*****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Hi - this thread is a little out of date.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

Scooby I'm with you on the worst nightmare scenario I still cant come to terms with having PCOS.
I started taking Progesterone on cd89 - I just wanted to make absolutely sure I wasn't pregnant - strangely enough I kept thinking I might be as I thought I had ov'd very late. So I was put on a five day course. AF arrived 3 days after the last tablet. When I say AF it was barely anything at all. I questioned whether it really was AF! I got a bit of red on CD1 then it almost dried up completely by CD2 I was expecting 3 months worth of AF which I had at the beginning of the cycle (the last one being 88days). I can feel Attila's heckles rising as I say this but I am temping which actually I'm rather pleased about because in the last few days I had all the signs of ovulation but I knew I hadnt really ov'd because my temp hadnt risen. If I hadnt been temping I would have been 100% sure I'd ov'd and would be getting unduly excited by now!

I hope it all goes smoothly and quickly for you Scooby

It's funny, I think I came to terms with the PCOS a long time ago, but I've had loads of time to get used to it. My doctor in the U.S. suspected it just before I moved here, and that was nearly six years ago. I was on the pill then and at age 26 it seemed like I had loads of time. I guess I did think it wouldn't take this long, and I'm starting to get more worried as each month passes. However, I know so many people with PCOS do end up conceiving naturally, so I'm still hoping.

That being said, FF took away my ovulation and coverline today, so now I'm on day 22 and waiting. I really thought I'd straightened myself out a bit, but perhaps all the stress of the last month has got me out of whack again.

Does anyone know of any links between PCOS and alcohol? I'm currently doing a masters in sports medicine and I had an interesting lecture on doping in sports. Alcohol dramitically increses your testosterone levels over a short period yet if you drink excessively for long periods it reduces your testosterone levels. As PCOS often is related to high testosterone levels, does anyone know if there's any reserach that's looked at PCOS symtoms and alcohol? If you put the above into context the worst you can do is drink moderately as that will increase your levels. It would seem that the best option would be to give up alcohol all together, as the other option of drinking excessively has way too many other health issues! Have any of you given up alcohol and noticed any reduction in symtoms? I think I might try it over the next couple of months and see if it has any effect on my skin and ultimately, my fertility.

I've not heard of that scooby but very interesting!

Does anyone know if taking progesterone has given me a sort of 'false' cycle iyswim?

Afternoon ladies

It is ages since I posted on this thread ... I hope that everyone is going along OK.

I'm having a bit of a nightmare at the minute, forgive me while I off-load...
I was finally given a course of progesterone which I took and duely started my period, a week ago last Saturday (now on CD10) Despite being told that my consultant wanted me to do another course of Clomid, I was given injections straight away. So I went to see my specialist last Tuesday, CD4, and learnt how to do the jab myself. I have now done 4 jabs and had 2 scans. The first scan was last Friday and it showed 2 folicles - one on each side - one was 7.6mm and the other was 7.5mm. This was pretty good as, with Clomid, I was on the highest dose before I got anything this big and that was on CD14. So I went in today, feeling all confident and they only found one at 7.1mm and one at 5.6mm.
I feel so crap. My specialist said to do another jab on Wednesday and go for my scan as arranged but if there isn't any improvement by then I'll have to start jabbing everyday, instead of every-other day as at the moment. When I was first given the jabs I read the stuff that came with them and saw that I am on the lowest possible dosage so there is a long way to go before they will decide that this isn't working but that doesn't make me feel any better.
I can't really rant at DH about all this as his main reason for not wanting to seek help with ttc is that he thinks we will find it all too stressful and I'm worried that, if he thinks I'm getting stressed about it, he'll want to stop the treatment.
To make matters worse, my best friend told me the other day that she is expecting her 3rd - and it wasn't exactly planned but they are over the moon ... I really am happy for her but, at the same time, it makes me more sad for myself.

Sorry - this is such a self-absorbed post but I really needed somewhere to vent.
I'll go back through and try to catch up with what everyone else has been up to in the last month or so.

((((((((tigerschick))))))))))

Have not had personal experience of the injectible drugs (as had to wait six months for the funding for same to come through) but certainly saw all the kit and practiced injecting an orange!. (Was told to inject in different areas of the thigh as injecting in the same place can become very painful).

Seeking help for ttc is stressful anyway, I would hope that your H would not want you to give up treatment despite the difficulties.

I would talk to the cons next time about how the dosage is decided, whether you should start the next cycle on an increased dose and also about surgery in the longer term (specifically ovarian diathermy and whether he considers you a good candidate for such surgery).

Think your reaction re your friend is perfectly natural btw so don't beat yourself up over it.

There is always support here

Attila x

tigerschick

Don't worry about venting OR sounding self-absorbed.

I know I have gone on about my problems to the post many many times, it has made me feel so much better and to tell you the truth, it is nice to be able to comfort each other while we are all going through so much.

I agree with Attila, your reaction to your friend's news is totally natural. Read my last post! I was moaning about the same thing only last week!

Chin up - we are all here for you!

Scooby

Interesting bit of info you got there about the alcohol. I don't drink and never have....so I couldn't tell you if it helps.

Will be interested to find out if you find it does!

Hi Atilla and Dungungirl

Thank you so much for your posts - you both made me feel so much better (if not a little teary) I'm more settled today. DH is also pretty cut up about things, which is comforting, and his attitude is very much 'well, we'll just have to wait and see what happens...' Which is quite comforting.

Hope everyone else is OK today.
BTW, Dungungirl, I haven't had a chance to say how sorry I was to read about your mc. Really hope that you have much better news very soon.

hey girls! Very quiet in here of late! Where is everyone?

Hi fruitloop

I've sort of re-emerged lately... how you doing?
I went for another scan yesterday and had an egg on my right ovary that was 7mm and one on the left that was 9.4mm. I can't go for a scan tomorrow as I am working and only work 1 day a fortnight so can't really switch. So I'm staying on the same dose for now and have 3 more scans booked for next week ... we shall see!

Hope everyone is well and happy

Hi TC I'm bored of all this wondering what on earth is going on in there. I'm now thinking I should have my bloods taken weekly to see if I'm ovulating. Is this common practice? I dont know I'm just really worried that I'll get to my follow-up gynae appointment in August and she'll just turn me away for more tests before prescribing anything (ie Clomid). I cant wait all that time for nothing.
It's obvious I'm not ovulating. I'm now thinking and wondering if people with PCOS dont get a temperature shift when they ovulate? I had all the symptoms of Ov about a week ago but no temp shift. I realise temping is not a good idea but it gives me a bit of control.
You've taken Progesterone haven't you TC, did you get a really really light AF? Mine was so light and only got red blood for about 2 hours (very light). Then what happens that cycle? Surely if you're given a sort of "false" AF then you'll have a "false cycle? IYSWIM?

Was thinking the other day....

Has anyone actually done a blood sugar test?

As PCOS is supposed to be linked to insulin resistance, do they just assume we all are insulin resistant once diagnosed with PCOS?

Am thinking whether I should ask to be tested....

might be a good idea DGG Makes sense doesnt it.

I've just booked my appointment with the GP for next weds morning at 10.20 (i'm writing it on here cos I'll forget time!). I'm going to ask him for weekly blood tests to check for ovulation. I might suggest blood sugar test too while they're at it

Hi Fruity,

TBH these tests should be done by the hospital ideally rather than the GP.

Am I right in thinking that your next appointment with the cons is not until August?. This is appalling if I am correct.

My weekly blood tests were done at the hospital under the supervision of the gynae. In any given month I had tests on week 1, 2 and 4 (had week 3 off). Blood tests done over a period of months showed a distinct pattern of non ovulation; my hormone levels rarely changed by much. I also had internal ultrasound scans done weekly during that time.

Not all PCOSers are infact IR so that test (think its fasting glucose from memory) is not done for everyone. Metformin is often helpful in such circumstances and it can been more beneficial to take with clomid than just clomid on its own. Clomid certainly has its place but it should be used on PCOSers with caution. It can cause an exaggerated rise in hormone levels (LH). As many PCOSers have an excess of this hormone to begin with, clomid is thus not always beneficial and thus does not always work.

I have certainly had really light AFs - my periods only used to last two days at most (except on the occasions when my endometriosis decided to show its prescence in various ways - pain and heaviness). Its also because there is not enough endometrium (lining) as the level of progesterone is awry.

Certainly non ovulatory cycles are very common with PCOS. You can anyway have a rise in temp in the second half of your cycle when an egg has not been shed so charting as a general method is not infallible anyway.

A healthy fasting glucose level is between 70-90, but up to 110 is within normal limits. A level of 111-125 indicates impaired glucose tolerance/insulin resistance. A fasting level of 126+ indicates type II diabetes.

Hi Attila

Yup you're right in thinking my follow up isn't until August. I'm just really worried I'll finally get to my appointment and she'll just turn me away with a list full of more tests before she prescribes me with anything. I just need a bit of a boost in the ovary department! Surely they can give me something to stimulate my ovaries. I've had HSG now and FSH/LH blood tests, Baseline in July. What other tests am I missing? cant I get these done before my Aug appointment?

Hi Ladies,

How are you all?

Attila I chickened out of my GP appointment, because although I am on Cycle 19 TTC *2, I feel as if I am complaining. Also I haven't lost any further weight to help myself.

Only problem now is we are moving abroad for three months. So I don't want to wait until the end of this year to get help, so I guess i should just make another appointment?

Ladies what do you think?

x

Moonlit

I would ask for another appointment - you are not complaining!.

Where will you be moving to for the three months?.

Good luck

Attila

Hi Fruity,

To my mind you ought to be seen far earlier than August!!!. Is there any possibility whatsoever that you can be seen earlier, even by phoning them weekly to see if there are any cancellations?. You are being served very poorly.

If your man has not already been tested at all I would suggest he has semen analysis done.

They could continue to monitor your LH and FSH levels through blood tests to see if there are any changes to either.

I see if I can find a list of tests that are often missed and put that up for you as well.

HTH

Attila

The most common tests that tend to be omitted are:-

Adequate x-rays of the uterus which may show abnormalities not otherwise seen at laparoscopy.

Hysteroscopy - telescope inspection of the inside of the uterus which may occasionally show abnormalities not seen otherwise

Repeated sperm counts over several weeks and months to make sure there is no subtle abnormality

Testing the sperm in special media such as swim up testsvelocity testing. However, when they are done, they often uncover a hidden cause for the suppposed unexplained problem

Thorough hormone tests to detect abnormalities of male hormone or early falls in progesterone

Scanning of the ovaries to see if follicles really are developing and there are no sign of polycystic ovaries.

Fruitloop, I agree with Attila, august does seem slightly far away, I'd keep phoning to check for cancellations. I'm now in the same situation you were about 4 months ago. I've got to the end of the month and no AF, taken a pregnancy test which is negative (I now have a hatred of the sticks!) and don't want to begin the progesterone medication just in case. I know that the likelihood of me ovulating is zero, but there's always that faint hope! Anyway, I'm moving house in two weeks, so I've decided that once I'm in my new house, I'll take another test and then when I get yet another negative result, I'l start the medication.

As for insulin resistance, it's something I'm bringing up with my gynae next appt. I definitley have sugar highs and lows, yet am not overweight. Having read round the subject I'd be interested to find out if I am insulin resisant or not. I started a low GI, low sugar diet anyway, just in case.

Moonlit, your GP is there for you to go to. Don't feel like your complaining, if you need to see him/her book an appointment.

Hi, thanks ladies

Yes I can phone for cancellations. I'll do it when I have my baseline scan in July. But by then I'll only have a month to wait.
So you reckon I'll need to get all these tests done before I'm prescribed anything? Is the
Hysteroscopy like a baseline?

But I have PCOS, my tubes seem clear (from HSG) and I'm clearly not ovulating (90+day cycles). Surely all I need now is something to kick start my ovaries? I cant understand why it's so difficult. As long as I'm closely monitored while on whatever they give me it cant be such a big deal? DP is going to go for his test but it's obviously me with the problem.

Hi Fruity

The test list that I gave was a list of the tests that are commonly omitted. It does not mean to say that all of these tests should be done as a matter of course. However, in cases where "unexplained subfertility" is cited it is often the case that one or more of those tests has not been done.

I would also phone well before July. Infact I'd call them tomorrow!. You have a diagnosis anyway and as such should be seen sooner rather than later so that treatment can be decided upon. Clomid is often the first line of treatment used in such circumstances. You are also correct to state that you should be monitored. Whether these people though will actually monitor you is another debate entirely.

Hi Ladies,

Thank you for your advice. I will make an appointment first thing tomorrow.

Attila - We are moving to the US.

xxx