Frustrated! Can anyone tell me about guidelines for referral?

[MildredH]

Apologies- this is a bit of a long story..

Have been TTC for exactly one year. Had a missed miscarriage at Christmas at 10 weeks. Since then my cycles have been very odd- irregular, sometimes much lighter- where previously they were like clockwork. Had a day 21 progesterone done which was 27 ( apparently should be 30 to show ovulation has occurred). I work as a doctor although not specialising in this area. Spoke to a gynae at work though who suggested a month of northisterone to try and regulate cycle. This doesn't seem to have worked. She also said a referral would be sensible in view of these bloods.

I'm 31 and don't want to waste time continuing to TTC if I'm in fact not ovulating. It feels like we're trying to win a raffle prize without actually having a ticket!

So, we went to the GP yesterday to ask about referral and she says she cannot refer until we've been trying two years! I thought that over 30 this was reduced to one year?

She says to save time when we are referred she's sending us for SA, pelvic scan etc. Also says she'll refer us in Sept as a "special favour".

Although sympathetic she was fairly patronising- basically saying if I was more relaxed about conceiving ( Grrr, if one more person says relax!) it'd happen. I get that, but am fairly convinced there's a hormonal problem since the MC so all the relaxing in the world will not help!

So- does anyone know the guidance re referring? I've looked at NICE guidelines. They say over 30 to do further investigations after one yr. But not really clear on referral.

Secondly any advice? I know Sept is not far away but should we be thinking of seeing someone privately? Does anyone have an idea of how much this realistically costs?

Feeling so frustrated. At the moment it barely seems worth SWI until this is sorted :-(

Thanks in advance...

A "special favour" for referring? More than a touch patronising I'd say.

My understanding is 1 year, and 6 months for over 35s for investigation. I think that's left in vague terms in NICE. Personally I had some half hearted bloods (cd21 when you have no cycles. Bit of a random number generator) and an uss then got referred. The clock seems to get reset at miscarriages though.

Hopefully you won't be waiting too long, but on the chance you may, get used to the frustration. It's slow. You're constantly waiting for the next cd1/treatment cycle/referral outcome. And, more specifically, you're the patient. You don't have control. You have to be on the other side of the desk.

It's shit (from one doc to another).

As for going private, I think initial consultations cost in the hundreds, with costs rapidly clocking up after that. Could you smile sweetly at the patronising GP, take the referral and see where you get to? There will be weeks of waiting for the clinic as well remember.

Sorry for lack of specific help.

Might be worth posting in the gynae forum on doctors.net?
I think gps have a large degree of personal/practice choice in interpretation of the nice guidance. You may get a more sympathetic approach by changing practice? Or even trying a different gp in the same practice.

My gp was happy to do basic bloods (including thyroid, testosterone, prolactin and sex hormone binding globulin) to exclude pcos in view of my irregular periods when I'd only been trying for a few months. They were all normal by the way so new irregularity is not always explainable. Might be worth pushing referral or at least more bloods based on your new irregularity rather than infertility?

Also, were your day 21 bloods done at the right time? 7 days before your period rather than actual day 21. Difficult if you're irregular like me but you can always check for ovulation and then go for bloods 7 days later. If your period was much more than 7 days later then it'll not be an accurate result. Many gps don't understand this so it may be worth a little timing fib to get them done correctly.

I've been irregular since the birth of my DS 16-48 days and been trying for about 7 months with one mc at 5 weeks. I found ovulation sticks hopeless as I can get positives up to 2 weeks before I actually ovulate. Temping gave me a really clear idea of what was going on but unfortunately it doesn't work long term for me as my toddler is currently up at different times. If you can try this then the fertility friend website has lots of useful info to get you started. At least you'll know if you're ovulating that way even if it's a bit of a faff.

I have been going long enough to have a pretty good idea from my body signs and been spot on the last 4 cycles despite irregularity. I haven't read it but lots of people recommend this book as providing the best descriptions to be able to do this. Gives me a feeling of control.

Very best of luck. The waiting is horrible.

Of course, forgot to say. There's a closed "fertility issue" forum on doctors.net. A better option than te open womens health.

As far as I am aware, the NICE guidelines are usually interpreted to mean the GP refers after a year at your age (although I have read on here about MCs resetting the clock).

As others have said, was the day 21 test done at the right time? I understand that progesterone usually peaks at 7 days post ovulation (so it should be done then if you know when you ovulate), if not 7 days before your next period (as this would be 7dpo if you have a textbook 14 day luteal phase. I second the suggestion to temp to get to know what your cycles are doing.

In your shoes, I would take the September referral, unless you have a good deal of money to spare to throw at this. As I'm sure you know, the costs rack up quickly privately. Initial consultation, say £200, more blood tests, depends on what they do but another £200+, pelvic u/s maybe£120, HSG no idea but would expect several hundreds, laproscopy again no idea but as it's surgery well over £1000. I'd get through as much of this on the NHS as you can. That's a lot of money to spend for the sake of a few weeks. And in August, you might not get to see anyone privately instantly as folk will be on holiday.

BTW, you have my full permission to kill the GP who came close to telling you "relax and it'll happen".

I got given a leaflet at my GP surgery which say investigations will begin after 6 months if over 30 and 12 months if under 30. I'm just approaching 12 months (aged 28) and will be completely gutted if we are told to wait another year, so I can understand how you feel. It seems like their is some leeway by each GP.

Do you have any idea why you are not conceiving? (sorry I know you are a doc!) I'm only asking because through charting I am reasonably confident about the reasons I can't get PG and I'm hoping that armed with this info the GP will take me seriously at my 12 month appointment.

Good luck!

'there' is some leeway. Sorry

I had the very same problem, although I am under 30 have been ttc for 15 months, my gp said I had to wait two years I was so upset. A friend that has had fertility treatment before told me to go back, see a different gp preferably male as she has found male gps alot more helpful when it comes to fertility. I did as suggested andhe referred us straight away saying a year was plenty of time.
Basically, go back and see another gp a man if poss, tell them you werent happy. Good luck x

Sorry to hear your story ! Very frustrating! I have been referred I am 31, miscarried march. My 21 was 57 so very high ? Partner has his sample booked for 14/8/12. I think you don't need patronising on this very sensitive subject you need a specialist to listen to you! Could you maybe go for 2nd opinion? Good luck to you on your journey x

Thank you all for replying. It's strange how much virtual strangers can be a source of support! To be honest, I think my husband is fed up of discussing it. Since the appointment on Friday I think I have squeezed every last drop of comment on the 10 minute appt out of him!

Sinkingflame- I think you're right, the clock is reset at miscarriages. The GP hinted at this but seemed to skate over it, which I'm hugely relieved at since resetting the 2 years at December may have finished me off! It is so flaming different being the patient. You feel so powerless and I actually really felt that she wasn't listening to me.

I think the idea of going private is kneejerk and just a way of feeling that I could regain some control over the situation. Felt better when I was taking the northisterone- purely as I was being proactive and doing something. I think its the static weeks that pass that are so frustrating.

Doctors.net is a great suggestion thank you- I will try it. Annoyingly I've just finished a gynae job but my fertility just wasn't something I fancied sharing with my boss! I did ask about the bloods but didn't really want to go further. The GP suggested that had I asked them about Clomid and they'd suggested it that she would have been happy to prescribe it. I found this a bit odd as I think you need monitoring scans etc.. which would have been tricky.

My day 21 bloods weren't based on an actual ovulation date as I think this is the issue- I am not sure I am ovulating. I've tried the OPK's and never once had a positive. I may try temping next.

Magnum- I think I am asking for referral on the basis of irregularity rather than infertility. I tried to say to the GP I honestly wouldn't be on her doorstep asking for a referral if it were purely for the fact we've not conceived. It's more that I have the feeling something has gone haywire with the cycles. I'm 31, I've had a good 15 years of regular, almost identical cycles and then after a MC things have suddenly changed. To me it seems logical that hormonally something has not reset?

I don't want to run down the GP. I think she's probably a good GP and I can't help wondering now since Friday whether she has a point. Maybe I am too worked up about this. Maybe I've convinced myself I am not ovulating and the stress of this is contributing? It's hard not to medicalise things. As they say.. a little knowledge is dangerous.

Anyway- I think for the next month or so we'll get these investigations done.. the SA, the USS etc and hold horses til Sept for the referral.

Thanks again everyone for responding..