PCOS/Long cycle-ers - place to moan/chat

[gwenabee85]

Was surprised reading a few threads recently that there appear to be quite a few of us in the above situation, but I can't see any chat threads for us, so thought I'd start one!
I'm 27, ttc#1 and currently on CD89 :| I was only diagnosed with PCOS in August, and have got a further appointment to 'discuss' what's next in December.

(TMI alert..) I've been having ewcm for about two weeks on and off now :/ oh, and I was temping but stopped about a month ago as I think it was stressing me out too much!
anyone else?

Hi everyone! Do you mind if I join you?
I am a fellow PCOS'er! We are TTC no 2. DD is 11 months old, we have been trying for 6 months with no luck. I took clomid to conceive DD and I also took it the last 2 cycles and i havent ovulated. I have now been told I am clomid resistant. They have recommended me for a trial of a new dose of injectables specially for clomid resistant PCOS ladies, so I'm just waiting to start that. However, I had what I thought was AF on Monday and tue, but it kind of tailed off so I did a preg test (just in case lol) and of course it was negative, later that day I got loads of EWCM so I did 2 different ovulation tests, both were positive! That was day 40. Could I really have ovulated that late, and if I did will everything be ok.... Stuff I've read says its bad to conceive past day 20. I did have a false positive ovulation test earlier in the same cycle as I had a blood test to confirm ovulation but it came back negative, but I really think this positive ovulation test was correct...
It's nice to know there are others in the same boat, it's a lonely place to be TTC with 50+ day cycles!

gwena, that's so annoying they won't give you the results immediately! The first time I wanted blood results printed out at the GP, they had to get permission of the GP, but now that he's given it they just print it out immediately. I don't know why that consultant is being so awkward.

Apparently your blood results can be fine but you still can have pcos. Don't ask me how though!

tanya, I have not heard that ovulation after day 20 is bad. I think it's fine, it's the same process isn't it, where you just get your oestrogen/lh surge later on, which matures an egg, it just happens later than normal. I have heard a few stories of women having healthy pregnancies/baby's from ovulating later on.

Gwena, that must have been so annoying for you. For her to have the results and not let you have them. Hopefully you'll get the results and the appointment through soon! What does the accupuncture help?! Also, just to add all my blood tests were "normal" but the scan picked up the PCO.

Have my appointment later this week, hopefully I'll find out how they intend to proceed....

Does anyone have thyroid issues causing them to have long cycles?
I'm 6 months off the pill and I've been seeing a nutritionist since Nov to try and level out my hormones nutritionally (since GP wouldn't do anything to help me). It's costing me a fortune and I am banned from sugar/dairy/yeast (all in time for Christmas!)
Anyway, she has suggested since my cycles are still in their 40's, acnes still bad, BBT is low and mood swings are horrendous I may have a thyroid issue and wrote a letter to my GP requesting certain blood tests.
GP got the hump and said she wouldn't test for a few things requested (Vit B's and D) and booked me a blood test for progesterone and thyroid on the 30th (said it was non urgent).
No one takes my concern of PCOS very seriously, I'm thinking since i had a laparoscopy in 2009 which didn't show anything up.
The GP dismissed my low BBT as nothing and said acne and mood swings would be down to our stressful family situation.

tanya, I don't know about ovulating late either, sorry! the information on the net is all so conflicting and doctors are really weird about talking about it. just keep dtd regularly I guess!

and tell me about it blamber! :| the results still haven't turned up, I'm guessing they're not going to now.

Dinah I had thyroid tests when I had my day two tests and they came back normal so I'm not much help I'm afraid, but I've read they're a big issue with PCOS so they should do the tests as a matter of course anyway, push your GP!

So I went to my acupuncture appointment but didn't actually have any acupuncture. She used it as a consultation session to start with, and when she heard how irregular my cycles are she said she didn't think acupuncture was going to be strong enough to help yet, she's suggested I try herbal medicines first, then if I want I can move onto acup. To be honest, I don't know what to think of it, I'd have to go EVERY week, on the same day, she said I couldn't miss a week, (and I'd be charged if I did anyway) and it's £40 a week! :/ I've told her I'll think about it, it's so much money, for something that I could essentially try myself (agnus castus?)

AF arrived on Weds so this cycle was 54 days, and the letter from the hospital to book my hycosy arrived today, so I don't know what to do, my DH is a complete cynic when it comes to alternative medicine, and I haven't told anyone in RL we're ttc so I'm having a stress!!

how's everyone else doing?

DearDinah

I would change GP practice seeing as this one is so unhelpful and I do not think this nutritionist is being all that helpful either to you apart from it costing you a small fortune (they're good at taking money).

What you describe symptom wise is more akin to PCOS than possible thyroid issues although these should be looked at as well.

A decent non woo website re the thyroid gland is this one www.thyroiduk.org.uk/tuk/index.html.

The blood test that should be done in any case is a day 2 to check and compare your LH level against that of your FSH level. These two hormone levels are important as they kickstart the ovulation process; if these two are awry (which they often are if PCOS is an issue) then ovulation is affected.

May I ask why the lap op was done initially?. I only ask this as this is usually done when endometriosis is suspected.

You really ought to be now under the care of a gynae at a subfertility unit.

Hi ladies.

I was diagnosed with pcos nine years ago. Ttc for five years no luck. Met a new partner and was pregnant 18 months later but sadly miscarried. Ttc again but periods all over the place sometimes bleeding for a month other times il miss one , other times ill have a period every ten days.

Had my hospital appointment where they scanned ovaries and im booked in for the scan where they flushe dye through your fallopian tubes?

I bought ovulation strips but I stopped using them because of disappointment and I was also pregnancy testing every time I felt sick!!

Very stressful especially as it seems everyone else is getting pregnant. Friends who had miscarriages around the same time are celebrating babies firsts birthdays and looking forward to births and I feel useless like something is telling me that you can't have everything you want.

msvee

It sounds like you are being booked in for a HSG which is a tubal x-ray. Its a useful test to have done as it can give information not easily accessible by other methods. Deformities INSIDE the tubes can only be seen on such an x-ray. The procedure should not be at all painful providing the dye (a teaspoonful or so is used) is injected both slowly and carefully. You should be given a couple of painkillers beforehand. Do wear sanitary protection afterwards as that dye does come out.

Have they tried either using injectable drugs or even offered laparoscopic ovarian diathermy surgery?. Either can be helpful to those with PCOS although no one therapy or treatment resolves PCOS (as those cystic follicles do return).

Hi attila. Yes that's the procedure . Thank you for giving more info.

They haven't tried anything. I was just referred to the hospital in September.
Do they usually put people on metformin in the first instance or do most people get referred to the hospital?

Most get referred to the hospital first.

Not all PCOSers are put on Metformin, it is possible to have PCOS without actually being insulin resistant.

Just catching up with this thread....I've been referred to the hospital and now have to wait for that appointment. Clueless as to what happens next as the GP wasn't too helpful!

hi lam, you've had the initial tests haven't you? so is it a fertility consultant you've been referred to now?

That's right gwenabee on both counts. What's the first steps there? Hows things with you?

As far as I can work out, it's hycosy then if that's ok, and SA comes back ok too, it's see if metformin/clomid will be any good. That's what the gynae consultant has said to me anyway, I guess it varies slightly from area to area, but should be along similar lines :)

Thanks!! SA back already as normal or above average - proud DH! Right of to google hycosy.....

Haha, fingers crossed for mine too, he wasn't very impressed with the whole procedure!
The thing with hycosys is a bit stupid (in my area at least) in that it's supposed to be done in the first half of your cycle (so you're definitely not pregnant) but when I rang to make an appointment on dec 16th their next available one was jan 28th. My cycles are irregular, that's the whole bloody point! Grr

He wasn't impressed when I produced the pot but then just got on with it. Think the form caused him some confusion! Fingers crossed your other halfs result cones back good. That's so stupid!! Guess the main thing is that you have an appointment. I have had no AF since coming off the pill so like to see how they will work that one out....

Just a quick question re over the counter pregnancy tests and blood tests. It's my 48 and still no period. My periods are usually 28 -36 days long, with the longest ever being 40 (I never went over 36 apart from that one time). I think I ovulated around 20dc, and had a go ttcing. I had spotting every day 25- 31dc, but pregnancy tests (I did two, most recently clearblue) are negative. I called the fertility nurse I've been in touch with (I've got pcos) and she said as tests negative, she will give me pills to bring up my period. When I asked about blood test, she said no need to do that as urine tests are very sensitive now. As for the spotting, she 'doesn't know' and apparently is not going to do any tests. Should I go for blood test (private?) or assume pregnancy tests are correct and take the pills? As for the spotting, I hoped for these to be 'implantation bleeding' but of course could be anything, should I insist on tests being done to check hormones etc?