A Verbose PCOS Story

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

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A Verbose PCOS Story

Postby azadi » Fri Feb 14, 2014 12:30 am

(AKA A Midnight Rambling With A Few Questions Tacked On The End)

A Very Verbose PCOS Story

I have spent the last seven years reading countless articles, journals and scientific dribble about this condition. I have of late found myself spending hours pouring of metadata, scouring the corners of the internet for some remedy to alleviate the gut wrenching spasm in the pit of my stomach that I always get when someone tells me they’re pregnant. At 17, when I was first diagnosed with PCOS, it didn’t matter. At 17 you think you’re invincible, you think the world owes you everything, and that children are in a distant and hazy future that hasn’t come into shape yet; I crave for that invincible armour of youth now. But back then in my naviety I neatly folded this news of PCOS, and treated it like an ill fitting garment; pushing it to the back of my mind; only to take it out and look at it casually every now and again.

Now in my mid twenties I see the years have crept up on me, and that the garment is slowly beginning to take shape about my persons. It seems that somewhere along the years, as time is wont to do, I grew up. Grew out of the child’s armour, I graduated, I got a job, I got used to all the mundane pleasures and security that adult life offers, and it is now that the full scale of the monster that is my condition has decided to unfurl in my minds eye. It has reared its ugly head and taunts me my every waking hour. It haunts my footsteps, chokes me in its vice like clutches; I feel its reeking breath coil around me and consume me in its poisonous fumes. It leaves me waking up in the middle of the night in sheer despair. It is then I find myself coming here seeking solace. Over the years I have come across this webpage many a time. I have dipped in every now and again but never really had the courage to join, but today I took a leap of faith, and after three hours of reading, I am so glad I did. Between these boards and topics I am beginning to piece together an antidote for my ailment. I have found hope.

It seems like a rather verbose introduction I know, but these are emotions that have been swelling up inside of me for so many years, and having just read so many incredible stories of other women who have overcome this condition I’m just overwhelmed, and I guess the narcissistic part of me wants to share my own story, or rather the beginning of my story. When I was diagnosed at 17 I was an atypical patient in the eyes of my GP. I was not overweight and I didn’t show to have the associated cysts on my ovaries during the ultrasound. However my blood analysis told a different and telling story. I was found to have a high testosterone to progesterone ratio, as well as the traditional symptom of hirsutism (to be fair being Asian this isn’t an unusual phenomenon). I was put on Dianette to control my grotesque hairiness as well as to tackle the amenorrhoea. For three years I suffered from irrational bouts of mood swings, and gained not necessarily a substantial amount of weight, but enough to make me feel uncomfortable about my apperance. At 5 ft 2, living in a lifestyle exclusively dominated by the way you look (not to mention in the shadow of a stunning (albeit kind hearted and empathetic) older sister), in the eyes of many of my so called friends, and loved ones I was not a pretty sight to behold. My confidence took a slamming, and I fell very quiet and moody and distanced myself from most people. I gave up on all hopes of a happy ending; of finding love and settling down and having a family of my own. I became a cynic; the sort that you find in good books and terrible films. When I graduated, I fell into a cycle of depression. I couldn’t find a job, I was stuck in a rut, with a very bleak outlook of my future.

Had it not been for my mother, I fear my life could have taken a very different turn. She soothed my worries, she scolded my irrationalities, she chased away my demons rolling pin hand, and told me she was fed up with my mopeyness for the last three years and told me in a way that only a mother can, that doctors know only so much, and sometimes, just sometimes you just need to have a bit of faith. It was at that point I made my decision. I had had enough of the surly young woman I was turning into, and decided to visit my GP to see what else they could offer me. I briefly tried Yasmin, but found between the totally unladylike way it made me gassy, and the fact that it had no impact on my hirsutism it wasn’t the one for me. Finally I settled on Rigevidon. It didn’t make me less hairy, but then again it didn’t make me gassy or cranky either. In my book that was a winner. I felt as if a veil had been lifted off my eyes and I could see through all the rage and fury to all the beauty of the world I had missed. I felt like myself again. I lost weight, I smiled, I laughed, I got on with life. I got a job as a Medical Representative and felt as if the puzzle of my life was getting easier and easier to piece together. My sister gave me money for 6 laser treatments to control the excess hair, and whilst it hasn’t stopped it completed, I definitely feel a lot more confident now. I eventually invested in my own home laser set which has completely revolutionised my hair growth. I don’t think I will ever be hair free, but I definitely feel that at least now my hair growth is womanly, if there is such a thing… My Mother told me not to worry about the future; to cross the bridge of motherhood when I came to, she told me to just enjoy my life and live it day to day, as a tomorrow wasn’t promised to any of us. And for a time that was exactly what I had been doing.

I have always believed that the threads of our lives stretch into the distance; and where they touch and mingle and meet with others can never truly be seen. How one thread can overlap so intimately at one time, only to fray away into a different future, a different reality, we can never truly know until it has come to past. Or quite conversely, how one thread so unassuming, yet so totally awares can hover, never quite touching, never quite meeting, but it is there; totally and utterly present and committed. You can never know how that thread can one day coil around your heart so reassuringly you are hard pressed to remember how your heart ever actually held itself together without it. And so it happened with me; on the eve of my brother’s engagement in August 2009 I went to a BBQ at his best friends house. I went, I laughed, I danced, I ate a chicken wing (in fact on good account I’m told I hogged the entire plate all night). The same account tells me in all seriousness that our eyes also apparently met, causing him to spill 7 up on his jeans; that for a moment my eyes looked away from whatever mirth had otherwise arrested my attention and locked onto his for a brief second. He tells me they sparkled with laughter, only to look away again too soon for his liking. The moment stays with him for two years, though I have absolutely no recollection of it. I fancy the account makes it up to tease me when he does tell me about it two years later, and though I shrug it off as a second hand chat up line by someone whom I know by now has had a reputation with women, I can’t help but shake the feeling that there is a colour of truth and sincerity in this apparent grey cliche he tells me. The moment passes, rests, incomplete. For two years it lies undisturbed in his memory, waiting for fate, or kismet, or perhaps just for life itself to breathe into it the rest of its meaning.

In October 2011, we meet by something I now believe has to be more than chance, and this time at least I remember him. The intricacies of this love story are too long to be detailed for now, and though they are wholly interesting to me, I don’t think everyone will share my enthusiasm…It is enough to say that when my brother’s best friend decided to settle down with a bonny Glaswegian lass, it was utterly unbeknownst to me, that a trip up north would set into motion the events for the rest of my life. When I look back, I know with every fibre of my being, that as cringe worthy as it sounds, sometimes when you let go of the illusion of being in control, everything in life will fall perfectly into place. The story of how a perfect stranger who attended his cousin’s BBQ in 2009 ended up vowing to be my perfect husband in 2013, is one I hope to tell our children one day. And it is that hope, that desire that pushes me to cross the bridge into Motherhood. It burns swift and fierce as any fire does; a desperate longing to hold something that is made up of a mere 23 chromosomes of him and 23 chromosomes of me. It is a desire to struggle to achieve what happens so naturally for other women; it is a hope that one day I will not look at them with envy. I can cope with the hairiness, I can cope with the prospect of Type II diabetes, I can cope with one day potentially becoming overweight, I would cope with it all if I could just know that one day I will have a child of my own… This group gives me that glimmer of a future, and I look forward to sharing my experiences with you all, and if along the way what I happen to say can move even one woman; can comfort even one depressed teenager, than that in itself isn’t a wasted effort…

Having finished my course of Roaccutane at the end of May 2013, just in time for my wedding in June I stayed on Rigevidon for the requisite 4 months post treatment. I stopped taking it in November, and since then I haven’t had a period, which is fitting with my syndrome. I am now looking to conceive. My GP has agreed to send me for a referral in May given my condition, and the fact that my husband’s semen analysis is fine on grounds of motility and count. I just wanted to know what exactly can I expect at the referral and are there any specific questions that I should ask my consultant? What advice do you have for someone suffering from PCOS when trying to conceive? My BMI is 21.58. I eat a varied and balanced diet, and I exercise already. As far as supplements go I do try and take a vitamin when I remember, but other than that I don’t take anything else… Should I start taking Folic Acid supplements? I feel like up until I was trying to conceive my life was carefree, but now I feel constantly stressed all the time about if I will or won't conceive. I feel so helpless, and I suppose I just need some more positive stories, and successes just to keep me focused that if happened for all of you lovely ladies, then surely why can't it happen for me...
azadi
 
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Re: A Verbose PCOS Story

Postby Hols969 » Fri Feb 14, 2014 6:48 am

My goodness what an introduction .... Welcome to verity!!! All I will say is you can and will have children of your own, it is extremely rare not to conceive because of pcos. I would start taking your temperature to see if you are actually ovulating as you don't need a period to ovulate and we have had lots of ladies conceive without one. It does vary hugely between nhs areas as to what is done next. Some are given clomid straight away some have their tubes checked first, this, in my opinion, is a better route as there is a time limit with clomid. Your body sounds in good shape to conceive and it's good your partners sperm is good as well as lots of us have had that issue as well!!

It can sometimes take time to conceive for us, it took me 3years and Noah has just turned 8. I couldn't do all the fertility stuff again as I found it so depressing and was blessed with Noah. It will happen, you just need the patience of a saint some times!!

Good luck, let us know how things go.
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: A Verbose PCOS Story

Postby azadi » Mon Feb 17, 2014 4:24 pm

That's a beautiful name for your littleun and one that hubby and I have often considered ourselves for the future, if and when it should ever happen for us =). Thank you for your encouragement and advice. I have started taking my temperature, as I have noticed I do tend to get really hot at certain times of the month, especially at night. I'll chart that for 2-3 months so that I can have a record to present to my GP. Do you think there is any merit in using Ovulation Kits as well? I've spoken to my doctor, and she has told me that she will give me a referral to a specialist in June, so in the meantime I'm just waiting to see what happens naturally. I'm also waiting on the results for a blood test checking to see whether or not I have Type II diabetes, because although I'm not obese, I did have a bout of recurrent thrush which despite anti fungal treatment has persisted. There isn't any conclusive scientific evidence for a combination treatment of Metformin and Clomid, but I have read many first hand accounts of women conceiving successfully on this type of therapy, so I might speak to the specialist in June about this... I suppose it is now all dependent on what my blood tests say =S...

Did you happen to conceive Noah naturally, or were you put on medication to help?
azadi
 
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Re: A Verbose PCOS Story

Postby Hols969 » Mon Feb 17, 2014 4:35 pm

Noah was conceived via IUI, I tried clomid, had a laparoscopy and loads of other tests. We had 3 IUI's on the NHS and 1 IVF, luckily we conceived 2nd attempt with IUI.

As for OPK's - well some ladies do say they can help but don't buy any of the expensive ones, I think you can get cheap ones on the internet that some ladies use along side temping but they can be hit and miss whereas temping is more accurate (but more of a faff too!!)

Metformin has many doubters as to if it works with PCOS unless you are insulin resistant, our Verity advisors say it is a very tiny per cent of pcos ladies that it can help but generally they do not recommend it being used and feel it is given out a bit willy nilly tbh. You also have the issue if you do conceive and are on metformin, there is so many differing opinions on what to do when pregnant, if you should continue, if you should stop it, that is a bit of a nightmare really so I would try without initially. If there were fixed guidelines on it it would help!!!

The one (and only!) advantage of pcos is our egg quality remains better for longer, I conceived age 36 so you have plenty of time before you need to start worrying about the ticking clock thing in case that is at the back of your mind as well!!
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Re: A Verbose PCOS Story

Postby azadi » Mon Feb 17, 2014 4:58 pm

In all honesty that is one of my biggest worries and motivators to start conceiving, so what you've just said is highly reassuring. Whilst I'm not particularly old having just turned 25 in December, I figured if it's going to take a few years to conceive I may as well start now. Hubbby is 29, 30 in June, and his tests are all a ok, so I'm hoping within 3 - 4 years we'll be successful. As soon as the test results come back, I think I'll be in a better position to discuss with the doctors what to do moving forward. It took 4 attempts to diagnose me with PCOS when I was 17, and over the course of the years I've found that being direct and having a bit of knowledge about the disease area gives you more of a credible position with the GPs otherwise they tend to just fob you off... If my blood tests come back positive for IR, then I presume M.fmin is the most logical therapeutic option, despite me not being overweight, but it may kick start my periods and ovulation... The more and more I look at my eating habits the more and more I am convinced that when I get my results tomorrow they're going to indicate IR, which whilst an issue in itself, is relief because at least it gives me more of an understanding of the treatment options available...
azadi
 
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Re: A Verbose PCOS Story

Postby Hols969 » Mon Feb 17, 2014 5:02 pm

Yes it would be metformin, ask for the slow release version as its a bit kinder to your tum as well (so you don't need to be in striking distance of the loo!!) It is more expensive so is not very often suggested so most don't realise there is a slow release version as well and put up with the terrible sh!ts !!! Let us know how your test results go.

Oh and you have 15 years before it starts to become an issue with TTC so put that to the back of your mind!!
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: A Verbose PCOS Story

Postby nailynsey » Tue Mar 18, 2014 2:17 pm

Hello Azadi,

I must say you are a women after my own heart :mrgreen: that was a beautiful story, I love poetry and found that to be very poetic! I must say all that you have said about having the condition is pretty much everything I am thinking now. As mine was a fairly recent diagnosis it's all abit raw in my mind. After getting married on Feb 14 this year at the tender age of 23 year I am very much anxious about what will happen with us in the situation of children. I am sorry I cannot answer any of your questions I have soo many of my own but just don't know where to start. I do hope you find some emotional relief from it all and I just wanted to send you a message to say how beautiful it was and it was everything I feel (minor the parts about your life) I just didn't know the words to say it. Thanks for voicing it for me :) x
nailynsey
 
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Re: A Verbose PCOS Story

Postby azadi » Thu May 01, 2014 6:17 pm

Hi Nailynsey,

I feel a lot more calmer actually having blurted it all out =). Went to see a Gynaecologist today who has opted for the Clomid route. Have been Rxd Norethisterone to induce bleed, and then am awaiting an ultrasound just to check out what's going on exactly downstairs. Then she's told me I can start Clomid straight after so hopefully June time... 3 months worth of medication and then a follow up appointment in September to see what happens. All it is now is a waiting game to see what happens, but fingers crossed. Am takinging Hols969's advice as well and am eliminating complex carbs out of my diet - I can already feel a difference in my body... Did have two natural bleeds for the month of Feb and March, but not so lucky in April- just seemed to have gone AWOL... Am hoping the Clomid and carb-free diet will give me a positive outcome =D!!
azadi
 
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