PCOS and your fertility.

I’ve was following the Verity twitter feed because they were Tweeting live from a one day conference they held on PCOS and fertility. For those of you that don’t know, Verity is the patient group that supports UK women with PCOS and you can find the twitter feed here :

Here are most of  the day’s tweets in order.

Oh and the abbreviations you might need to know:

FSH = Follicle Stimulating Hormone

LH = Luteinizing Hormone

NICE= National Institute for Health and Clinical Excellence.

PCT= Primary Care Trusts

Here goes:

No increased risk of miscarriage is not greatly increased if at all in women (long-term study from Finland)

one reason miscarriage reported to be higher in PCOS women is due to following pregnancy from very early stage

Hmmm these first two sort of make sense to me and they leave me feeling somewhat hopeful… wonder if I can find more details on this study!?

Follicles get ‘stuck’ in women with PCOS, probably due to abnormal hormone environment & suppression of FSH

Abnormal hormone environment: higher levels of LH, high levels of insulin (in overweight women) & lower levels of FSH

Overweight women who lose 5-10% can see vast improvement in symptoms (Kiddy 1992, Clark 1995, Normal 2002, Steele 2005)

This I know to be true  just from the improvement I saw when I was lighter two years ago as compared to now. Getting my weight to stop swinging from one to the other though… uuugh frustrating!

Clomid has been used for more than 40 yrs as an estrogen blocker to increase FSH levels & trigger ovulation in PCOS women

Clomid has 75-80% ovulatory rate but still has multiple pregnancy rate of around 10%, ultrasound monitoring should be in 1st cycle

Clomid generally not recommended to be under GP in 1st cycle as they don’t have facility for ultrasound monitoring.

Slim women with PCOS generally have surge of follicles with Clomid, so dose would be reduced on next cycle

Women with higher LH & testosterone can be Clomid resistant, not generally given with BMI over 30 & preferable <25

Yikes I’m sitting here with a BMI around 37 and raised testosterone levels, a lot of work to do if I want this drug to have a shot at helping me .

Women with BMI over 30 that have tried to lose weight can be tried on Clomid.

I’m a pessimist I guess. This sounds like a set up for heartache to me :S

Low-dose, step up FSH regimen has been used for more than 20 yrs. typical start at 50 units per day, then 75, 100 and 125

Clomid used on women with BMI >40 *CAN* work but is very rarely successful

Must lose weight Ali … must try harder.

Ovarian drilling is successful but not quite sure why – success rate btwn low dose FSH & ovarian drilling is comparable

Dutch study: conception rate in Clomid & Metformin = 40% … Clomid & placebo is 40%

Nth American study: live birth rate w Clomid & Metformin = 26.8%, Clomid & placebo = 22.5% and Metformin & placebo = 7.2%

Man those live birth rates SUCK 😦 … I say again PCOS you are a bitch with little mercy and feeling less hopeful again

Metformin has a place in reducing insulin levels but not as a line of fertility treatment.

In a great number of women with PCOS, it is possible to restore normal ovulation.

Wonder will I ever be on the right side of these numbers … hmmmm ?

Q: Thoughts on ovulation prediction kits? They are useful but not accurate in women with PCOS due to higher levels of LH

Cervical mucus comes just prior to ovulation. Temperature rise is after ovulation. Egg disappears quickly after ovulation.

Oh for the simpleness of have sex, get pregnant without ever hearing the phrase cervical mucus … Sadly it was not to be.

Q: Clomid ovarian cancer study – thoughts? A: after initial scare, studies have been reassuring… will go up to 9 cycles.

Q: if you don’t get pregnant after 6 Clomid cycles, what’s next? A: Look at low dose FSH injections

Q: Correlation btwn severity of symptoms & fertility? A: Not a lot of difference in rates of ovulation & pregnancy.

Q: what is top end BMI range of treatment? A: >30 if they have lost weight. Not sure if it is weight or nutrition related

Q: Am of normal weight, but even when I put a few pounds on I notice huge difference in severity of symptoms

A: It’s the change in weight that’s important, not the weight itself

Q: if I am in high end of normal BMI – will getting on the lower end of normal help? A: No, it won’t help

Q: Blurred vision on Clomid, can I take FSH? A: Yes you can take FSH

Q: If I have IVF & live birth, w 2nd pregnancy is 1st line of treatment IVF? A: Worth trying Clomid again as things change

Q: vitamin D deficiency in PCOS? A: link between vit. D & insulin resistance.. Normal levels of vit. D can help PCOS women

Q: can I get vit. D test from GP? A: you could, but not sure if you should have regular tests. We need more research & info

Q: is there a min. BMI for treatment? A: European origin generally >19 for treatment, but can depend on ethnicity

In the UK, funding for fertility treatment is very very poor in comparison to other European countries

Suck sucks..SUCKS !

NICE recommended 3 cycles of IVF and it is not progressing across PCTs throughout the country

In the 5 yrs since NICE guidelines came out, services have improved and East of England is providing the best service

Uughh so … relocate to the east of England to give me the best change of winning the NHS postcode lottery. WHEN will our government realize that THIS is not good enough and actually DO something about it…

Impact of infertility is misunderstood… it doesn’t just affect two people, but their friends and family also.

Govt. considering national tariff to set standard cost on IVF and fertility treatment.

GOOD IDEA… watch this space.

http://www.fundingforfertility.com has template letters for you to send off to PCTs and MPs about your lack of funding.

People (infertility patients) need to make a fuss, as PCTs think that people don’t care when fertility funding gets cut.

Mmhumm people who can have kids don’t care … and people who can’t have kids don’t like to talk about it so much. So very sad.

Q: Why do they cut fertility funding? A: It’s an easy thing to cut, as people / public don’t make a fuss

What is the point of NICE guidelines if decision making is made on a local level with no enforcement as to how £ gets spent

Best place to live in London for IVF funded treatment? East London

Delegate got told that wouldn’t get fertility funding from Berkeshire PCT as they lost £90m in the bank crash.

Figures

Q: what are the IVF waiting lists like? A: Good, because we (UK) don’t fund very many, should happen within 18 weeks

Good news for all the wrong reasons.

Q: how much does IVF actually cost? Q: Between £3k and £5k … lower end from £2k plus drugs (= £3k)

Actually this is LESS than I thought.

There is still a stigma attached to infertility, and that our body is letting us down… feel angry, ashamed & frustrated.

Whoo… check, check and check… I certainly feel all of those things on a regular basis.

We don’t realize how many babies there are until you can’t have one yourself & it feels like our life is on hold waiting.

“I felt like everyone else that couldn’t have a baby was dealing with it fine except me”

– Then you should read more blogs you are not alone my friend… not at all.

Infertile couples often find themselves feeling jealous of people / friends / family with babies

There is no doubt that TTC and baby making sex puts a huge strain on relationships

Support (especially peer support) is not as common and forthcoming for men going through infertility

Yeah you know I think the guys have a rough time of it 😦 infertility hurts everyone involved

If you are going through treatment, it’s important to talk to your partner about whether you both attend appointments, etc.

More and more women are turning to complementary therapy, but not as many do and they can be as beneficial

Tell your employer you were undergoing fertility treatment? 1/3 of people don’t as they fear being treated differently

Do you tell friends & family? Consider telling them you are doing it, but don’t tell them *when* you are doing it

Counseling can make a *big* difference in how you cope with fertility treatment – see a fertility friendly counselor

Keep stress down as much as you can… TTC is *very* stressful, but help to lessen that as much as you can (comp. therapy)

Learn as much as you can about treatment, it helps you feel empowered. Main difference is getting support & help

OK, so that’s the lot. I actually learned a few things which is always good for my own part. Mother nature decided to celebrate the fertility event by sending AF to visit me late last night just in time making my last cycle 85 days long. This sucks because until now I had been doing so well – hitting regular cycles of around 32 days. It also sucks because unlike AF’s previous two visits that have been totally pain and stress free, this time things are definitely starting to get a lot more painful and uncomfortable again. Just when I thought I was making a little progress… *sighs* I wish I understood my body better.

Ali xX

Hormones gone haywire … here we go again.

Uuugh… hormones are wreaking havoc with me. I have this oddly out of control feeling like I have too much energy or stress or tension… emotion maybe… goodness knows but it’s making my skin crawl and feel tingly all over right to the tips of my fingers but so much worse in my thighs. I feel shaky and unstable, both physically but mentally too with no idea which extreme of emotion I might lurch into next. All I know is provoke me and I fear extreme reaction will occur – not sure if that will be crying hysterically or screaming like a banshee. I hate feeling this way. Hate it. I’m not right in my own skin. Everything feels awkward and prickly. I have an odd sensation in my head and I want a cuddle.  I need to be held. I need to hold you – only my skin crawls so bad when you actually do touch me I can hardly stand it… and I’m scared if I did hold you I’d squeeze you so tight it would hurt. It’s so confusing… a jumbled mess of rawness that makes no sense and has an oddly destructive streak. I have raging hormones… that mean I actually want to tear some guy apart in a desperate need for intimacy and yet I’m scared to because tear apart is no joke. In this mood I feel the need to bite. And not in a kinky fun gentle way. There is a sensation in my jaw. I bite HARD.  I know this because most times I’ll end up biting my own hand and leaving bruises and teeth marks. I want to dig my nails into something and actually tear it up.  It’s INSANE and overwhelming and to be honest it frightens me. It usually only lasts a couple of days but it feels like forever and each time is just a little different. Today, for example, I’m not getting mad or angry like I have done in the past just SCARED to death with a feeling that something bad is going to happen to me or someone close to me. It’s totally irrational. There’s no reason at all to think bad news is on the way but I can’t shake this awful doom and gloom feeling.  Another new thing for me my joints all are stiff and ache. Not just my knees which is usual for me. My left knee will often go stiff or lock a little and ache its a separate issue but today I have this same uncomfortable tenderness and dull ache in both of my knees. Also my ankles, wrists, the back of my neck, and even the individual knuckles in my fingers. It’s not pain full as such just uncomfortable and achy and a little stiff.   The whole mess is infuriating. My body is driving me insane!

I don’t know what to try next to make it better except hoping that it will pass quickly.

Irritation and perhaps frustration are the words of the day.

As Kayak Man would say  …”Ali I just have to tell your HORMONES they are being a BITCH right now.”

*Cries* I can’t help it !

Ali xX

Doing as I’m told

Gadget Guy says I have to write, so I’m trying to do just that. Something’s been happening with me.   I’m letting things slide again.  I haven’t done my Wii Fit in a good few days.  I didn’t keep up with my health dairy, even though I promised him I would, which makes me feel like utter crap.  Things are sliding and slipping back to a bad place and I don’t know WHY.

At this precise point in time I can’t even begin to reason why I feel God awful…  like spaced/out of it,  not in my own head, somewhat disconnected. its kind of weird. I’m hovering in this odd place where panic attack,  crying fit,  throwing up and passing out all meet…, with no idea which way I’m gonna go really. what I want to do is go and hide in bed, cuddle up with somebody and feel safe  because I don’t feel safe right now. I feel pretty out of control and quite scared.

So the deal between me and this Gadget Guy friend of mine is that I will try to do what he tells me and he won’t ask too much or tease me or push me too much because he knows I’ll just snap and either cry or scream or run away from him and his help.  I’ve done the first thing he asked me: I’ve got my health diary as up to date as I can, writing everything that’s happened to me over the last 3 days. Now I’m doing the second thing he asked: I’m here… writing… trying to make connections and put into words to my jumbled mess of thoughts.

I started feeling bad tonight about half way through my 2 hour First Aid training session (no, there were no gory pictures or recreated wounds that upset me or grossed me out .. so it’s not that). I got a sharp pain above my left eye and a stinking headache. I lost all focus and stopped really listening to what I was being told. My chest was racing.  It can’t have been too bad because I was still able to respond. I got up and practiced all my bandages and did everything I was asked, but inside I didn’t feel like all of me was present in that room. Apparently I looked miserable, so said the teacher who asked if I was ok. Yeah I’m ok; it’s just a headache and possibly a panic attack. Now when I have panic problems the last thing I need is anyone to draw attention to me, so of course i just said I was ok. I WAS ok coming home which might be due to the fact that I was chatting away to a friend on the phone and not really thinking about what I was doing. I’ve had something to eat. I’ve taken all my meds today… and I just don’t feel good.

In fact, odd things have been going on for a few days now. It kind of started on Monday… well actually early Tuesday morning for me. I was watching this weeks episode of Dancing With the Stars over the interwebs and chatting away with Gadget Guy when suddenly I was hit with the most awful cramping.  I mean bent double moaning. Total surprise. Comes out of nowhere and takes your breath away PAIN. It was intense but didn’t last long at all.  In fact it was over by the time the show finished and all I was left with was a dull ache like that part of my body had been through something. I thought nothing of it. I slept ok and woke up fine.

Woke up fine mmhumm… did not stay that way.  I was an emotional mess yesterday,  in fact I count the damage as 1 emotional meltdown to the point of tears over something stooopidly silly. I’ll tell you about it sometime but it probably merits a post all of its own.  This was before I came online and spent the afternoon getting more and more frustrated to the point of tearing my hair out and throwing a hissy fit in Gadget Guy’s face. Actually I’d say I snapped at him pretty effectively. Let me just explain… we’re those type of friends that are close enough  and know each other well enough that we bicker and tease ALOT… its just how we are. It’s not hurtful or mean. It’s just what we do.  Yeah, admittedly yesterday we spent a large amount of time talking about the few things that cause tension between us and that always makes me (needlessly) nervous and stressed. I mean, if we were gonna fall out over anything, what we were working on yesterday afternoon would probably be it… and I just don’t want to fall out with him. Somewhere in the middle of what we were doing I was hit by a wave of the most awful fatigue. I mean seriously it’s like going from fine to exhausted in less than 60 seconds. It SUCKS. Again, trouble focusing, all over body weakness and so so tired beyond tired. I get over sensitive when this happens.  Repetitive noises bother the hell out of me.  I mean like drive me demented. Must find them and make them STOP NOW  or I may start smashing things. Loud noises are bad. Music is awful… and all that playful teasing we were doing  becomes totally not fun anymore. It feels like it hurts and he’s pushing me. God damn it this guy is SOOOOOOO FRUSTRATING!!!  I had to walk away… HAD TOO. Now let me say it was not his fault. He wasn’t doing anything that is not normal behavior between us and we both were laughing about it, me through gritted teeth admittedly. He wasn’t mean or abusive (pffft Gadget Guy getting abusive LMAO that notion in itself is just so silly it makes me laugh) it was My Problem, hormonal or otherwise. I don’t know.

So cramps Monday… moody, irritable and suddenly exhausted Tuesday… and now this near panic attack, moody… about to throw up/keel over thing tonight.

WHAT the HELL is going on… and HOW do I get it back under control!???

There… I’ve done what my good friend asked of me ….can I go to bed yet?  Without CRYING my eyes out and embarrassing myself if possible!

I feel so broken.

Ali xX

Metformin and gummy bears.

I’ll be starting on Metformin as of Monday. I need to start with one 500mg dose in the morning with breakfast (which means I had better get a lot better at eating breakfast and quickly). I’ll be eating my oats like a good girl every morning just so I can take the pill despite the fact that I’ve really struggled with the whole food thing recently. After 7 days the dose doubles to 500mg twice a day morning and evening. The drug has been shown to help women with PCOS controlling the effects of insulin resistance.   It has been shown to help women suffering PCOS with losing weight and even returning to a regular cycle.  Here’s hoping I’ll see some good results from it.

As with all drugs there are side effects. Last time I took this I felt so sick the first couple of weeks. It was terrible, feeling ill.   The most common adverse effect of Metformin is gastrointestinal upset, including diarrhea, cramps, nausea, and vomiting. Apparently this affects more than 1 in 10 patients to some degree (that’s according to the leaflet accompanying the drug. The previous time I was taking Metformin things seemed to settle down for me after about 2 weeks. I really hope that’s the case again! The drug is also hard on your kidneys and liver.  The information I’ve read STRESSES the importance of drinking plenty of water while on Metformin (OH BOY this could be a SERIOUS problem for me) other recommendations are NO Alcohol and to try and stay away from over the counter drugs that may also be hard on your liver & kidneys.  It’s advised that people on the prescription should have blood work to monitor liver and kidney function and I am slightly concerned that this never came up in the 10 minutes I was with the doctor the other day. Seems kind of important to me.

So over all, I need to cut the booze (I’m not really a big drinker anyways) and work HARD on the water thing!!

Along these lines … I’m super pleased with myself today for taking a step towards being more organized with my medication at least. I found myself a little pill organizer (or as Kayak Man likes to call it my pill Filofax) with compartments for morning and afternoon medication and set up a full weeks pills in advance. I’m hoping this will not only help me to remember, but more importantly I’ll never have that stooopid moment of wondering if I took my meds yet today. Again.

Any good behavior points I may have awarded myself are totally and utterly wiped out by the fact that I ate half a packet of Haribo Star Mix though I can tell you I feel sooooooo guilty. These things are technically not MAOAM’s the annoying sugary sticky messy things I haven’t eaten since I gave them up in this post,  BUT  the problem is that I only started eating the MAOAM’s in the first place to STOP myself eating WAAAAY to much Haribo. Today I gave in and I didn’t even ENJOY it. I feel bad. From now on, I declare a blanket ban on all sugary / jelly /gummy sweets … and instead when I want a sugary treat I will go for the chocolate that I actually ADORE. Even then I’m making an effort to switch to mostly enjoying dark chocolate in smaller quantities.

I’ve decided to change around my reading goals a little origionally I had set myself the goal of reading one book for pleasure each month but while I was over at Kirstin’s blog I decided instead to join in with her Book challenge 2009.  The idea here is to set a goal for the entire year as opposed to month by month. I think I’ll be much more likely to stick to this and it’s more fun when other people are doing this too.  I’ve set my target at 36: that’s 12 fictions books (one for each month as per my original plan) but I’m also adding that I will aim to read one non-fiction book for every two months.  Now, granted, 36 books seems like a low target compared to the others in the group, but having dyslexia I make  redonkulously slow progress. Anyways,  look for my I’m reading page to be updated with the books I have read so far this year as well as links to the others taking part.

I have this really odd urge to make a roast chicken dinner (don’t ask me why – I dunno!)… So I’ll be doing that tomorrow or attempting to I should say… Wish me luck!

Ali xX

K.S. Getting hold of the T.V. remote for an hour so I could watch NCIS for the first time!

Can I have a word… Doctor !?

I hate doctor’s appointments. Really really HATE. I’m not too sure who is to blame for this; either the NHS and their stooopid 10 minute appointment time  or the individual doctor,  but either way I came away from our brief encounter today feeling down right depressed and pretty worthless. I didn’t actually get any of my questions answered. I still don’t have any explanation for the things I don’t understand that are going on with my own body. All you seemed interested in was whether I was about to collapse and die today.  If the answer is no then I should just STFU and move along. At least that’s how it felt! You failed to even look up from typing away on your laptop ONCE during the whole ordeal.  So I’m there trying to have a conversation about some quite personal issues and I feel like I’m interrupting. THAT’S NOT RIGHT.  OK, so, granted what you were actually doing was making notes, but, hay doc, for all your intelligence I’ve got to tell you EYE contact works wonders. I’m human just like you, ya know! FFS I’m the one who’s actually dealing with this on a day to day basis. When you ask me what the issue is, I expect you to acknowledge my response at LEAST. Maybe even let me finish my sentence before you cut me off with some dismissive remark. I know you may see people in much worse states than me so to you this seems like nothing but it’s a big damn deal to me. Right now my health is making my life hard everyday.  I want to fix it, but I need advice and help support from someone who supposedly knows about these things – someone like you. It takes a lot to even get me in your office, so if I sat in front of you, give me some respect. Please!   Now I feel totally worthless another number. a statistic. A piece of meat. An item of curiosity. I’m so MAD.  I don’t feel like going back. Was that your aim!?  Because I tell you  3 months ago that’s what I would have done crawled back into the hole I came out of and not seen a doctor again for a good long while, but I’m different now.  I’ve got my fighting gloves on and I will not give up. I’m going to get control of this thing with or without your help but I sure could use you on my side.

Despite being told to wait till yesterday for my appointment so the new surgery would have my notes, I got there to find that you had no such information which makes both of our lives miserable. So when I asked about counseling, I got a shrug. I asked about medication for PCOS and I got a prescription. Oh and then I got showed out the door because obviously I was only there because I wanted pills. For God sake what will it take for somebody to actually sit down and explain things to me in a way I can understand? What do I have to do just to feel like someone is honestly listening when I talk and not thinking about the previous patient or what they are going to have for lunch? I need somebody to look at the whole picture here, not just how I feel in the 10 minutes I’m in your office. IS ANYBODY LISTENING?? DOES ANYONE ACTUALLY WANT TO HELP!??

And another thing… if  as it appears you have no clue what PCOS actually is or what the best advice for me might be, could you at least make some attempt to either find out or put me in touch with somebody who does know?  is that too much to ask? Don’t fob me off.  If you don’t know – SAY SO. I won’t think any less of you. Honest. Until 2 years ago I had no clue either!

Oh and thanks so much for the last minute referral to the diet & lifestyle clinic.   an appointment time given to me on a scrap of screwed up paper that looks like its a rude note that’s been passed round a class room a few times before it got to me. Thanks. That made me feel just great. Yes I KNOW I’m overweight. Yes I know it’s not good for me… believe it or not I want to do something about it to. UH HUH I care. I’ve tried so many diets before I can’t even list them all. Does the person running this clinic actually know what PCOS is? Will they be able to help me control it with diet… or will they just be another person who see’s my failing attempts to lose weight, assumes I’m lazy and looks down on me?. Because, seriously, I’m not sure how many more condescending clueless people I have room for in my life right now.

Your very frustrated and desperate patient

Ali xX

Lotions, potions, pills … NEEDLES ?!

I finally got myself organized and out into the sunshine today to take my registration forms back to the new surgery, so I now OFFICIALLY have a new doctor (at least I will when the Practice Manager comes back from holiday and puts my details on system,. but I have faith.  Part of my new positive thinking drive). So, don’t let me forget I need to call and make my first actual appointment on Wednesday morning around 8am … 8am?!!  Some nights I’m just crawling INTO bed at 8am… so far I’m feeling good about the change. It looks like I might be able to get counseling and dietician appointments at the same place, both things that are on my list of actions I think I need to take to get on top of the health situation and stay there! (The list… that I actually have to write down ON PAPER before Wednesday with a list of questions /concerns too!) Yes, I may actually be doing more preparation for this appointment than some of the exams I have taken in my life.  It may seem crazy, but I’m trying this new approach as a “head fake”. You know, a way to convince my brain that I am confident,  I know what I need and I can admit what I don’t understand  NOT… NOPE… NOT at all worrying myself silly about talking to a doctor I don’t know and telling them all this stuff that I really don’t WANT to share. My brain is not convinced yet… must write list .. MUST write list!  

I’ve been offered counseling before but it’s never really worked out for me. I find the idea that I’m expected to open up to someone I just met frankly quite laughable… (As you can see from the slightly neurotic nature of the above paragraph). Truthfully they would probably gain more insight from reading this silly thing than physically talking to me.  Previous attempts have been epic failures where either we’ve sat in awkward silence the whole time twiddling our thumbs as I proceed to read every single information poster, picture, even the titles of books on a book shelf, just to avoid eye contact while trying to use the power of my mind to make the phone RING so they can talk to someone else OR the opposite approach – I give my standard reply “I’m ok” followed by “no, really, I’m fine.” I go off yakking about something totally random… we end up laughing and… and they wind up agreeing with me “you’re fine!” we shake hands… smiles… have a nice life  and I never have to go back into that awkward uncomfortable place where someone might actually see me FAILING to deal with stuff  and call me out on it again…YAAAY !!!

*head -> desk* Have I told you that I majored in drama? ACTING…its WHAT I DO!   I’m really good at faking it… really good at plastering on a smile when I need to… putting on a mask… not revealing anything… showing you the side of me that IS OK…  and if you don’t know me well enough, like, for example, if we just met that afternoon – my experience is you won’t pick up on it, unless of course your reading this and I just told you.  If you are, let me tell you something else: there’s this whole other side of me that’s not coping, and if you bought my performance, that part of me is laughing at you and I’m not  make any progress.

Speaking of tangents… I had this really nuts dream last night. I went into space on a school trip to some settlement that looked like a cross between a dive bar in Star Wars and a motorway service station.  I was struggling to breathe and dying of heat, searching the gift shop for the “I’ve been to Saturn” fridge magnet without success. My subconscious obviously liked something about that Shuttle / Space Station discussion I was having with Gadget Guy… analyze that… on second thought –  don’t 😛

So, yeah, decided to give counseling one final chance and this time I will actively TRY to disable my own defense mechanisms.  I don’t hold out much hope but at least I will have given it a shot.

 As for the dietician, well I need to get this diet / exercise thing going but there seems so much to consider with trying to manage PCOS, depression… and lose weight.  I think I need professional help and guidance.

Enough of that for now. On to some reading I’ve been doing lately about the benefits of acupuncture treatment for PCOS. Now given that I am deathly afraid of needles in a eeek eeek eeeek…OMG I can’t look! Hide my face in my hands and squeal like a 5 year old kind of way. I cannot believe I’m actually considering this, but I’m so desperate for improvement, I’ll try anything. Still more reading is needed because a large portion of my mind is still saying “you mean needles… SEVERAL of them… YOU HAVE GOT TO BE KIDDING ME!”

 While I was doing this research today, I found a couple of links may prove useful:

The first is the link to the UK patient support group Verity. I still haven’t made the final decision to join yet, but they seem to have support groups set up in a few areas around the UK as well as holding a few national events open to all members. Their nest event is on 28th of March in Birmingham titled “PCOS Emotions Workshop 2009”

I even have this speck of an idea that if there’s not a support group in my area, I should go ahead and start one.  On the other hand it could be that the boy I live with and his passion for wild / crazy / hair brained schemes is rubbing of on me.

Are any of you already members, if so has it been helpful / worthwhile? 

The second link was a site I found selling supplements related to PCOS. It’s well organized; all the products are listed under the specific symptoms they are thought to help. It’s called PCOS Online. To be honest I find the amount of possible supplements a bit daunting. I’m only just starting out my research and I think I’ll consult my doctor before going on a shopping spree, lest I do some harm with a toxic combination or something, but if you’re searching for something specific it may be worth a look.

I feel like I’m only seeing the tip of a huuuge iceberg of information out there. There’s so much more to read, consider… BUT it feels so good to be doing something. I actually feel like I’m learning about myself mentally and physically.  I just have to accept that it’s not just my personality that makes me high maintenance.  My body is that way too.

Ali xX

K.S. I’m not alone .. and there’s help out there !

Infertility bites.

Lost… alone… overwhelmed… feeling like I could break down in tears at any moment. I’m weak today. Sometimes I have days like this when the world seems so big, impersonal and unfair.  I feel invisible even when people are around me, like I can’t connect with them somehow, as if there’s an invisible barrier between me and them like a comic book force field or a pain of glass. I can see the world I know. It was sunny today. I heard the bird song through the open window.  I even went out, even if it wasn’t to the beach like originally planned. Nothing particularly bad happened.  There was no catastrophic event.  No panic attack. I ate all my meals and I slept just fine last night.

So, why do I feel so numb… why did I come home intending to tidy the bomb site I now call my home and find myself completely unable to act –  not knowing where to begin. time just passing…

PCOS makes me tired. The list of problems and challenges feels so big that some days I can’t see the point. I often think what I would give for one day off, one day without having to worry. if people can notice the stubble yet or face the automatic assumption that I’m lazy and I don’t care or that I must be killing myself with junk food when nobodies looking just because I’m overweight if one more person tells me (hmm you’ve gained a little or thinks its ok to poke my stomach ‘cause they’re just “playing” I’m not sure if I’ll collapse in a heap or scream blue murder).  I wonder what it would be like to watch kids paying in the park or a mum with a new baby and smile… without the twisting feeling inside. The pang of envy that comes from knowing that nobody will ever laugh watching me with my child. I want to feel happy for them, to giggle at a toddlers never ending curiosity, to hear parents stories of sleepless nights, nappy changes, temper tantrums, even morning sickness, swollen ankles and labour… take for granted that one day I can share my stories too. It’s only been a couple of years since I was this way, but it feels like a lifetime ago.  Now every memory is tainted and leaves a bitter taste in my mouth. I fear that its quietly destroying my soul making me a bitter and jealous person that I don’t want to be.

I’m 26 for goodness sake.  I should be out there enjoying life – partying, traveling, and going on crazy adventures. Ok maybe just holding down a job and trying to make a home for myself with the occasional dash of excitement.  Instead I already feel like I’m running out of time… it seems so difficult to make anyone understand I’m infertile. It’s just a fact to them.  They feel sorry, they say things like well maybe IVF, maybe adoption… or that its awful  unjust… and even what a good mother I would have made and they move on. Why can’t I move on?  I feel like I have a gaping hole inside me that will never be fixed or filled and the prospect of papering over the cracks for the rest of my life is just unbearable.  Is it crazy that I sometimes wish I had some horrific injury, some scar  or cut or piece of me missing  just some physical representation of the hurt the sadness that is always with me… would being able to see make it easier for others to understand ?

I’m not TTC. I’m not even in a relationship where we’re thinking about it… but how do I face telling a future partner that being with me means giving up being a dad? How can I expect someone to choose me over that? 

This is the underlying issue for me next to this loss of a dream.  Sometimes everything seems so trivial… extra hair is awful, it’s embarrassing and my weight makes me feel ashamed. The list of nasties that we’re at extra risk of is as long as my arm and none of them are pleasant or easy to deal with. The period pains bring me to my knees and when I don’t get them I FEEL WORSE.  I don’t really feel like a woman – feminine or pretty are words that are used for other people unless you’re trying to make me laugh or taking the piss.  As for sexy… don’t even ! 

But I’m sure I could cope with all this… if only I could see the words “I love you mommy” somewhere in my future…

Hell… what am I talking about … I cope… I have no choice… and I don’t feel this way everyday. I’m not always thinking about it… I laugh, I smile, I have fun and I enjoy things just like everybody else.

But then there are days like this… alone, overwhelmed. I just want someone to hold me. I want to let go and cry again but somehow tears don’t come to stop my thoughts from racing.  maybe I’d  feel a little calmer so I can remind myself  that I’ll never find a new purpose  for my life if I stop looking .

I tried to call a few people but for one reason or another tonight they were all busy with their own lives… not that I begrudge them that one bit. The world does not come to a grinding halt ‘cause I’m having a bad day thank God because nothing would get done around here.

Ali xX

K.S.: things can only get better…