i went to my doctors to see what was happening with my 'new' body. She sent me for a blood test and a scan and it was then she revealed i had in fact got pcos. I didnt have the faintest of ideas what it could be as never heard it before. She basically said it can be cured, but only if you eat correctly and look after yourself and of course lose weight. I tried (and still trying) to lose this weight but its not shifting. I feel like giving up sometimes. Then because i think that, my depression creeps in. For the next 5 years, i had no treatment, medication etc .. the one thing i did have was an operation but that was more to do with the fact i had some erosion on my cervix. It wasnt until January 2015, that i came across a group on Facebook about pcos. I have never has support like they've shown, but it does get me down sometimes because they seem to be at the top of their game what with ovulation strip tests, medication, seeing specialists etc .. and i cant help but feel like i've been neglected and let down by my doctor. So, because i've not had the help and support professional wise, i feel like a faker. I am sick of feeling sick, tired of being tired, pissed off for being depressed and anxious all the time. I sometimes feel like i'm a burden on my family :/ .. But, the thing with me is i care to much about people in general so therefore think about their needs before mine, i've always done but been told off by my boyfriend lol. Him, as well as my parents, keep saying to me about going to the doctors but then im thinking well if i go i may be told that i don't need it i'm fine or be spoken to like its not important or they say take paracetamol .. doesn't work and because of this i feel like i would have wasted my time, the doctors time and someone who may have needed that appointment more than me wasted their time, but on the other hand i know i need to go because now ive found out that if pcos goes untreated you could get cancer, diabetes etc .. which i know its not saying for definite id get them or no you wont, but there is a possibility there with the key word being 'could'. I am sick to the back teeth of being to ill to do anything. For example the other day, myself, my boyfriend, our son and my parents went out for the day and it was lovely and sunny, but all through the journey there my belly felt so dull and achy, so i thought marvelous, of all days my period makes a show and its today (it didn't though). When we got there we were looking round a museum for the first few hours, when suddenly this sharp pain ripped through my left side right were my ovaries are. I couldnt walk properly so i had to sit down for a good 45 minutes while the rest of them went to the next bit. I couldnt bend over, i felt sick. It was bloody painful.
I never thought pcos would be this bad. Im absolutely pissed off with it and its getting me down, making me feel like a fake, a burden, neglected! ARGGGHHHH!!!!

Sorry for the long story lol but thank you if you have read it all xx
Cyster since 2009
Carmen87
 
Posts: 7
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Location: Grimsby

Re: Hey everyone, I'm new

Postby Hols969 » Mon Aug 31, 2015 7:48 pm

Oh the joy of GP's - no it cant be cured unfortunately. Diet can reduce the symptoms but there is no cure, as for the weight loss, well we have slim pcos ladies too so weight loss doesnt always reduce the symptoms either... I have been fatter and thinner and they have never improved (I am on the combined pill to control the symptoms and it does a pretty good job most of the time, I also take 2-3 months on the trot which helps further (and reduces the moods too).

Generally we are at an increased risk of heart disease and diabetes and cervical cancer (so make sure you have 4 periods a year to keep your uterus healthy), heart disease and diabetes risk is increased because of the weight issues mainly.

I personally would ask your GP to refer you to an endocrinologist as PCOS is their speciality and unfortunately still a lot of GP's are not that clued up on pcos.

Anxiety and depression are a side effect as well and lots of us have this part of it too, You are NOT a burden. PCOS is a long term issue that does need addressing. Look at the NICE guidelines on PCOS as it will advise what treatment/help you should receive regarding pcos.
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Re: Hey everyone, I'm new

Postby Carmen87 » Mon Aug 31, 2015 8:26 pm

Thank you for your reply :) Aye, ive just this year found out pcos is not curable. I have never had any help with my pcos and finding out in the last couple of weeks that if untreated then it could cause cancer has made my depression and anxiety flare up xx
Cyster since 2009
Carmen87
 
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Location: Grimsby

Re: Hey everyone, I'm new

Postby Hols969 » Tue Sep 01, 2015 10:26 am

It is only an issue if you don't have periods so make sure you take medication to force a bleed. Unfortunately gp's don't seem to worry about lack of periods but they should!! I am now 46 and am not insulin resistant so you can take control of it to minimise future issues!! Ive been diagnosed for 26 years now and generally gp's have heard of it now but still offer little help so def try and see an endocrinologist
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: Hey everyone, I'm new

Postby Carmen87 » Tue Sep 01, 2015 2:29 pm

Ah right, thats put my mind at ease anyway :) How do/can you check you insulin resistant? Through a blood test? Okay, i will do as im literally new to this (despite being diagnosed in 2009) xx
Cyster since 2009
Carmen87
 
Posts: 7
Joined: Mon Aug 31, 2015 10:09 am
Location: Grimsby

Re: Hey everyone, I'm new

Postby Hols969 » Tue Sep 01, 2015 3:33 pm

Yes fasting blood test then sugary drink and then a further blood test a few hours later - it will show what/how you body copes with sugar. They say they don't do the glucose tolerance test anymore but they do, it's just cheaper for them to only do the one!!
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Re: Hey everyone, I'm new

Postby Carmen87 » Tue Sep 01, 2015 9:02 pm

Oh really?! lol, ok thank you so much for your help. You have put my mind at ease. Thank you x
Cyster since 2009
Carmen87
 
Posts: 7
Joined: Mon Aug 31, 2015 10:09 am
Location: Grimsby

Re: Hey everyone, I'm new

Postby wrigglepup » Thu Sep 03, 2015 7:52 pm

Hi,
I only found out I had PCOS about 7 years ago I am 46 also, as I have always been at war with my fat belly, I have been avoiding sugar for years. I seem to be ok with insulin. Also I have good colestral levels and blood pressure, got to get back to exercisesing though.
Anyway hope that helps. X
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Re: Hey everyone, I'm new

Postby Carmen87 » Thu Sep 03, 2015 9:37 pm

Aww thank you Wrigglepup :) Im going to be making a doctors appointment to get it sorted. Its been untreated for 6 years now :/ Thank you again for the reply and i will definitely cut out, or rather avoid sugar from now on :) xx
Cyster since 2009
Carmen87
 
Posts: 7
Joined: Mon Aug 31, 2015 10:09 am
Location: Grimsby


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