*****PCOS - Anybody in the same boat?******

[fruitloop79]

I don't know if there are any threads already started but I've just officially found out I've got PCOS this morning - I've always known deep down. Please tell me it's not all bad I'm feeling very sorry for myself.
We've been TTC for 6 months - only 3 cycles. I supposedly ovulated on CD36 (now CD43) this cycle. Gynae reckons not preg cos uterus lining would've thickened. (Had a scan this morning)

Any hints/tips on treatment/TTC?
How to deal with symptoms?

How did Posh spice and Jools Oliver manage to fall preg?

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Hi - this thread is a little out of date. We've got some more information on PCOS here. MNHQ

Hi FnN.
Sorry it's all a bit crap for you at the mo. What is the appointment next Tuesday for?
I've been so lucky with my treatment. I had a bit of a wait at the very beginning of the process but have been seen really quickly ever since. My specialist just wants rid of me now - she told me so this morning! But she meant it in a nice way. I'm on my second course of injections; I'm doing them every day now. The last course didn't seem to be working so we stopped and then I had a period which means I must have ovulated about 4 days after we stopped the injections! Typical. Fingers crossed that something happens this cycle tho, if I ovulate but don't get pg I'll have a problem as we're away on holiday in 4 weeks - right when I would be needing to do the injections and go for folicle tracking ... I guess we'll have to cross that bridge if and when we come to it.

How is everyone else?

fruity

Just read all your posts....glad it has worked out in the end!

Typical, I cant get through to the manager. Tried four different extansions. 3 of them just ringing and ringing until the line goes dead. I left a message on the 4 one. I can guarantee I wont get a call back though

Ok, now I've been trying to ring around to get DPs sperm test results. No idea who to call so I rang the Pathology dept of the hospital he had to go to. They dont give out results, I have to contact the place who sent us. So I rang St.George's. I've tried every number I have. Finally got through after about half an hour of endless ringing from different numbers. Surprise surprise, it was another answerphone!!! So I've left a message.
I think I'm going to completely lose it with the 1st human being I actually speak to at that damned hospital. I swear there is no one running it

TG The appointment I got for next Tuesday eve is to see a GP at my surgery. I need to discuss changing Fertility Clinics as I think I might kill someone at St.Georges and I'm not sure I'm the type to do life in prison! lol

Hi Fruity,

Sorry about all the problems you are having. I was just wondering, were you not given a choice of which fertility unit you can go to? I was given a list of five NHS clinics.

Don't let the the lazy lot get to you. You will get there eventually I promise

Moonlit

no choice just told that I was being referred there and the consultant/gynae was fantastic. Who was I to argue! I thought I was being sent to very capable hands. I dont know where else has a fertility dept near me. I tried googling but nothing really matched. It's a pile of crap. A friend on Emmsy's thread managed to get her hands on Clomid almost immediately through her GP. It doesnt help living in London and being sent to one of the busiest hospitals

Fruity Moonlit

I am so sorry to hear about the hassle they are putting you through!!!! It is outrages! Make sure you make a complaint in writing to the hospital.

Like Moonlit said I was also given the choice of hospitals by my GP when I was referred.

Whether I made the right choice, well I sometimes wonder...

Anyway, you are right, there is a total discrepency as to the how easily NHS trusts give clomid. A lady on the CLOMID thread has a bmi of 39 ( higher than my BMI has EVER been ) and yet, she has been given clomid on first request!!!! I am happy for her, but it makes me angry as I am paying sh*tload of tax and NI every month and yet I am not given the same treatment that people are getting in other areas!!!! GGRRRRRRRRR

Fruity - as inconvenient it may be you really should go to another unit as the St.Georges one does sound a waste of time.

GOOD LUCK ALL!

My next appointment with consultant is on MONDAY! Keep your fingers crossed for me that I walk out with CLOMID!

Fruity

Would ask your GP to refer you to a hospital in London with a subfertility unit. Your experience to date with St Georges could be an indicator; if you think its bad now wait till you start going for treatment and tests there!. Look now into going somewhere else; it is fair to say that some NHS subfertility units are far better than others.

Hi Dungangirl,

Just to add that I was not given clomid either but this was because it was determined that I was not suitable to take it. In the meantime the scans and blood tests continued (till they received the funding for the injectible drugs).

Good luck with your appointment on Monday!!.

Hello lovely ladies, just read this entire thread (!) and just wanted to chuck a few things into the mix. I am 36 and have had this wretched condition for 20 yrs. Am 13 wks pg with first baby though! Came off contraceptive pill at Christmas and conceived in mid March - unbelievable, as I had reckoned on 12-18mths minumum.

Before you all hate me, I put this down to the following: Metformin - 4 x 500g a day, which is quite a high dose (1 after breakfast and lunch, and two after supper) and keeping carbs to a minimum. I wouldn't cut them our entirely, a la Atkins as I don't believe it to be healthy; but I DO believe that a traditional low GI diet is still a bit too carby - for me, anyway, and certainly in terms of weightloss. I know some people don't tolerate Metformin too well, but I can honestly say as long as I take it on a full stomach I have never had a single side effect. Maybe I am lucky, I dunno.

I have noticed what a crummy time a lot of you have had on the NHS, which makes me sad and angry (esp the poor poster who has worked so darn hard to get her weight down to be able to get on Clomid, only to hear of someone with a higher BMI being given it will nilly). I know it's expensive, but have you thought about getting just one, or maybe two private appointments? I used the London Women's Clinic on Harley Street - they are fertility and gynae experts, and a long consultation and a scan might cost £250 in total, plus some bloods, say £100, plus one final follow up consultation, say £125, and you will still have change from £500. I realise that's probably the price of a holiday, but you'd get a second opinion and probably a different viewpoint on the whole thing. As for Metformin - a private prescription of three months' supply costs £12. Now that IS reasonable.

Oh, and it's very boring but I joined a gym after Christmas and after decades of resistance, it helped with a)weightloss, but not dramatically I have to admit; b) mood - you DO feel happier after you've jumped about a bit; c) sleeping (I was knackered and therefore less likely to stay awake fretting.

Anyway, you all know all this I am sure, but I just wanted to say - I wholeheartedly believe you will all get there in the end. xxx

DunGun Girl. I think a lot of people hang all their hopes on Clomid and as Attilla has said, it's not suitable for everyone, so don't make that your prime objective. I'll be interested to see what my gynae syas in June, as I don't have any periods at all, so Clomid is less likely to work.

LadyThompson - It's good to hear a success story. I've always been a healthy weight and fitness so unfortunately, I don't think the diet thing is going to make a huge difference, although I have had a go, and been following a PCOS diet for the last 3 months. Still haven't had a period though!
It always saddens me that people have to resort to private treatment. The UK is one of the few countires that offers an NHS system and we pay for it in our taxes. Consequently, we should all be accessing the same system, rather that this postcode lottery that currently happens.

Fruity, you need to change your clinic provider - the service you're getting is just not good enough.

Scoobydoo - totally agree that NHS should be in better state but for things like fertility, one often feels like there's only the sh*y end of the stick on offer, and dipping into the private sector seems a way to speed things up...Have you tried Metformin, though? I was particularly slim a couple of years ago and it didn't make much difference to my (lack of) periods now I think back - but the Metformin did. Also, I am not really the hippy type BUT I do know of someone with absent periods who had acupuncture - and it worked.

Having a bit of a down period at the moment. One of my close friends told me she was 3 months pregnant yesterday. It only took her one cycle and she was pregnant. Sometimes life seems a little unfair. I'm a fit 30 year old who's always been so health conscious, yet my unfit and more overweight friends get pregnant at the drop of a hat. Fingers corssed I'll get pregnant eventually, but there's alwys that thought in the back of my head that I won't be able to concieve. Does anyone else get moments like this?

Right, must try to be more positive and less self indulgent, there are others far worse off in the world.

Sorry for my depressing tirade, but it helps to write it down occasionaly! My next psot will be positive - I promise!

Scoobydoo - I know exactly how you feel WRT your friend. My closest friend from school is expecting her 3rd DC in October. I am truly happy for her but I had to grit my teeth the other day when she was telling me that she was on the pill when she got pg and that her next-door neighbour had a coil and also got pg with her 3rd!! She started to complain that neither of them had wanted to be pg and had been taking steps against it so it was really unfair but she managed to change it round so it came out that life in general wasn't fair - for me as much as her ...
I know she wasn't intending to be hurtful but it was more than a little bit thoughtless

I need my wrists slapped for getting my hopes up. I've been doing my second course of injectable drugs and things were looking really good. I had 2 scans last week and the second one showed a reasonable sized folicle on each ovary and my womb lining was thikening up well. Started thinking that today - being CD14 - there would be at least one nice ripe egg ready to hatch and DH and I could get to it ... went this lunchtime; sat for nearly an hour waiting and then was told that there's one of 5.4mm and one of 7.8mm - the first is about half the size of the one that was there on Thursday also my womb lining seems to have shrunk

I took this news to my specialist and she looked seriously unimpressed as she is fairly certain that it has a lot to do with the abilities of the sonographer. There are 2 or 3 sonographers who are really good at doing t/v scans. The rest are apparently fairly useless ... and I had one of the dodgy ones today.

So, I've got to carry on injecting each morning and go for another scan on Wednesday. If that comes back inconclusive then she's going to get the consultant to scan me himself on Friday afternoon ... we shall see.

Sorry to rant but, like Scoobydoo, it feels better to get it all off my chest.
Hope everyone else is OK today

Hello ladies

Have been away from MN for a few days - family over, weekend madness - the usual!

Had my appointment with the consultant at the hospital yesterday.

Well...I am OFFICIALLY in LIMBO!

I have killed myself to get my bmi below 35 - yesterday it was 33.7 but yet ....as i thought it was for nothing!

Consultant looked through my paperwork, we talked through the miscarriage and the dates, looked at past blood test results...and then she said it.

'THERE IS NOTHING I CAN DO FOR YOU RIGHT NOW!'

WHHHHATTTT!!!!!

I told her that yesterday was a 'point' in this journey and something had to happen to push my efforts forward.

What did she give me? NOT CLOMID? NOT A LAP AND DYE!
A DISCHARGE FORM!!! She bloody discharged me from the subfertility unit! Told me to go and try for another 6 months ( as I managed to get pregnant in Feb ) and then if nothing happens to get the GP to refer me back to them.

I pleaded with her that there must be something she could do, but she was insistent there was nothing. She wasn't prepared to do a Lap&Dye until 6 months time.

OH MY GOD! I think I might jump in front of a bus or something! ( not seriously)

In tears, I was taken into a separate room by one of the nurses - Sharon a lovely nurse whom has always been kind and understanding. I sobbed to her and let it all out. I told her that was it! And that risk or no risk, if the NHS weren't going to help me then I would have to take things into my own hands. So I told her that I already had some 50mg clomid tablets and that I was going to use them as I have to do something! I am NOT willing to sit about and let another 6 months dissappear with no result.

Bless her, she understood the desperation and advised me on the dosage of clomid and the possible side effects and gave me a bit on info.

It is sooooooooooo crap though!

I mean.....what the!!!!!!

GRRRRRRRRRRRR...........................

Dungangirl

Unbelieveable!! and on your behalf.

So you're looking at another year potentially without them doing anything in the meantime (seeing as well as it can take several months to be referred to a subfertility unit). I certainly would not return to this unit even if I was paid to do so. Apart from anything else, having PCOS can put a woman at a higher risk of miscarrying.

I would talk to your GP about your treatment at this clinic's hands and ask to be re-referred to another unit now. I would personally not take the clomid you have - but fully understand that desperate times can call for desperate measures and you feel a deep need to do something for your own self. If at all possible see if the GP will do blood tests whilst you are on the clomid (you need to know whether its actually doing its job or not. It can also markedly increase hormone levels hence this piece of advice).

A laparoscopic ovarian laparoscopic diathermy rather than a lap is one future possible option you should ask about (a lap can be just a diagnostic procedure and would thus not address the problem of the cystic follicles associated with PCOS).

Anyway a HSG (tubal x-ray) is the dye part of the lap operation and this can be done whilst you are awake.

HTH a bit and once again very sorry to read what happened to you.

Attila x

DungunGirl - That is atrocious! I would definitely go to your gp and ask to be referred to an alternative unit. I would also consider writing to the hospital or the PCT to complain. It is ridiculous to make you wait any longer.
I can't get over how different the treatment is in different areas! I was seen by a specialist just over 6 months after coming off the pill (which I had been taking since DD was born)!

Thanks for the advise Attila!

I may try and book an appointment with my GP and see if they would agree to let me have the blood tests.

I also have a friend who is a GP, so she may able to suggest other things I can do too!

Dungun my god! You're having a crappier time than me!
I'm so sorry you're being treated so badly.

Don't suppose your at St.Georges too are you?

OH SH*T!!!!!!! I've just realised I'm supposed to be at the surgery! My appointment was at 7.30! Ah crap. I can't believe I forgot! I remembered at about 4pm then it completely slipped my mind It's too late now I'm hopeless.

Oh Fruity!!
Will you be able to rearrange it? Our receptionists are pretty fierce, some grovelling may be in order ... Really hope you can get another one very soon.

Hi guys

fruity No I am at Royal Berkshire Hospital in Reading. I had always had a pretty good impression of their service there but that is NOT THE CASE now!

I know I should go to my GP and get him to re-refer somewhere else, I might try talking to him next week. This whole roller coaster and abrupt end/stop has left me feeling a little flat and disheartened.

I just think it is so unfair....I did everything they told me to do. I feel like the consultant kept moving the goal post!

She probably spotted me as a potential money saver for the NHS, and dropped me as soon as she had the chance!

Sorry to be so self absorbed at the moment.....

Dungangirl

No "might do" re talking to the GP, just put your best Nike expression on and "just do it".
Make that appointment!.

Attila x

Have calmed down a little since yesterday. Spoke to DH about going private and he isn't really up for it, which I understand.

We have decided that I will continue on my weight loss programme as it can only help. AND in the meantime I will try and find out how expensive it would be to purely go private for monitoring while I am on clomid.

It might prove much too expensive, then in that case I will see whether my GP can provide any assistance.

So feel a little better.

Attila I don't work Mondays - so I am trying to get an appointment then!

Dunngirl, sorry to hear about all your frustrations it seems particularly unfair. Well done for staying motivated and continuing to lose weight, as you said, it can only help.

I had my HyCoSy yesterday which was a particaularly humiliating affair, but I suppose I'm going to have a lot more of that over the coming year! Everything was all clear which is a relief. The consultant radiographer commented on how large the cysts on my ovaries were, which is not a good sign. It explains why I don't get AF though.

Next appt with the gynae is 16th June, I was told I could bring it forward but my OH wants to be there and he can't make it any earlier. Not too long though. I'm a bit worried with everyone elses experiences that not much will happen at this next appt. I will go armed with all the info I can gather and not leave until I have a way forward!

HI ladies

AFter a lot of thought, I have investigated private treatment and am tempted to go private even if it was only for a couple of appointments.

It is £160 for a session and I was told the consultant would not send me away without a proper answer to how I should proceed.

Should I do it? I am not swimming in money....but it might put my mind at ease.....

Well Dungun, I certainly would if I could, go for it lady! You deserve it

If I don't get some sort of answer when I see the consultant for my follow-up in August (scan or no scan!) I'm going to threaten them with getting Clomid from the internet. I wont cos I know it's too risky without monitoring but she wont know that I wouldn't

Oh yeah I think I forgot to say that I finally spoke to someone about my cancelled scan. Apparently (ironically) the sonographer is going to be away on maternity leave! They are trying to get a locum (sp?) in to replace her. So I've been put on a list I don't know what this list is for though, probably a list of raging hormonal desperate women like me
Oh and DP's sperm results take 3 weeks to come through! That's an awful long time isn't it? Blood test results come through in a week!

I've just been out and bought DP some zinc as I'm scared his boys are lazy like him (and my eggs). I'm also worried only one testicle is working cos one of them has sort of deflated , it's been like it for ages although not before we conceived DS.
In fact he asked me (before he went for his test) what I would do if he had zero sperm count. It hadn't occurred to me until he asked. I was just concentrating on my problems. I jokingly said I'd find someone new. Of course I wouldn't but I would be absolutely devastated and probably sink into a deep dark depression. I'm now really paranoid.