*****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?

---------------------

Hi - this thread is a little out of date.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

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

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.

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!

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

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 Everyone
Hope its ok if I join this grp.
I've just joined this thread from another new PCOS thread.. thanks for the invite Scooby and FruitNNutty.

Im starting to TTC for 1st time as of this month. HAve had PCOS for 15yrs and been taking metformin for 2yrs which is pretty good..

Janeandben- are you here too?
Your Reflexology sounds great. I've got my fingers crossed for your AF. Coil removal went ok thanks- I had a really good doctor and it wasnt too painful at all.

So here we go....

Welcome GYo,

We are a friendly bunch

Aren't we ladies?

Can I say Dianette was fabulous, when I was taking it almost 3.5 years ago now. My skin looked great too!!!

Now I've read the posts, I can see that you are already here Janeandben! sorry about that...

Hi Moonlit
Thanks for the friendly welcome.

Good morning everyone - hope everyone is well today!

Dianette is really great, I took it too but I had to stop years ago as it gave me migraines. I now take antibiotics for me skin which are really good. Although my doc has just changed the type of antibiotic from Lymecycline to Erythrocin - apparently the lymecylcine isnt safe if Preg or TTC.
Waiting to see how the new one works

Of course I've been taken off the Vaniqa cream which is my biggest concern.

Has anyone else stopped using Vaniqa? Did hair grow back stronger than before?

Hello to the new girls janeandben and GYo Welcome to our lovely thread. You'll get some fantastic support here and fab advise, especially from Attila she's a star and a wealth of knowledge.

Hey, no one told me about cream you can use to minimize facial hair! I want a bucket load of that stuff, is it any good? Ah, poo, we can't use it while TTC? [hhmph] I am seriously paranoid about my hair, I pluck it every morning and I swear its back by lunchtime It's definitely worse since coming off the pill which, BTW, I plan to never go back on again! It was fantastic but lets face it, PCOS makes an excellent contraception on it's on dont you think?
I was off the pill (not using anything) for 3 years before conceiving DS (without trying though). I've now been pill free for 10.5 months and nowt. Not a single bean, and actually probably not a single egg either

moonlit why are men so bloody stubborn? I'm surprised he bothered get tested! I haven't told him he might need to go a few more times not sure how he'll take it. I hope you get some Clomid, get those little eggs out of hybernation

janeandben how long have you know you've got PCOS? I was scanned for it before I fell preg with DS as my periods were so all over the place. They found nothing. I was scanned again early this year (internally) and they discovered I actually do have PCOS. If I'd know before I wouldn't have wasted my time going back on the pill after DS

what a lot of typos! I really must preview before posting

welcome GYO and jeanbean
Hello everyone else!

moonlit
Ahhhh you are in buckinghamshire. not far at all!

ARRGHH! I can't believe men sometimes. It is hard to be them I suppose sometimes, but in a way I also think - if WE the women are having to go to a million appointments, have bloods taken, take drugs, AND deal with the stress of trying to arrange treatment AND in some of our cases- lose weight and run a household as well.

AND AND AND...hold down a full time job!

I am sorry but the men have it easy compared to us!

Ok rant over...

I hope everyone's doing ok and welcome to the newbies.

I've got my next gynae appt on monday and have just had my blood results. On CD 3 my FHS is 5.6 and LH 9.4. Testosterone is 1.9, oestradiol is 103, prolactin is 385, SHBG is 52, DHEA-S is 3.7 and androstenedione is 5.8. I haven't a clue what this all means apart from my LH and FSh appear to be in the normal range for that stage in the cycle. The fact that the AF was induced in the first place probably means they mean nothing anyway! Hopefully the Dr will explain it all on Monday. Can anyway else shed some light on the values? If I get any info on Monday I'll share it all here!

have just found a website on lab tests which has made it all a bit clearer. The only abnormality I have is my FSH/LH ratio which is about 2:1 and should normally be 1:1. see below for the all the info I found:

Laboratory Tests

FSH (Follicle Stimulating Hormone), will be normal or low with PCOS

LH (Lutenizing Hormone), will be elevated

LH/FSH ratio. This ratio is normally about 1:1 in premenopausal women, but with PCOS a ratio of greater than 2:1 or 3:1 may be considered diagnostic

Prolactin will be normal or low

Testosterone, total and/or free, usually elevated

DHEAS (may be done to rule out a virilizing adrenal tumor in women with rapidly advancing hirsutism), frequently mildly elevated with PCOS

17-ketosteroids (urine metabolites of androgens, used to evaluate adrenal function) elevated or decreased?

Estrogens, may be normal or elevated

Sex hormone binding globulin, may be reduced

Androstenedione, may be elevated

Hi Scooby,

I can shed a little light and they're not untypical for a PCOS patient.

Your LH and FSH are out of sync which is typical for a PCOSer (LH being higher than FSH). If looked at separately they however look okay which is why these levels MUST BE COMPARED. It is only then that the abnormality comes to light. Your testosterone is very low (was free testesterone tested?), your prolactin level is too high (should be less than 24ng/ml on day 3), your DHEAS level is too low (may be improved by insulin sensitive meds, perhaps metformin?), your estrodial level and androstenedione level are too high also.

I would be interested to see how the gynae addresses the problem because it certainly cannot and should not be left untreated.

Certainly ask about the suitability of you to take Metformin. I would also discuss at some length other possible treatment options like injectible drugs and ovarian diathermy surgery. Quite apart from anything else, you ought to be seen regularly by the gynae as continuity of care is vitally important (you should be seen by her every month).

Thanks attila, that's really usefull info. I was going to mentio metaformin to the gynae anway, so I will definitely do so now. I'm hoping to avoid injectible drugs and ODS but if it means I have to have them to conceive then I will do. As I've never had symptoms of PCOS whilst on the pill, I think as soon as I've had my family (fingers crossed) I will go back on it again as it seems to be the best management for me.

They did test my free androgen index. It was 3.7. On my blood test result form I fit into all the normal values so fingers crossed, I'm not extreme, alhtough I do realsie that at different times of my cycle the values should vary.

I'l feedback after tomorrow's appt. I feel highly informed going in to it, so fingers crossed I'll get a reasonable outcome. Wish me luck!

F&N - I have known I have PCOS since I was 17 due to lack of AF and bad skin. Was put on the pill as didn't want a family and told to come back when I did want a family!

Had ultrasound of pelvis when I had been off the pill for 3 months to try for a baby and I had many cysts on my ovaries and they looked inactive. Plus my skin was manky again and no AF. That's when I was referred back to the endo and commenced on Metformin but I still had to wait 6 months for AF and another 6 months before I conceived.

This time I am on CD20 since stopping Dianette and am waiting with bated breath to see when I will have AF! My skin is OK up to now and normally it has erupted straightaway. So fingers crossed! Only BD on CD 11 and 18 due to various reasons but I honestly don't think I ovulate without help so am not too bothered about timing BD yet!

Does anyone have any experience of their PCOS symptoms being better after having a baby? It was mentioned that having a baby can sometimes kick start your body into behaving normally but i went straight back onto dianette after my son as he was prem and very ill so another baby was not on the cards.
x

Hi Scooby

I never had any symptoms whilst on the pill either - the pill can mask symptoms of the underlying problems which have always been present. That certainly happened for myself.

Wishing you luck with your appointment tomorrow!!.

Attila x

Appointment went really well. I'm now on Metformin which I have to build up slowly over the next 3 weeks to reduce any side effects.

I'm also back on the progesterone pills to induce AF then on day 2 I start on Clomid. I'm then having blood tests at my med centre to track whether I'm ovulating or not.

If I don't ovulate in the first month then I double up on the Clomid and then again if it's the same for the 2nd month. If I'm still not ovulating after that, then I have to back to the gynae to re-evaluate.

Fingers crossed I won't have too many side effects from the medication and the minimum dose works.

Has anyone got any experience of metformin or clomid and their side effects?

Hi scoobyd00,

I am so pleased your appointment went well. I was wondering have you been prescribed clomid before? I can't remember if you have.

I take metformin too (3 tablets a day), it takes time to get used to it.

x

Moonlit. Nope never taken any med before. I didn't know I had PCOS until 3 months ago. It's all a brand new experience for me. Having been very healthy all my life it's been quite an adjustment to accept that I need to seek treatment and take medication.

I asked so many questions today I think the Dr was glad to see me leave the room!

I took Met and Clomid to conceive 4 years ago. I was on 1500mg a day Met and 50mg Clomid. The Met side effects were diarrhoea occasionally but nothing too drastic, I found avoiding fatty food helped, if I had a bag of chips uh oh!

The only side effect I had with Clomid was hot flushes now and then, gosh they were weird.

I expect to need this treatment again this time but I am not seeing the GP again until August to be referred back to the endocrinologist/gynaecologist clinic.

Really hope this works for you. X

Hope it is ok to join you all.

I have had pcos for last ten years. Was prescribed Metformin and clomid and it took 2 months to fall pregnant with my daughter now 3 years old. Found the side affects not very pleasant as felt really sick all the time but could put up with it as it worked.

PCOS symptoms kicked in again after I stopped breast feeding but was hit and miss with the pill as my periods were non existent and convinced myself would never fall pregnant naturally as it had never happened in 10 years. We had just started to think about having a 2nd child and went to Dr for blood test and get referred back to Gyne clinic but test came back as already pregnant and I never had a clue.

I know weigh less than I did before I had first DD and only symptoms are small amount excess hair on face and not had period since 2nd baby born 4 and half months ago but that could be down to breast feeding DS. I can only think that maybe fact that I lost a fair amount of weight before faling pregnant this time may have kick started my ovulation.

I would also recommend reflexology as was having treatments while on met and clomid first time with DD and had had 3 sessions when became pregnant.

hello everyone

Scooby

Glad everything has gone well. I was wondering...are you going to an endo clinic or a subfertility unit?

I am really torn at the moment as even though I don't want to take medication if I can avoid it, I REALLY wonder whether it is that 'kick start' that I need.

AND if I need it, why nobody wants to let me have it!

I wanted to be referred to the endo & pcos clinic where they help PCOS specific problems ( including subfertility ) BUT my GP refused to refer me as I have managed to lose 2 stone myself and she thinks I don;t need metformin ( which is what that clinic always prescribes their patients ).

She would rather refer me back to the subfertility unit if my bloods over these 2 months indicate I am not ovulating. However, I don;t think it will get me anywhere going back there as they don;t seem to take my PCOS seriously.

I don't know...I am waffling now...

Dungun girl

I was referred to the gynae at Frimley Park Hospital for my PCOS and they've dealt with the infertility at the same time.

Your GPs not telling you the complete truth about Metformin, it's not just for losing weight, it's also to help PCOS symptoms and rebalance the insulin levels. I'm not overweight and they still prescribed me Metformin. I'm waiting to see if I have any side effects.

If I were you I'd ask your Gp again to refer you to the PCOS/endo clinic, as that would be the best place for you to get the correct treatment. If not, ask to see another GP.

Well done for losing so much weight as well.