NHS or private? 17 months and still no bfp

[ShortyK]

Hello all,

I posted this in the infertility section but thought I might try here too...

I'm sorry in advance if I am posting in the wrong place, or if there are already similar threads but I would really value any advice people have to offer.

I'm 29 and my husband is 32 and we have been trying to get pregnant ever since we got married in December 2013. After 17 months we are still yet to be successful. I found out last November that I have pcos and my husband has also had 2 sperm analysis tests which both say he has low motility. I have only just received a letter for an nhs referral for a 'pre assessment' appointment at the 'nurse led fertility assessment clinic' at the local hospital in late August!

I feel as if I have been waiting so long and the thought of waiting another 4 months feels rather frustrating.

Are any of you in a similar position?

Although my doctors surgery has been very helpful, when I questioned whether or not to go private, they said I was the right age to qualify for nhs treatment and that it can all get very expensive very quickly when you are footing the bill.

Also, with my pcos and my husband's low motility will they prescribe a drug like clomid, or will they suggest going straight for an ivf-type procedure?

I don't know what the best decision is. A friend of mine has pcos, went private, got prescribed clomid and 4 weeks later was pregnant! I know I might not be that lucky but not sure I have the patience to wait 4 long months before even being seen by someone on the nhs. Or should I just sit tight, focus on healthy eating, exercise, etc.

Any thoughts, advice and suggestions would be most welcome.

Thanks,

Shorty K

Hi. I waited 12 weeks to get my NHS referral letter only for it to say my initial consultation wasn't until July.
I was devastated! DH convinced me to phone to ask for a cancellation and they has one for 3 days later!
Went to that appointment a couple of weeks ago and because we had already had all of the tests etc, and I had my PCOS diagnosis and confirmation that I wasn't ov'ing..... they prescribed me progesterone (which I'm in the middle of now) and 6 months of clomid on the spot!!!

I know not everyone has such great experiences of NHS referrals but my advice would be to phone each morning until you are able to book a cancelation!

Also we have a "TTC with PCOS" thread on the conception board with lots of ladies in a similar position to you! We are all super friendly.... come join us if you like? X

Hi Rosebud,

Thank you for sharing your experience. You have given me a real boost in hope I tried to ring today but got no answer, though that might be because of the bank holiday. I'll definitely keep ringing though. I've heard some great things about the nhs once people actually get seen so I guess I'll just try and be patient.

I'm fairly new to the whole mumsnet thing but will def check out the 'TTC with PCOS' board. I've tried not to read too much about not getting pregnant quickly and attempted to take the relaxed approach but as my 30th birthday draws ever closer, and month after month of not falling pregnant, I feel like I need to find out as much as possible!

Shorty you could be me!
I'm also 29, turning 30 sooner than I would like and ttc #1. Cycle 19. I'm slightly further on than you in some ways as we have had a couple of appointments, but agree with you it is so slow on the nhs! Do you know what your nhs entitlement and referral criteria is re IVF etc? Xx

Shorty how quickly you get treated in the NHS really does depend where you are in the country. I'm in Wales and had my first NHS appointment at the FC in September 2013. We were then told we'd need ICSI over a year ago. I'm still waiting and will be lucky to start treatment this year (we've since had private treatment which sadly hasn't worked). On the other hand, I have a friend in Gloucester who had her first appointment at the exact same time as me who then had successful IVF 4 months later. Definitely find out the timescale in your area so you can make an informed decision. Although being only 30 you do have time on your side - I'm started TTC when I was 34, I'm now 37

I rang up during my lunch break today and I now have an appointment in three weeks! I am so happy! I'm also a little unsure about what will happen.
I had a scan in November to diagnose the pcos, had a blood test to see if I was ovulation (no such luck) and my husband has had 2 SA done.

Will it just be a discussion about what happens moving forward? I like the idea of getting progesterone like you Rosebud! Has anyone had that think where they put dye in your fallopian tubes? What did they say at your appointment Sammylou?

I have been doing some research on what I'm entitled to Sammylou1 and Happylass and I'm in a bit of a predicament. I have recently moved and now technically should be registered with a new GP in a new PCT but because of my convenience and proximity to work I never left my old GP. I have now found out that if I register in my new area I would be entitled to 2 fresh cycles of IVF/ICSI. If I stay registered to my current GP (which I know I not supposed to) they will only fund one. My dilemma is around when to inform the docs/hospital of my change of address as I don't want tit to effect any treatment that may start in the next few weeks/months.

A year is a long time to wait Happylass. Did anyone give you a reason for the wait.

Also Rosebud, I plan to join the TTC with PCOS thread but want to read it first. I got up to page 14 last night but fell asleep at 1am. Needless to say I slept through my alarm this morning!

My first appointment at 14 months ttc we were told to go away and try for another four months after which I had an ultrasound. Then they said next step was the HyCoSy (dye in tubes) but there is no nhs appointment until September so I now have it booked for Thursday privately. Things might be different for you though as you have a diagnosis, I suspect you will be prescribed clomid/progesterone straight away. Xx

And with regard to switching gps I think if wait until after your appointment so as not to confuse things, but def change after that incase you need the IVF! Xx

sammy that's terrible.
What part of the country are you?
I had to wait for 17 months to get as far as the HyCoSy.
They then sent me away for 3 months to keep trying (which doesn't help when you're not ovulating). I toyed with the idea of going privately at every stage but was concerned of the costs and DP said no.
Do you mind me asking how much the HyCoSy will cost?
They gave me some hope after mine by saying its highly likely I will get pregnant next cycle which stopped me from going privately.
Luckily I have my NHS appointment for clomid on Monday which will be month 20.
Fingers crossed the clomid works.
Good luck with your hycosy.
Cani ask how you went about going privately? This was another thing which stopped me. I didnt know what to do. Is it through your gp or do you approach a fertility clinic directly?
If I don't get clomid on Monday I will go privately.

Hi Shorty, I'm not in quite the same position as you as already have a dd (3.5) but we have been trying for no. 2 for over 2 years now. We were referred to a fertility clinic and yes the first appointment took a couple of months to come through but within 4 months I'd had various scans, blood tests, and a lap and dye. Next follow up isn't until June and we've been told by letter from the consultant to give it 6 more months then go for self funded ivf.

If I'd had the money I would have gone private as I hate waiting for things but we don't so I'd rather use whatever is available to me on the nhs first. If you do have the funds available and want to be seen as quickly as possible then go for private. Have you had any of the basic blood tests done via your gp? Might be worth doing that before you spend out on private as they can refer you for bloods to see if you are ovulating and all your hormone levels are ok. Would give you an idea then of what you are facing?

Ps. Mumsnet is brill for threads on this kind of thing! I couldn't do without it!

Vap - it's costing £425, but I think this varies from area to area.
I just called the clinic directly, they request your notes from the nhs if needed but you don't need a referral. It's been so easy so far, and they will refer us back to the nhs afterwards so if we need IVF we can still have our nhs turn. Xx

Shorty I'm in Wales where basically the NHS is in a mess. It took 18months of trying before we were referred for IVF. Then it's a minimum of 12 month wait, maximum18 month wait after referral but I've heard from others that it's likely to be longer. Our appointment next month is only an initial consultation - we could face another 6-12 month wait after that. We've already spent £10k on private treatment as here you are still entitled to NHS treatment if you've had less than 3 private cycles. The good news for you is that I've heard the situation is much better in England. Your dilemma is a tough one though as you will kick yourself if you stay with your current GP and then you need more than one cycle. Could you also try to find out about the situation in your new area? Good luck x

I just reread my last post and saw all the typos! Sorry but I think you all got my drift.

I hope I get clomid straight away but do they usually do the hycosy first? Or do you not have a diagnosis of pcos Sammylou?

Vap, I find just a little ironic (and slightly irritating) that they said go away and try for another 3 months when you are not ovulating! Good luck with your clomid appointment. I hope they give it to you. Do they not like prescribing it on nhs then? Or is that the first thing they give to people with pcos who are ttc.

Brindler - is a lap and dye the same as a hycosy?! (Sorry still finding out about all the procedures.) I've had an initial blood test to see if I was ovulating, a scan to confirm the pcos and DH has had 2 SA. Haven't had anything else. Think I will see what they suggest at this appointment in 3 weeks and ask about waiting times. If it's a matter of months before they'll do a hycosy or consider giving me clomid, I think I'll see if I can get it done privately to speed things along and try and go back to nhs for ivf if needed.

I also think I'll wait until the first appointment, see what they say and then inform them I have moved.

It's so useful to hear about other people's experiences and what to expect. I'm certainly learning a lot about the whole process on mumsnet!

Happylass - I didn't realise that treatment varies so much depending on where you live. Really hope it all works out for you. Let's hope your wait is 6 months and not 12.

Shorty, no I don't have pcos so I'm not sure whether you'd have to have HyCoSy when you already have a diagnosis.

I think lap and dye/HyCoSy/hsg are all variations of the same kind of procedure. Xx

shorty it was so frustrating when I tested day after day without ovulating! I cant believe I listened to him when he said he was sure I'd ovulate that month. Just a way of getting rid of me I think. I don't know what magic they thought would happen...
I don't have pcos by the way, well not that I know of...
I have never had any test results back at all though so have no idea. That's one of the things on my list to ask - please can you share with me and explain to me all of the results from all of tests including dp's sa. I'm not leaving that room until I know every next step and timescales.
So many questions on my list...
I have been a little dazed when having my 2 appointments although it doesn't help when they are always shoving stuff up you, not too conducive to thinking.
They seem to give it to a lot of people I think some parts of the country delay you more than others. I have read people on here who seem to have had it prescribed at the 12 month mark so I don't think they will have had other tests...
Who knows?

There's seems to be so much variation depending on the gp. My dh's doctor gave him a telephone appointment saying everything was fine, then I looked at the results and against pretty much everything they tested for it said 'abnormal'! I was so shocked but I guess it's harder to explain over the phone and my dh was probably not forthcoming with his questions. Or he was hearing selectively!

I think it's a good idea to write questions down before going so there is something to refer to if one's mind goes blank but my two main questions I guess would be 'What happens now?' and 'How long is the wait?'

I hope they suggest clomid for me and not straight to ivf. I would be scared that ivf might not work.

I want to be pregnant so badly. As everyone here does x

Hi shorty. A lap and dye is different to hysteroscopy. Laparoscopy they cut through your belly button and insert a camera to look around/treat etc, hysteroscopy they literally go 'up' you through your cervix to investigate that area. Or so I understand it anyway.

We had blood tests/sperm test with gp (all came back normal, other than dh's morphology). Our first appointment at fertility clinic (St Albans) was with a nurse who took a full history from both of us. Second appt with consultant who gave me an internal ultrasound and who diagnosed pcos and endo and said he wasn't worried about dh's morph. Lap and dye and hysteroscopy were done just 3 weeks later when they decided I didn't have pcos or endo after all!

Hope that helps

We've now been told to try for 6 more months then go for self funded ivf

Shorty did our TTC with pcos bore you so much you fell asleep?! It will be good to have you over there. There are a few of us at very similar stages.

I was diagnosed with pcos at 15 yrs old. When I went for first consultant I had already had ultrasound, dildocam, 1 SA, and 10 blood tests (one per week to prove no ov... at my GPs request). The consultant said we had clear evidence that I was not ov'ing so there was no need for the tube checking thing. She prescribed progesterone and clomid on the spot!

I think I was extremely lucky with a very sympathetic and pro active consultant! She was amazing!

Brindler - Thanks! After burying my head in the sand about my inability to get pregnant and my pcos, I'm trying to find out all I can so that's really useful to know. If I'm lucky like Rosebud, they might just give me clomid!

Rosebud - Ha ha! I'm a teacher which means I find it hard to check mumsnet during the day and with SATS tests looming, it's really busy at the moment. Decided to read and respond these posts first then read 'TTC with pcos'. I fell asleep last night at page 17 so I'l almost there! I'll be posting very soon. :)

Have you tried any supplements? Inositol is supposed to be brilliant for pcos. Loads of others to consider too - vitex, soy, b vits. Lots of positive stories with all (although not worked for me yet!)