Just found out I have PCOS - come and share your ttc tips please!

[theteasonme]

Hi, quick background..

I have always had irregular cycles but put it down to just the way I was made! TTC my DS took 12 months but I didn't know half as much about my body then as I do now & I reackon we got sperm to egg 5 times before I was pg.

Now we're ttc #2 and again, it's been months and months. GP refered us & we had our initial appointment with the consultant yesterday.

Apparently I'm not irregular enough for clomid so that's out. She did an internal scan just to check basic stuff as I had an emcs with DS and lo and behold - ovaries covered in cysts. Cons & I both a little surprised as I have no other symptoms except my cycles.

I've read a low GI diet might help with ttc but my BMI is 22 so I'm not surewhat good losing weight will do.

Any advice would be appreciated

Sorry for the long post x

What does cons intend to do treatment wise if clomid is not an option?. The cystic follicles relating to PCOS do disappear only to be replaced by further cystic follicles.

You should also see the cons on a regular basis also; it is vitally important that the three of you are able to work as a team.

Would actually ask this person outright how much experience she has had in treating PCOS patients as you really do need someone who has both up to date knowledge and vast experience of PCOS.

Verity is a good support group for PCOSers; their website is www.verity-pcos.org.uk.

Would suggest you refrain from either temp charting or using opk's as both are problematic to use if PCOS is present.

Thanks attila - there's not much chance of us working together as I've basically been discharged with a view to having a HSG in 12 months if I haven't fallen pg naturally. Her point was that I have 'proven fertility' as I have a son. I'm expecting a phone call within the week with results from blood they took but other than that I'm on my own (with MN for support!)

Thanks for your reply, will definately take a look at the website.

Hi

I have PCOS, I had a laporoscopy where they removed the cysts that enabled me to ovulate, which did work and I conceived my son, not sure how long the effects last though. I suppose the key point is are you ovulating or not? If you are ovulating then I know of lots of people who have conceived naturally with PCOS. I also know lots of people who weren't ovulating and then conceived using clomid.

I also have a normal BMI and don't really show any of the signs that I have an insulin problem, so I also wonder if I should be trying a low GI diet as well, but I'm going to go the doc and beg for him to refer me for clomid, looking forward to the knock back!

That's ridiculous. Having PCOS doesn't mean that you're infertile. It simply means that you ovulate irregularly or not at all. Once you get some ovulation happening, there's no reason why you can't get pregnant.

[I concede that I don't know the official definition of infertility, but I'm assuming it's not, "could get pregnant but it is very difficult and could take years and involves having sex even more than normal people trying to get pregnant).

I am not wildly enthusiastic about your consultant. He/she isn't exactly giving you a lot of thoughts, options or choices. I am interested in how old you are? My consultant's theory is that lots of younger women with PCOS get pregnant naturally because they are having lots of sex so when that one moment pops up, they're in with a chance. While if you're a bit older (and in your case, with a child already) the chances are that you aren't shagging every day or two and therefore could easily miss the few windows you have.

I have always had hugely irregular periods. I just got put on clomid, even though ironically my last couple were relatively short at 33, 27 and 49 days respectively.

Hi, I'm 29 and had DS when I was 26 so that theory sounds right. We do find it difficult to have sex regularly enough as we're constantly exhausted and there's loads on telly and working full time. My cycles range from 33 days to 70 days xx

Also, according to Taking Charge of Your Fertility, you have more fertile days when your younger. The fertile cm is around for more days in early 20s (around 5 days) so sperm can survive all that time. Once your mid 30s she says that the cm is only around for 2 days per cycle.

bumping

Can you see another consultant? get a second opinion?

I had PCO (s) - no syndrome officially as had none of the symptoms of PCOS just v irregular cycles, and it turned out i wasn't ovulating at all.

I researched the possibilities and chose to ask for Metformin (AKA the wonder drug in this house!) which works more subtley (sp?) than Clomid, you can take it for longer & it works on the underlying insulin levels - not that i have a noticeable insulin-problem actually - and i ovulated within 4 weeks of taking it (and happened to get pg the first time:) )

A friend with exactly the same did the same and got pg v quickly too. Both of us have since had 2nd DC without any tablet-help btw.

It seems to me that you have been fobbed off and should be given the option of more help.
Good luck :)

That's really interesting JKS I've just looked into a private consultation and the nearest hospital is 140 miles away! I just don't know which way to turn. At the moment I'm waiting for a call from the consultant with my blood results and hoping I can enquire more then x

I went private in the end - long story trying to keep it short - and the cons told me i could have clomid or metformin, it was my choice.

At no point (admittedly didn't have a baby already) was i ever told to go and away and wait and see if i got lucky...

Hi ya,

I found I had PCOS not long after arting ttc - I had suspicions before that.

I feel totally let down by my PCT - After a year of TTC I was given Clomid & not monitored properly but told I was ovulating. 6 months went by & still no pg. So Cons asked us what we wanted to do next, I asked for more clomid with proper obs or metformin. Cons said Metformin wouldn't work & Clomid is making me ovulate (I'm not convinced as this is based on 2 blood tests at the most) so he suggested IVF. We filled in the form only for the clinic to turn us down till I have a BMI of 29. My PCOS means I struggle to lose weight amongst other symptoms (it's taken a year to lose a stone!)
In the last 4 months my cycle has gone wild - I'm bleeding for nearly 3 weeks & off for two. I even ended up in A & E cos I was bleeding so much & suspeceted miscarriage.
I've been to the GP over & over about this as Cons has signed me over to Clinic for IVF but they've told me to come back later.
Finally I have another hosp app in Sept to discuss PCOS as thats never been looked into other than scanning me & telling me over & over again I have PCOS!

Good luck

I have suspected PCO(s) after 5 years of problems - too long a story - the doctor has finally decided to look into this. I have a DC already and came off the pill 4 months ago TTC DC2 and my last 3 cycles have been 38, 40 and non existent. BLoods have been taken but dont know where they will go from here.

I honestly don't understand all the difficulties you are having in being diagnosed and treated and I feel for you.

I was originally diagnosed aged 19 by a doctor using ultrasound - irregular periods combined with visible dead eggs lurking was a give away. I went on the pill to manage it. When I came off, I had some blood tests after a year that were somewhat inconclusive and again, I had an ultrasound test to hvae a look. Yet again, the eggs lurking were highly visible, confirming the diagnosis.

I took the Clomid and at Day 10 went in to the doctor. She didn't take tests (which I did think was strange) but again, did an internal ultrasound showing one large and one small follicle and a healthily thick womb lining, confirming that things were on track.

Of course, things can still go wrong and so she's told me to come back in three months to make sure that there isn't something else wrong.

If possible, try to find a consultant who specialises in fertility treatments and ask for ultrasounds to "see" what's going on.

I have PCOS too and was told to wait a bit and did a little bit of reading around it.
I used Agnus Castus to try and regulate my periods naturally and also spent a small fortune on digital ovulations kits. Good news is that it worked - it took a long time to see the smiley face on the kit but doing the deed that day did the trick.
Hope you get either a second opinion or things happen soon for you.

FairyGodmother & others - i can't emphasise how much I believe in Metformin, can't remember what forum i was on at the time (my pre-MN days ) but there were tons of stories about it.

It is not recognised as a fertility drug, as such, but seemed to help insulin-unbalanced PCOS sufferers to get pg.
I can't remember all the research I read back then but it seems to work in the background and correct your cycle rather than hitting your ovaries with a hammer and forcing the egg out.

Also, if you are on Clomid beware of hyperstimulation, there are different limits in different places but some docs say 6months max before a break.

I didn't have a period for a yr and was told it was because i was fat by my GP.
I went back for second opinion (although i am over my BMI) who sent me for scan. Found PCOS but was told I would need to lose a certain amount of weight before they would agree to give me clomid. I lost weight and conceived without it.
Now i have a 5mo but have put the weight back on and once again - no periods, no ovulation, no DC2
Am going to try to lose weight again but i find it so difficult. I'm sure the PCOS must be made of lead!

Hi

For irregular/long periods, there's some suggestions that soy isoflavones work:

www.twoweekwait.com/newsletter/2006-01/

ABSOLUTELY read up on it though, as soy can also cause infertility unless you take it the right way.

Metformin is not recommended for improving fertility these days, unless you've got diabetes or glucose intolerance. It was thought a few years ago to be the holy grail for subfertility related to PCOS, but sadly no more. See here and here. I appreciate some people have had a positive experience of it.

I second the miracle of Metformin.

I was prescribed it by my very clued up GP. Within a month my periods were every 28 days, I was ovulating and I got pregnant the first month.

My consultant recommended I take Met for the first 12 weeks to minimise the risk of miscarriage and I now have a healthy 16 month old son.

I am now on the met again in preparation for baby number 2. I can't recommend it highly enough and I know four other women it's worked for too.

I have PCOS and me and my DH were TTC for 3 years. GP eventually referred us to fertility clinic back in May this year. We went along to our first appointment 5 weeks ago. I was given an internal scan and they found I was 6 weeks pregnant. We got the shock of our lives

Just want people to know that there is always the chance of a miracle. :)

JKS I was prescribed Metformin on Tuesday so fingers crossed I'm finally closer to my baby dream!!!!

Can I ask, those of you that took Met - what dose were you on? My Cons has it streadily increasing 1 a day this week, 2 next then 3 to carry on.

I was diagnosed with PCOS aged 31 in 2007 and our happy accident came along just over a year later! Now though, after stopping breastfeeding PCO symptoms came back with a vengeance and we decided to try for a 2nd at Christmas and are still waiting!

My BMI is around 29-30 and I started Metformin in April, and initially lost some weight, but have been struggling to up my dose past 500mg due to it making me very sick sometimes and am going back to the doctors soon to see if they will prescribe me slow-release Metformin or explore what other options are available. I seem to have plateaued now in regards to Metformin helping with the symptoms, as I have just had a 44-day cycle (all of my cycles since April were approaching the norm again), my weight has shot up again and am suffering with low moods, carb cravings and hirsutism again! (Lovely!!!)

OP, my advice would be to ask for a second opinion (on the NHS!) as you should be able to find someone a lot more sympathetic to your plight... surely...

Hi tea!
I'm being sent for an internal scan as I have been ttc with no luck and irregular periods too, also my bmi is 22!
If you don't mind me asking, did you find out at the scan about the cysts? I'm getting really mucked about at the moment by the gynae unit - they forgot to send me a letter for my appt, so I missed it. Have phoned to make another one but flipping doctors receptionist won't give me the number and hasn't returned my calls :(
I'm two yrs younger than you btw,
sorry for the hijack!

Forgive me for being disgusting but here is how I conceived naturally (advice from health visitor). I was diagnosed with PCOS when I was 25 and went on the pill immediately. When I wanted to conceive I came off the pill and started analysing my vaginal discharge. If it was thick and cloudy it would not be suitable for helping the sperm on their way. If it was clear and strechy, this was the best time for TTC. During the 8 or so days of clear strechy stuff I had sex every other day and my (much wanted!) dd was conceived the first month of trying. I appreciate this advice doesn't work for everyone but my cycles pre pill were 80 days or so so simple advice like this was absolutely invaluble! Good luck.

Hello everyone... I'm just looking for some advice please?

Been TTC for 18m and nothing. PCOS diagnosis 5 years ago. Have lost 2 stone to get BMI from 35 to 29 (reletively easily so not sure if Met would work for me?)... But still nothing. Cycle 33-49 days long. Had blood tests done by GP but so far no sign of ovulation.

Have a Cons apt on the 18th and i'm a little anxious as dont know what to expect? Will he send me away and tell me to lose more weight? In that case what should I say? I'd really appreciate some ideas! Good luck theteasonme and everyone!x