Ok…Here we go…
Now bare with me, not quite sure of the blogging worlds etiquette when it comes to the crunch but i’ll sure as hell give it a go if i can help someone with this complex and confusing diagnosis…
At the age of 19 (I am 23 now) I like many others was diagnosed with PCOS, If it wasn’t for my mum I wouldn’t have gotten this far, probably would be 20 odd stone, still thinking i was eating healthily and more importantly wouldn’t be a MUMMY! You don’t need me to tell you that PCOS is common, or that it can cause infertility because if you have been properly diagnosed you will be aware of these facts. What is starting to become quite clear to me recently that us poor women are receiving the diagnosis and then….poof that’s it- you have a reason for all your symptoms but bugger all to help you figure out what it is (because lets be honest the GENERAL practitioners are very vague, or not very well informed of what this all means) leaving you feeling frustrated, confused and well no further on how to help yourself.
Right lets begin…
Hopefully someone will read this, think ‘that sounds like me’ and get something done about it!!
At the age of 17 I became aware very slowly that I was starting to lose out on my periods, strangely it didn’t come to my attention fully until a pregnancy scare on holiday with my boyfriend (now husband), this then prompted me to keep an eye on how long I was going without one.
37 days, 42 days, 48 days, 2 months – each time worrying myself over what the reasons were, mainly I thought I could be pregnant (even though taking every precaution but accidents do happen) and with only being 17 this wasn’t the option I would have chosen, but it would always come but making me wait longer and longer. I spoke to my mum about it all (maybe skipping the constant worry about being pregnant, I mean at 17 who really wants to go down that road…every time??!). I plucked up the courage with the help of my mum and the support of Owen (husband) to go to the doctors, once sitting in that room discussing my thoughts and feelings (basically pouring my heart out) with someone who I thought would have taken me and my symptoms seriously I was given the answer…”It’s your age, you’re only 17 it’ll be your hormones settling down”…..after a routine negative pregnancy test and trying to explain that I had been regular since 13 years of age and how could this be normal because its completely abnormal i was then probed about contraception which had completely nothing to do with what i had just told her, i left that surgery feeling disappointed, frustrated and most of all baffled at the outcome. So i waited again to see if she was right, it was just a blip and it’ll settle itself.
So 6 months later i was still no further on, still no better if anything worse! So i go back to this same doctor, having to explain myself all over again (because lets face it, what general practitioner remembers you off the top of their head?) the reply i got once again was “it’s your age, but you could try the pill that will regulate your cycle” now to me my age was irrelevant and with my family’s history of DVT’s and heart problems ‘the pill’ was not an option. So feeling annoyed more than anything I spoke again to my mum about what the doctor had said and how annoyed i felt that she didn’t actually seem to be listening to me at all and decided because of my age i needed contraception and not a diagnosis, not even an investigation…not a bean!
My lovely mum then said to change my doctor (explain myself all over again) but she would this time come with me (by this time i was 19and felt a bit silly) and this is where the ball got rolling… my mum is bless her is like a lioness looking after her young so was rather forceful and blunt with the dear doctor (who luckily knows her off the top of his head and wasn’t the slightest bit offended…thank god HA!)
Hallelujah!!
The doctor listened and said he would arrange some blood tests and a scan (2 things MORE than the doctor previous) so I was feeling a lot more positive and rather smug to say the least, my mum was a power to be reckoned with and I got what i wanted, to be taken seriously and an investigation!! My mum also said she had read an article in the paper about a little thing called prolactin (lactating hormone in pregnant women) that if the body has too much this could be the cause of my non-existant periods. The doctor did his thang and I went to be prodded and poked and went back for the results…
“Infertility”….”Brain scan”….fear washed over me and i struggled to take it all in, at 19 who wouldn’t? The scans had shown i had a considerable amount of cysts on both ovaries and that this was down to PCOS. The bloods however came back with 3 times as much prolactin as would be classed as normal in a non-pregnant woman real name Hyperprolactinemia. Now because of this i was told i would be sent for an MRI to make sure that the reason for the hormone elevation wasn’t due to a pituitary tumour (non cancerous and not dangerous but a tumour all the same isn’t great!)…so naturally i went into melt down.
Amazing Parents…
Ok so my mum went back to tell my dad and me and Owen went on a long drive to talk about how i was feeling and just to get away. The prospect of it all was so scary i was a nursery nurse at the time so children seemed to take over my life at this point and my BIGGEST fear was not being able to have them myself, what that would mean for me and Owen realistically, how would i cope with a loss of something that hadn’t even happened yet, what if i had a brain tumour? (i couldn’t even say it out-loud because i was terrified).
All the questions were circling round and round in my head, when getting back home my mum and dad said that we couldn’t wait and they were going to pay privately for me to have the scan done ASAP and for me to see a specialists. Now i know not everyone will be that lucky or have the money to spend but thank the lord they did because the information i gained and the motivation i recieved was mainly down to my endocrinologist (mouthful i know but he deals with hormones, diabetes and thyroid problems) Dr Jude.
So this is the important bit –
I was told to lose weight, i was more than obese and was told this was a major factor in PCOS but i also was advised that it was a vicious circle the fatter you were the worse the symptoms, but actually one of the symptoms was craving food that was bad for you. I was given a GTT (Glucose tolerance test) which tested my blood to see how how well my body broke down sugars (wasn’t the nicest experience but wasn’t terrible) which resulted in being told i had slight Insulin Resistance. My body wasn’t breaking down the sugars properly and this was a factor in my weight gain and my struggle to lose it, i was put on the medication Metformin to help my body digest the sugars properly so my body functioned better. My MRI came back negative so no weird tumour and with the help of the medication and healthy eating and exercise I lost some weight. Recently i have figured out a link between carbohydrates and my weight which makes sense if my body doesn’t break sugars down properly, with this knowledge i have changed my life style to be as low carb as it can be (my mum has done this too losing a total of 3.5 stone! WELL DONE MUM!).
Best Bit…
After going back onto the medication (i had a break of 12months but found it so so so hard to even maintain my weight nevermind losing it!) July 2012, 4 months later I shockingly found out that we were expecting our first little miracle baby! Peyton Anne Bradwell was born in July this year and is so amazing!!! So do not lose hope.
Not to forget…
How I felt… this was an important factor and has made me re-evaluate my whole life including what i eat. A lot of people would say things like “you’ll be fine”, “such and such a person has that and has 2 children”, “but you’re a beautiful person on the inside”‘ these things in my opinion were cliche and meant nothing because no-one could guarantee that i would be fine, that i would have a baby and i would be thin. My weight began to creep up around 17/18 whilst in college, my gran (who was my very best friend) was diagnosed with cancer for the 2nd time and i think that was the turning point, possibly stress induced although my mum had a cyst removed from her ovary when she was only 14. I constantly felt huge, i would exercise 5 maybe 6 times a week for 1 1/2 hour a time focusing on cardio (fat burning) and then weights at the end (toning). My diet would consist of Jacket potatoes with tuna and salad, home made spaghetti Bolognese, and beans on toast – not high in calories (but very high in carbohydrates) but nothing would happen!! To step on the scales made me feel sick and would break my heart every time maybe even putting on a pound or two just to rub it in (before you say it…not muscle weight!). When i first met with my specialist he told me to lose weight as it was a key factor so i took to cutting out carbs which worked amazingly well, i also dabbled (did) a very low cal diet (shakes and water, not recommended, very antisocial…etc) which i think was rather drastic but helped get some initial weight off even if i did put a bit back on. Let your negative feelings turn into positive ones and make that change!
Another thing not to forget…
It is your body and if you don’t get the answers that you want then keep pushing, no-one else is going to do it for you. Don’t take medication if you don’t want to, make informed decisions but most of all don’t think it’s the end of the world, this is you forever but you can be in control of how you deal with all the trials and tribulations. Also it is possible i got the greatest gift in the world (not to be a cliche like i said before).
I so hope this has made you feel that you are not alone, that everything you are feeling and going through isn’t alien and its been quite therapeutic for me too.
🙂 Thanks for reading, hoping to post some low carb food web links to help everyone! xxx
awful i know but if we are to fix this we need to be informed and realistic!
staceey13 