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

Good Evening Ladies,

Welcome littleladypop and janeandben DungunGirl - Yes you are right we have a lot in common. I live in Buckinghamshire by the way.

Well, my DH (NOT!) was supposed to take in a 'sample' yesterday but got in a strop the night before and refused to go. Sometimes, I don't believe he is 7 years older than me. Anyway he apologised and is going to next Monday. I guess the stress is getting to both of us. Sometimes, I get lost in my obsession to conceive, that I forget this whole process affects him too!

Anyway, my hubby has private insurance, and the customer service lady told him to say I have stomach cramps, to be seen privately. How naughty!!!! Well I have my NHS appointment at the end of the month. I am so worried. God knows what the consultant is going to say. Here is a summary.

1. I have PCOS
2. I lost weight and conceived DD1 two years ago.
3. I am now overweight
4. Have been taking Metformin since last year and have lost a stone.
5. I have regular periods (30-35 days. Bleeding lasts 10 days).

Any advice? My GP says there is a high chance, she will prescribe me Clomid anyway.

I HATE PCOS!!!!!

Hi
Thanks for inviting me over here FruitynNutty, I had seen this thread but you all seem to know each other so well, it felt a bit daunting to join it! But I've taken the plunge now!

I am 30 and have a DS aged 4 conceived after a year on Metformin and 2 months of Clomid treatment.

After his birth I went back on Dianette as he was extremely premature and poorly and another baby was the last thing on my mind. Just came off the pill last month - am now on CD15 (although I don't have regular cycles so I will give up using cycle days soon!) and am going for regular reflexology. My GP will refer me to the endocrincologist in August if nothing has happened by then.

So, my PCOS symptoms are a complete lack of periods and bad acne. The acne hasn't started yet after stopping the pill but pretty sure I will be covered in it by August!

So nice to have the support of women who know exactly what I am going though. I don't know anybody with PCOS in real life.

I am a success story too so I hope I can give you all some hope of having your own bundle of joy.
X

littleladypop

Firstly, HELLO! And secondly, I have to say I admire your strength and positive attitude.

However, Attila and scooby are right...you may need help.

Getting your weight down and eating healthy are undoubtly going to help - it can;t fail to help! BUT...once you have managed this, if your periods are still irregular you really must go to see your GP.

If you have read the whole thread - you will see I have been fighting to get my weight down. I have lost 2 stone through exercise and low GI diet, I am not yet withing 'ideal weight' but I am now the weight I was when I conceived my son 3.5 years ago!

So, fingers crossed!

The other thing with PCOS which you REALLY want to know is whether you are someone who has a raised LH level. If you are, then even if you manage to fall pregnant, you are in great danger of miscarrying! Also, you may need help with progesterone supplements before week 12 to keep the pregnancy.

There are so many other things to contend with once you actually conceive! If you have been seen and know the score, then once you do conceive (naturally hopefully!) then the support mechanism will be in place if you need to be monitored in the early weeks.

I recently suffered a MC ( feb) after a long 14months of TTC, I was elated to managed to fall pregnant myself ( no fertility drugs! ) but alas....even with my PCOS, I had a crap consultant who just told me that my LH levels were not high so I would be fine. And then 1.5 weeks later, I was back in the hospital but this time at the EPU bleeding heavily. I still blame the consultant for being so slap dash about it all! It is a fact that women who are PCOS, have a 50%-60% of miscarriage in the early weeks! So why didn't she monitor! Don;t let this happen to you !

Anyway, I have gone on now.

Good Luck with the weight! Why dont you post here when you start to lose! We can be weight loss buddies then!

I am on a plateau at the moment.....I want to lose at least another stone...but my body is refusing at the moment!

LLLP - I agree with Attila, if you're only having 3 periods a year you're unlikely to be ovulating and consequently may need help to conceive. The TTC path with PCOS is a very long one. There are lots of hoops to jump through and the whole process can take over a year just to work out the right medication. It would depend on how old you are as to whether you seek help or not. How long have you been TTC for? I'm 30 and TTC for the first time, having had 3 periods since coming off the pill in March 07. I was desperate to conceive naturally but seeking help early has been the best decision I made. I'm still at the begining of the treatment path and hopefully will be given a way forward when I have a review appt with the gynae on Monday.

ello everyone- I've been away for a while working my bum off! I have been reading through all the posts, and feel not-so-alone now with my condition. Ive got PCOS too, and I've had 3 periods in one year :-(

I too am surrounded by pregnant women and new babies, al of my friends bar 2 are pregnant, and I'm a nursery nurse so my daily work is- yup, babies!!!!

I'm trying to stay positive, and I'm exercising and eating healthily. I've put on over a stone since coming off the pill in May 07. wow!

My ideal weight is 7st 4 9im only 5ft) But I've gradually crept up to 9st. I've never been this heavy, although my DH assures me I look lovely still (NOT!!)

I haven't asked to be reffered to a fertility specialist, because to be honest, I dont want to go down that route. I know lots of people who had Conceived naturally, and so I'm giving it my best shot (lots of regular b.d'ing!) even thoguh I have no idea whre i am at any time on my cycle!!! My periods are painful when they do come, and im paranoid about my hairy face (again DH says there is nothing there, yep, whatever!) So, to all of us PCOS ladies- we will be ok.

It will happen, just will take a bit longer than our lady pals.

good luck everyone xx

Hi LLL

I would urge you to reconsider your decision not to be referred. What worries you about fertility treatment, are you willing to write it down?. I have had more tests, an op and more tests done than I care to remember but I've come out the other side.

I think you have more than good enough reason to be referred; you have a PCOS diagnosis and your periods are painful. If your periods when they do arrive are consistently painful, seek medical advice. I speak from experience here!!!. If also you are only having three periods a year then there is a high chance you are not ovulating regularly, if at all.

Some women find following a low GI plan helpful re weight. I would also try and stay within the correct weight range for your height as excess pounds are hard to shift with PCOS and can also exacerbate symptoms.

Verity is a good website www.verity-pcos.org.uk if you have not already come across it.

In my case I would never have conceived without medical help.

Attila x

Hello everyone- I've been away for a while working my bum off! I have been reading through all the posts, and feel not-so-alone now with my condition. Ive got PCOS too, and I've had 3 periods in one year :-(

I too am surrounded by pregnant women and new babies, al of my friends bar 2 are pregnant, and I'm a nursery nurse so my daily work is- yup, babies!!!!

I'm trying to stay positive, and I'm exercising and eating healthily. I've put on over a stone since coming off the pill in May 07. wow!

My ideal weight is 7st 4 9im only 5ft) But I've gradually crept up to 9st. I've never been this heavy, although my DH assures me I look lovely still (NOT!!)

I haven't asked to be reffered to a fertility specialist, because to be honest, I dont want to go down that route. I know lots of people who had Conceived naturally, and so I'm giving it my best shot (lots of regular b.d'ing!) even thoguh I have no idea whre i am at any time on my cycle!!! My periods are painful when they do come, and im paranoid about my hairy face (again DH says there is nothing there, yep, whatever!) So, to all of us PCOS ladies- we will be ok.

It will happen, just will take a bit longer than our lady pals.

good luck everyone xx

I'm sure they do Dungun I have told them (I think ) that we weren't using contraception for three years before I fell pregnant with DS so I'm hoping they're not fobbing me off as it's obvious I have a problem. There will be hell to pay if they are

Hi ladies

tiger
Yeah the consultant ( the cow! ) said that about clomid being mainly for ovulation. However, the GP also said that it is known to fix other little irregularities in a cycle as well like a slightly short luteal phase for example.

So, I am thinking that it might just iron out whatever little glitch there is!!!! If I am ovulating that is!

fruity
I was told by my GP that people who are seing the fertility consultants because of difficulty with getting pregnant 2nd time round do tend to be the first they try and fob off!!! So don;t let them!!!! I think my consultant was guilty of that as well!!!

Other interesting thing was that, when I told the GP the whole story and that i was discharged from the subfertility unit, she promptly asked if my consultant was dr. willis. I said yes and she went silent and just went hmmmmm....

I take that as that consultant has a bit of a reputation!!

Dungungirl - So pleased that things are moving in a more positive direction. I'm no expert but I think that, if you are ovulating, then Clomid won't help as that is what it does - it makes you ovulate ... but, like I say, I'm no expert.

I know what you mean about IVF. What's odd is that DH has been really anti anything like that, right from the start. Now, however, he seems more open to the possibility than I am! Well, hopefully it won't be an issue.

Take care all

Awww DGG I'm so pleased things are moving again for you. It's such a rollercoaster isn't it. Whatever happened to the good old fashioned have-a-shag-and-get-pregnant trick? What a load of old crap lol! Well I'm sure we'll laugh about it one day anyway

If I'm not given Clomid or something to kick start my eggs in August then I'm going to try your Clomid trick. A bit of blackmail never did anyone any harm

Hello ladies

Fruity good news about the scan!

tiger Wow...IVF...that is a big step....can understand you being unsure.

Went to see my GP this morning. Told her about what happened at the subfertility unit and that I was planning to take clomid.

She has written me 2 slips for day 21 blood tests, and has advised that we do those 2 first before clomid. If indeed they put ovulation into question, then she will re-refer me immediately to a fertility unit with confirmation in writing that I need clomid !!!!! If the blood tests indicate ovulation, even though she thinks then clomid would not do much good, she said it would be up to me if I decided to take it on my own. But even she admitted that a low dosage would be safe.

So here I am again, back where I started more than 6 months ago!

Can't believe it really...but at least I know what I am doing for the next few months which makes me feel better.

Fruity - sorry, can't remember how old your DS is ... but my DD has been to almost all of my scans with me. In the early days (LOL) she used to sit in her pushchair at the side of the bed but now she just sits on a chair. I think it actually helps me to relax as I can focus on her and not on what the sonographer is up to! Don't know your DS so don't know if he would be OK with this but, well, it is doable.

Oh yeah, I forgot about the school hols. Might have to take a half day on that day. At least then I'll only have DS and I'm sure my mum will come with me to help

Right, just off on my mate's Hen night, going to see Sex and The City first

Fruity - you can find out term dates from this page. There is a link a little way down.

Hi Attila.
I did think of asking about ovarian diathermy but have decided to wait and see how I get on with the Puregon first. I will definitely ask about it if I don't respond to this new drug.
Something else that he said was that there is a 'narrow window' with every woman between the drugs being too weak and them being too strong. The effects of this are either no difference or hyperstimulation. He said that, if the window is too narrow then that's when we would have to consider IVF. So, if the Puregon doesn't work, or works too well, then that's the route he is currently thinking of.
But, like I say, I'll certainly ask about ovarian diathermy before we do anything about that.
Something that I read on that website I linked to is that Puregon can be used in conjunction with Clomid so I may ask about that too ... but fingers crossed I react well to it and don't have to worry about alternatives.

Fruity

Well done re the rescheduled scan. BTW the schools around here break up earlier than that date also.

Hi TC

Re your comment:-

"Well, as my consultant put it I need "quite a nudge"! They have decided to stop the menopur injections for now and have prescribed me Puregon for my next cycle. After this (I'll get 3 cycles if I show signs of responding to it) the only option left is IVF ... still not sure about that".

Well I would not be either.

Will he not consider ovarian diathermy or is he not skilled in performing such an operation?. In any event I'd ask about this, women with PCOS who are offered IVF should consider this prospective treatment very carefully before going ahead due to possible ovarian hyperstimulation risks.

Attila

Morning
Fruity - that's brilliant news! Aren't the schools on holiday by then? They finish on the 11th here. Hope you are able to sort out some way of going without millions of little ones in tow.

Well, as my consultant put it I need "quite a nudge"! They have decided to stop the menopur injections for now and have prescribed me Puregon for my next cycle. After this (I'll get 3 cycles if I show signs of responding to it) the only option left is IVF ... still not sure about that.

Hope everyone has a good weekend

Hi girls, just popping in to say.... RESULT! I have had my scan rescheduled for the 28th July!!! Whooppeeeeeeeeeee Only problem is it's a really crappy time, I'll have two mindees plus my own DS and it's right at school run time too (to pick up older mindee) - Ah well I'll cross that bridge when I get to it

I think that sounds like a fab idea.

ladythompson

Hello there!

Yeah, it is difficult, but I understand - I think DH just feels phased by it all and he is not a patient man either....he was really to give up after 10 months TTC !

I don;t have problems with regular periods...but they haven't confirmed that I actually ovulate every cycle.

I am thinking of asking to be referred to the ENDO unit at my hospital as they have a wonderful PCOS specialist clinic that runs there. They also treat women there for all problems associated with PCOS - so I am going to ask my GP about that.

The consultant there is a expert on PCOS and she and her dietician have published a book in Jan this year on PCOS. They are amongst the leading people in PCOS....so I might be better off seing them as they can see my infertility within the context of PCOS - unlike the subfertility consultant who kept trying to make it out that my PCOS was not the main cause of me not conceiving!

What do you all think? Sound good?

Dungangirl...I do understand that private appointments are expensive, but even a couple could be worth it. Even ONE, purely for advice! On the other hand, I suppose that if your husband is so dead set against it (why? Even just one appointment to talk your case through with a fertility expert?) it is not worth falling out with him.

Purely from what you say, it doesn't sound to me like you have got endometriosis, but I am not a doctor of course.

I think I said this before, but have you tried Metformin? I know it doesn't work for or suit everyone, but it just brought my periods back like magic. I was told by an NHS consultant when I was in my twenties that I would probably need Clomid at the very least if I ever wanted to conceive. Well, that turned out to be tosh. I used the London Women's Clinic. Hope you get your referral in any case.

Hi Dungangirl

Re your comments to Moonlit:-

Do ask about getting your GP to refer you to this hospital (Basingstoke and North Hants) you speak of.

Not surprised really to read that you knew more about PCOS than your GP, PCOS is a condition that is not really recognised by many Doctors. Give him the details of Verity's website www.verity-pcos.org.uk (they also I think can provide leaflets for GP surgeries).

Been there and have the t-shirt re appointments for DS. My son who is a bit older than yours was also diagnosed with both developmental and speech and language delay. He is at mainstream school (is supported with a Statement of Special Needs - very important that because no statement to my mind in school equals no support!) and is doing very well. He is fully accepted by his classmates; something that is very important also to me. I note your son is 3; I would put in a request yourself to the LEA for him to be statemented (this will go some way to making his school educational life easier). Does he have 1-1 at nursery?.

As an endo sufferer myself my problems re endo started as soon as I began menstration at 14. It took me years to get diagnosed. The nature of periods can and do change as you get older; if changes though are ongoing these should be mentioned to the cons gynae (many GPs would not recognised an endo case if it fell over them).

Re your third point I'd have got very angry if any cons had said that to me, what a load of old cobblers this person uttered!. At least you realise that you can have periods without ovulating (but not everyone is aware of this). Any blood test results over six months old should be discounted; you need up to date test results.

HTH

Attila x

So we have sooooo much in common Moonlit!
We should swap some more notes!

Hi all

Fruity - I can't believe that they only have one sonographer! What are they planning to do for 9 months? Crazy. That is just more proof that you need to ask for a referal to an alternative centre.

Dungungirl - I agree with Atilla about checking private clinics out - tho it seems you have done a pretty thorough job! Sorry that your DH isn't up for it. Are you going to the gp on Monday?

Moonlit - Excellent; a referal! Let's hope that it proves to be a fruitful one... I agree that we can't really blame the gps, as they have quotas and stuff but they are the ones that we see ... This thread has really brought the whole 'postcode lottery' thing home to me.

I'm off for yet another scan this afternoon and then a meeting with my consultant - this will be the first time I've met him as I've always been seen by a nurse specialist. She is excellent but it is nice to think that I'm actually going to meet the head honcho ... tho it shouldn't be because, if the treatment was working, there would be no need to see him ... ah well.
Will report back later

moonlit

Congrats on getting the referral! Hopefully the unit you go to will be one that is doing it's job! I am keeping my fingers crossed for you! Out of interest, which hospital are you going to? If Reading was an option, you can't be far from me!

I am thinking to ask my GP to refer me to Basingstoke & North Hamsphire hospital as I have heard Dr O'sullivan who is a consultant there is pretty good. AND he is a specialist in PCOS as well.

Anyway, I know what you mean about being a googler!!! My GP actually threw his hands up in the air and said to me the last time I saw him that I knew more about PCOS than he did!!!

Our case sounds so similar......I too have

1. Lots of stress

• I have a 3 hour total work commute everyday and I also have a DS who is 3, who I love to bits but has a developmental delay which continues to worry me slightly. So I also have to fit in ( around my job ) speech therapy and developmental assessments at the hospital for him every couple of months!

2. ENdometriosis

• haven't ever even wanted to think of this!

3. Do I ovulate?

• Well according to the consultant - I get a bleed every month so I ovulate! What a load of rubbish! Like you they checked me on 2 cycles. One cycle my bloods showed that I CLEARLY didn't ovulate ( I still got a period though! ) and the second time well, reading were 'just' within normal.

So we have sooooo much in common Moonlit!
We should swap some more notes!