# Hello and Help!: Was going private but NHS appt has just come though, what now?



## happysputnik (Apr 28, 2010)

Hello, 

I've been a lurker on this site for a while and have replied to a couple of threads but wanted to say hello and ask for some advice from you lovely people. 

DH have been together for almost 8 years and have been ttc for most of that time. I'd had my FSH/LH/progesterone levels tested about 2 years ago and everything was very normal. We got married a year ago and finally decided we finally needed to seek further help. I had my FSH/LH etc restested, again inside normal range. DH went for his SA and we discovered he has poor morphology and low motility, but our biggest problem (and shock) came with my AMH test which I had done privately....under 1. Totally shocked and devastated. 

3 weeks ago I went to the GP who wrote our referral for NHS IVF, telling me to expect at least a 4 month wait for our initial appointment. We decided (given the AMH result) in the meantime that we'd go for private treatment, our PCT allows us to do this without prejudice for NHS treatment. So we had a consultation at a private clinic a couple of weeks ago. We really liked our consultant and decided to proceed there. I've started taking Microgynon and have tried to get my head around the treatment and life for the coming few weeks. I'm booked in for a scan at the private clinic next week. 

Soooo....imagine my surprise (and total confusion) that we have arrived back from holiday tonight to find a phone message from the NHS hospital telling me my appointment is booked for next week - the same day & time as my private scan appointment. I can't believe it - all this time of waiting and a lot of procrastination and now both appointments are on the same day...

I'm looking for a bit of advice on NHS appointments. Given my very low AMH result (and age) I don't want to waste time on IUI treatment and any investigations which might be required before that. Does anyone know how flexible the NHS can be? How receptive would they be if I discuss going straight to IVF? Also, how quickly can things happen on the NHS? I had believed it would be slow but given how quickly the appointment has come through, I'm now not so sure. 

Totally confused how to proceed now. I had been focusing on going privately while we wait for our NHS appointment, imagining having treatment in the private clinic and had been working out approx dates etc already with work / home commitments etc - if all goes well at the scan next week then I was expecting to start more or less straight away.  

Would really appreciate any help / words of advice on the above.
x


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## Sparrow17 (Jun 26, 2010)

Hi Happysputnik,

I was the same age as you when I was referred to the NHS clinic & there was no talk of trying anything else other than IVF, given my age.  Not sure if it would be the same for you or not, but I would imagine so.  As for length of time for appts, I think that would be down to individual clinics but as you've got your 1st appt so quickly, then it sounds like you wouldn't have too long to wait.

What a nightmare that both appts are on same day & how typical!  My suggestion would be to give the NHS clinic a quick phone & ask them how quickly in general do you start treatment after 1st appt.  At least that might give you some idea of what to expect.  It really is a tough decision esp as you're focussed on going private.

Sorry I can't be of anymore help or offer some kind of answers.  Wishing you lots of   &   in whatever you decide.

K
x


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## Caz (Jul 21, 2002)

happysputnik, welcome to Fertility Friends and well done on de-lurking! 

To be honest, in your situation (and this is just my own personal view) I would continue with the private cycle but keep the NHS option open. I am sure, if you contact them you can come up with a good reason why you can't keep that appointment. At this point I would not tell them you are pursuing private tx and wait and see what they have to say. if this cycle works, great, you can tell them, if not then you may want to tell them so they can obtain notes from this cycle to plan your treatment by. But that's all hypothetical and a long way off. As for how flexible they are - that all depends on your own PCT and, to some extent, even your individual consultant so I'd suggest asking on the Location boards stating which PCT this si with and someone may be able to shed some light on what to expect.

Here are some links you might find helpful at the moment. Please do have a look around and explore and start posting around the boards and making friends. FF is a wonderfully supportive community and you can only get the best out of it if you start posting and joining in so, please do so.

*What Every New Member Needs To Know (includes a list of common abbreviations) ~ *   CLICK HERE

While undergoing treatment, you might find it useful to join other ladies having treatment at the same time. The Cycle Buddies threads are just for that. You will fnd a thread, usually with a funny/inspiring name for this year's buddies. Just pop along to the appropriate month and say "Hi" when you are ready to start treatment.

*Cycle buddies ~ *CLICK HERE

You can have a bit of fun or just gossip while you are on FF too so check out the general chit chat / jokes / hobbies area:

*Girl & Boy talk - Community & Fun Board ~ *CLICK HERE

You can also chat live in our excellent chat room

You can also "meet" and chat with people in your local area through the *Location boards*. This is especially useful to find people who may be using the same clinic and or in the same PCT area.

Wishing you lots of luck! 

C~x


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## happysputnik (Apr 28, 2010)

Sparrow17 & Caz,

Many thanks for your replies, information and welcomes! 

I called the hospital for more information on the NHS appointment. All I had received was a random automated phone message inviting me to a hospital I'd never heard of before - no referral letter / appointment information in the post. I just can't believe the 2 appointments could be on the same day / same time. How odd. 

After a frustrating call with the appointment booking dept, I managed to get through to the ACU Secretary who was extremely helpful and gave me a lot of information about the appointment. She told me, once approved for IVF, the waiting list is 2 to 3 years for funding in my PCT. I can't believe it!! I must also start treatment before I'm 39 which, given that's in 16 months, is not very likely! If I'd lived in the adjacent London borough, I would already be too old for treatment - their cut off is 37. 

I'm trying really hard not to get angry and upset about all this. I went to see my GP when I was 35 about referral for IVF and she told me I should come back when I was 37 when I would be eligible - which I did. I just wish I'd known then the PCT guidelines are on the internet - I've now checked them and realise what I was told back then is not correct. Maybe they've changed it in the last 2 years....I just regret not knowing I could double check. Anyway, for the first time I now feel like I may have left it too late, especially with my very low AMH. 

Sooo....I've decided to keep the NHS appointment and go. DH thinks I'm nuts and wasting my time going there. I think I'd like to see what the NHS consultant has to say, if nothing else other than for a second opinion. I've moved my private appointment to Friday and I'm geared up to start sniffing after that all being well. 

Thanks again - now I've stopped lurking, I'm off to join the cycle buddies board! 

x


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## ♥JJ1♥ (Feb 11, 2006)

I would do just what you are doing, going to the nhs appt get the info from them, but also keep the private going, esp if you have the private one arranged. You may find that the nhs appt is just info giving with the nurses etc.
Take all your blood tests and sperm tests along
L x


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## Sparrow17 (Jun 26, 2010)

What a nightmare Happysputnik, I'd have been fuming    As far as I know, 37 is the cut off point across the board for IVF, wherever you live so goodness knows what planet your GP was on 

Good that you've decided what to do tho & sending lots of     to you for whatever comes next

S
xx


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## happysputnik (Apr 28, 2010)

Hello JJ1 and Sparrow17, thanks for the messages.....in a strange way, I'm quite looking forward to going for the NHS appointment tomorrow. Even if it doesn't go anywhere with NHS treatment, I hope I'll learn something interesting. There seems to be so much to learn and I only know one person who's had IVF, and she lives overseas, so I'm finding this website incredibly helpful. 

Thankss again, girls! 

X


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## happysputnik (Apr 28, 2010)

An update following our NHS appointment this morning. 

Was kind of what I was expecting and everything I had secretly feared. The consultant gave their view of my chances of IVF working with my very low AMH as "less than 5%". Why does it always feel like a complete body blow to be given that news? Luckily we'd driven there (I may be the only person to thank Bob Crow today!) so at least I was able to sob all the way home in our own car. 

On the positive side they said we were totally doing the right thing by going private at this stage then went on to say their advice was that we should go for 1 private cycle of IVF before going to donor egg or adoption because the chances of it working were so low. Feeling pretty rotten after all this. 

I felt truly terrible because we didn't want to say straight away that we were having private treatment in case it affected things. Hate that the system makes you go to those lengths. So, another person and another story re. the NHS waiting list. Apparently we need to be on the waiting list before my 38th birthday (which is in 4 months). This isn't what the GP said or what I understood from the PCT website. Anyway, they're going to try and get me on it, even though there's a 2 year wait for funding. 

Somehow I need to pick myself up and start thinking positive thoughts before scan on Friday at the Lister. 

x


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## Mish3434 (Dec 14, 2004)

Hiya,

So sorry to hear you have been messed around so much and given wrong info    Good luck with your Private appt and good luck for your TX.

I just wanted to give you some hope re your 5% chance, this was the percentage I was given when I had IVF at age 34 and 11 months.  Due to the amount of Endo I had I really didn't think IVF would work for me especially given my odds, however, I did get pg with IVF so please don't give up hope.  I also miraculously managed a natural BFP at the age of 37, the doctors don't know everything       

Shelley x


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## Sparrow17 (Jun 26, 2010)

Hi,

Happysputnik, it's understandable that you feel so low about today but as Shelley has said, never give up hope.  I always think that any chance, no matter how big or small, is a chance & someone has to be in that 5% so why shouldn't it be you    Sending you loads of       

Shelley, how fantastic for you that it worked & then to get a natural BFP as well - wow!!!!  As you say, doctors don't know everything.

S
xx


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## Caz (Jul 21, 2002)

Happysputnik,  for the doom and gloom. I have to say though, as Mish says, the doctor aren't always right. I'm an ex Lister patient and I think they're a fab clinic. I know lots of ladies who are poor responders go there because they have a knack of getting good results from ladies other clinics have given up on. They will tailor your protocol precisely to give you the best chance possible, and they ave fantastic success rates too so  you prove the NHS cons wrong and have a successful cycle.

Incidently, if you need to take the car up there again, there's a good cheapish car park in Battersea Park, just over Chelsea brigde on the right. You'll need to take the car for EC (what we did was travelled in on the tube and DH went home after doing his bit and got the car and picked me up when I was ready).

Have you found the cycle buddies thread yet? or the Lister thread? All very valuable sources of support:

Cycle Buddies August Adventures / September Smiles: http://www.fertilityfriends.co.uk/forum/index.php?topic=246103.105 (I moderate on that one so it would be lovely if you joined and I can follow your -hopefully successful - progress.  )

Lister ladies: http://www.fertilityfriends.co.uk/forum/index.php?topic=244599.1005

Loads of luck for Friday.  

C~x


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## happysputnik (Apr 28, 2010)

Wow, thanks so much....

Mish - thank you for replying, your post made me cry! It's just so good to hear someone who's been given a similar statistical chance who has got pregnant with their first ivf cycle and then a natural BFP. That's amazing, well done you! 

Sparrow17 - thanks for the good wishes, right back atcha! 

Caz - Thanks for the feedback on the Lister, it's really good to hear an ex patient's views. We chose the Lister because of their sucess in treating people with low AMH/poor responders and we also live closeby. Although I should say we are south of the river from there (more's the pity, haha!!).  When we went to the initial consultation we parked in that car park and walked over the river. It was a beautiful sunny day and it was so lovely walking over the bridge and back through the park, I love Battersea park. 

Thanks for the info on cycle buddies, I've joined the September / October thread. I thought if I joined the earlier one which you moderate others might have finished their cycles by the time I get started. I have been reading the Lister thread but haven't contributed yet....you're right it has a lot of very helpful info on there. 

Thanks again, girls - so glad I joined this site, the support on here is fantastic. 

x


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