PCOS ladies - pop in!

[ChandlersFarang]

Hello! I just got diagnosed with PCOS today... Am cautiously optimistic as I think I'm going to be getting some good treatment. DH and I are ttc, and I was wondering if any of you Mumsnetters are in the same boat as us!! Thought it might be nice to share war stories and treatment progress etc somewhere, as there hasn't been an active PCOS thread in a while on here... Share your stories with me!!

[cth1982]

Hi Ladies,

I to am struck with the dreaded PCOS - after what felt like an eternity of going back and forth with the GP (they kept saying my cycle was disrupted due to stress) I finally got sent for an ultrasound and was diagnosed about 8 years ago. I was on the pill until November last year when we decided to ttc.

Six months in and thus far no luck - I have been temping the last three months and it looks as though I am ovulating, however last month was totally messed up due to me taking pregacare vitamins which extended my cycle to over 50 days and totally screwed with my temperature! Average cycle is just under 40 days.

Even with PCOS Doctors will not deal with me until I've been trying a year with no luck so hoping it just comes naturally.

PCOS Symptoms (apart from crazy cycles) - nice weight gain in the middle of my body (have lost over 10kgs so far though thanks to Weight Watchers) and some thinning of hair around my fringe area. This month my temps are back to normal and my CM is now EWCM so hoping this is a good sign!

Def have those moment of it will never happen and I'm too broken to ever get pregnant - but holding on that it will happen not just for me but all of us!

[1moretime]

Im on metformin & i get the ewcm most cycles...i tend to go from dry just after my period, then creamy, watery then ewcm. Xxx Best of luck. Xx

[ChandlersFarang]

1more that's really encouraging, you sounds pretty normal from everything I've been experiencing!

Just woken up with really bad cramps, I wonder if this is me ovulating for the first time now or just the mexican I had last night coming back to haunt me. Ha ha.

[1moretime]

Thanks chandlers iv had cramping on & off since the weekend. I started temping half way through my cycle & i think i may have ov???
I dont really understand it, but my temp shot up on wed morning & as stayed up until today :-)
Not sure though??

[woodwaj]

1more lets hope your temp stays up!!

[ChandlersFarang]

That sounds promising 1more!! I read that there was no point in temping if you have PCOS as your temps and hormone surges will be all over the place. Or is that just without treatment? If you're taking meds to regulate things does that mean you can chart successfully?

I'm trying to work through what our health insurers will actually cover while we are out here. A doctor there has emailed me saying PCOS itself doesn't need any treatment if you're having 3/4 periods a year. I don't feel like that's right - surely it's better for you to have cycles (fertility aside!)? I assume having more normal cycles will reduce other symptoms? What are your thoughts on this? Not going to reply until I get my head around it!

[1moretime]

Thanks woodwaj so do you think i have ov?
chandlers ohhh i read that opk's are not reliable with pcos, and that the only way you can tell is tru temping x

[Donttellmetorelax]

Hi everybody!

I introduced myself yesterday in another thread, so I'm going to copy and paste if you don't mind.

I'm not following any treatment at the moment, but now it has been oficially 6 months since we started, I'll go back to the doctor and see if this time they take me more seriously.

I'm 36 and TTC for the first time since January. I was diagnosed with PCOS in my early 20s back at home in Spain, given BC and call it the day.

My first cycle after BC was 47 days long and I was getting several sugar crashes, so in February I went to see my GP and told him about my PCOS. He just smiled, nod and told me to keep trying. He took some blood tests, to check my thyroid and blood sugar (he didn't test fasting insulin). Everything came out normal, so that was it.

I started eating low GI (ish) and exercising regularly. Second cycle 53 days long (WTF)! I read that Inositol could help, so I started taking it and that third cycle went down to 35 days!

I tried to chart my BBT, but I was waking up in the middle of the night stressed about forgetting to take my temp, so I stopped ( I didn't need any more added stress). So I bought a bunch of cheap OPK from amazon and decided to test every day from day 9 until the end of the cycles just in case there was more than one surge. I've been doing this for 2 cycles and so far I only detected one LH surge per month.

This month I got an + OPK on day 16, although I'm not sure I ovulated, we DTD a lot before and after just in case .

Now I'm on day 23, I haven't detected any other LH surge and I don't have any symptom whatsoever, will see.

[1moretime]

Hi donttellme
Its so frustrating when docs wont take you seriously!!
Bless you it must be hard for you.

Good news about the + opk :-)
I have heard that pcos sufferers shouldnt use them as a surge is always there??? In my case i had 2 faint lines then didnt test anymore so dont know if a dark line would have shown eventually or not?
...but i have done them on days & had no lines at all so obv they must work to some extent.

Fingers crossed you get a bfp soon seeing as you dtd plenty

Iv never had my blood sugar checked, but app im insulin resistant & thats why i take the metformin. Xx

[ChandlersFarang]

Donttellme - thanks for your message!! Interesting that you tried another drug and it seemed to make your cycle shorter. Were you prescribed it? How come you weren't prescribed one of the usual ones I hear about like metformin?

One of the clues that something was wrong for me was that the OPKs I used didn't seem to give particularly helpful results - one month I got some quite visible lines but never strong enough to be an actual positive... Then in my last cycle I got a clear line on a totally random day, the docs told me that PCOS ladies have a lot of LH throughout their cycle so OPKs won't work for everyone.

Good luck with this cycle, will be interesting to hear how long it is - are u still on that drug (inositol?)?

[ChandlersFarang]

1more, how do they know you're insulin resistant if you haven't had your blood tested? I thought that was how they worked it out? That or the glucose test where you have a test, then have to drink glucose, and then test again. I am gonna have my blood tested on day 2 of my next cycle (if I'm not preg, but frankly I'm not holding my breath for my first cycle!!) and am really interested to know what 'my' PCOS is/what elements of the condition I have, because it seems like everyone's is very different.

I read a very interesting article on Soul Cysters (check it out, an American site for PCOS sufferers with a sticky thread in the forum for newbies, which has loads of good info). It said that you shouldn't be diagnosed with PCOS from just an ultrasound - which is what I had. Apparently a lot of women of reproductive age have ovaries that look a bit PCOS-like, but don't actually have the syndrome. am clinging to a shred of hope that that might be me - until I've had more checks done. Ignoring my random LH levels, weird cycles, etc etc. Wondering if all that could still be put down to me coming off the pill in December - only 6 months ago. Argh!

[KenDoddsDadsDog]

I have PCOS , had metformin and the Yasmin pill a few years before TTC. The GP recommended ovulation kits and I used them religiously for about three months before the smiley face finally appeared. There is now a little smiley face watching frozen next to me !

[1moretime]

I had tests done for testosterone & shbg which were borderlind.
LhFsh was slightly out. Tsh was high so been on thyroxi e for years for that & is now down to 1.05.
Androstendione test was high too...dont kmow what that means, but def no blood sugar done. Xx

[Donttellmetorelax]

Kendodds Congrats on your smiley face!

Chandlers I wasn't prescribed any drug by my GP, because I went on my second month of TTC.

I decided to take inositol under my own responsibility.

www.pcosdietsupport.com/supplements/inositol-and-pcos/

So, yes, it will be interesting to see how long this cycle is. I detected one only surge of LH on day 16, I'm on day 23 now.

I forgot to mention this cycle I started taking Agnus Castus too. I know, I'm going a bit crazy with the self medication, but it's really frustrating when you don't get any help or advice from the doctors.

Next week we are moving, so I hope the new gp will be more helpful.

[1moretime]

Best of luck donttellme xxx

[Muskey]

To all of you who are struggling with your diagnosis it is not the end of the story and in most cases there is light at the end of the tunnel. I am 49 now and was diagnosed in my mid 30swhen I found out I couldn't conceive when trying for a baby.I had the drilling operation and then was placed on Clomid. I had actually finished the course of Clomid when I became pregnant at the grand old age of 38. Dd is now 10. The good news is that symptoms do actually improve after you conceive. Good luck to all of you.

[Donttellmetorelax]

Thank you very much for your kind words Muskey. It's always so encouraging to hear successful stories!

[1moretime]

That is lovely to hear :)
Thank you for sharing..it is always nice to hear of success storys x

[ChandlersFarang]

Yay to Ken & Muskey - thanks so much for popping in and giving us hope with your positive stories!! I know it's totally going to happen for us. Just hope there's not too much heartache on the way there. Been pretty lucky in life to have been healthy and happy - trying hard to keep it like that but this year has been pretty tough already!! I guess we grow wiser and stronger as we deal with these things. self pep-talk alert lol!!!

1more - thanks for posting but I'm not sure what the test result numbers mean yet - am having mine done on CD2 of next cycle (assuming not preg this time) so will find out. All sounds quite borderline for you?

Donttellme - fair play on the self-medication! Can you buy both over the counter? Is there anything else you'd take if you could buy it?!

Have any of you tried acupuncture? I went this weekend for the first time. The doc was lovely and seemed very sure that he could have an impact on the blood flow to the uterus - I have a thin endometrial lining apparently. The stats for fertility success are pretty good after acupuncture, whether it's psychosomatic or not seems irrelevant if it works...

[Donttellmetorelax]

Hi girls! I hope everybody had a great weekend.

Chandlers Keep us posted on your acupuncture and blood test results.

1moretime How is that temping going?

My fertility tracker says I should poas tomorrow, but it's the day we are moving, I deliberately packed the test strips in the bottom of a box so I can't test until Wednesday. :)

[kurama]

Hi will read back later but I was told I had pcos at 18. But nothing was done until a few months ago (I'm 26) my hospital is useless and I've been on 50mg of clomid for 4 months no tests or anything apart from the first 2 months when cysts ruptured around ov time. No idea if I ov or not. Back to see them again in 2 months. Been ttc for 4 years with dh .....

[AttilaTheMeerkat]

Kurama

In your case I would complain both to your GP practice and PALS.

Will the GP refer you to another hospital, its no point if these people are unwilling and unable to work with yourself. Also as you rightly state, you should be monitored whilst on clomid as you have no idea otherwise whether its working or not. Clomid should be used with a degree of caution with PCOS anyway as women can become clomid resistant.

[ChandlersFarang]

Kurama that is genuinely shocking!! I'd make a complaint to the surgery and ask to see someone else for a second opinion. That's really not a good standard of care at all!!

Attila - Who are PALS?

[AttilaTheMeerkat]

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.

You can find officers from PALS in your local hospital.

How can PALS help?
PALS provides help in many ways. For example, it can:

•help you with health-related questions
•help resolve concerns or problems when you're using the NHS
•tell you how to get more involved in your own healthcare
PALS can give you information about:

•the NHS
•the NHS complaints procedure, including how to get independent help if you want to make a complaint
•support groups outside the NHS
PALS also helps to improve the NHS by listening to your concerns and suggestions

[1moretime]

Hi donttellme
Well i am totally confused as i have had a big temp drop this morning 6dpo...so not sure what is happening
Oooh you will have to poas tomorrow...how exciting? How are you feeling? Xx