A quick hello

[robbyb]

Ah, Ben, you have to stay positive my friend!

You've had some soul destroying bad news and what you really need now is the time to come to terms with it in your own way.  There's nothing right, wrong, weird or dysfunctional about how you feel and act right now and I don't care just how that is.  I had a month's denial and then got angry, my wife went through an immediate grieving process.  We're all different... however you feel, Ben, accept that emotion and just know that it is normal and fully justified.  (I've had a couple of really judgemental people telling me how I "should" feel and act, recently, and they're wrong, just wrong, and it all stems from ignorance.  You feel how you feel and that is the right way for you to feel.)

It sounds to me that you've got a really grounded and sensible attitude and mindset and I'm kind of pleased for you on that one.   It is nothing but a good thing to stay logical/pragmatic and (where you can) positive...  I think for the most part it'll make life easier for you but (I'm pretty sure on this one, so I'll hope you'll forgive me for being so black and white) I'm certain that your partner will gain strength and energy to continue from you because of it.

Well done, Ben, well done.

I know it's cold comfort at this precise moment, but there are wonderfiul and clever people who can do wonderful and clever things to help you.  Take some comfort in that because I'm sure you're in good hands.

Anyone in the know, and that means everyone reading this (288 hits so far!  See, they are out there!), is right there with you at this time.  Coming to terms with the news that you are infertile or subfertile or whatever is just the most difficult thing to do, and there's no-one out there who can help... or so it seems anyway.

Like Chris says... we are here for you, we really are.  We're real people in the same position as you who are rooting for you almost as much as we're rooting for ourselves... we will gain hope from each others successes and we will mourn for each others losses.  From this point on, we guys are a team... so if we can help or advise or just listen in any way then we will all be reading and we'll answer when we can.

To answer your questions, my wonderful wife and I go to the Bristol Centre for Reproductive Medicine (BCRM) and I couldn't speak more highly of them.  They've been very professional and competent and they've given us real belief in what they can do ... and thankfully they've given us hope for our future.**

So stay strong Ben and the very, very best of luck.

Rob

**Especially Corina the Embryologist.  She's awesome!   

[rocketandroll]

...Cheers Rob, and all


tbh, I think we're gonna have to go with a London clinic or somewhere in the east, just for practical reasons of geography, though thanks for the input.

Had a bad day today, something on TV (someone taking the p*ss out of someone with fertility problems) just made me crack, spent 45 mins just sitting in the bathroom with my head in my hands... then just walked out and kept walking for about half an hour.... came home and the mrs has gone to bed... now I feel really bad for not talking about it, but just felt I needed to crawl up in a ball and just die to be honest.

I'm now having feelings that even if we were to be successful via IVF, it's 'not the same', and not as valid as concieving naturally... like we're cheating or something. I know that's insane, it's just how I'm feeling right now, like no matter what science can do to help, it doesn't change the fact there's something wrong with me. That sounds really selfish, but again, it's just how I am feeling.


Anyway.... dunno what to do now... I feel like I just want to be doing something, something other than sitting around feeling awful.


We've got to wait at least until Jan/Feb next year before we can start our first IVF cycle... for money reasons... and I'm just not sure how to go about normal life for months and months, just not knowing. I mean, at the moment i don't even know if it has any chance of working given my figures... I have no idea. And the clinics we've looked at have a 2 - 3 month waiting list just for an initial consultation... we could wait 3 months just to be told there's no hope... god I don't know if I could cope with that :-(



Anyway, I'm just rambling now.... it's late and I just feel terrible.... need some sleep I think.


Thanks all for your support.



Ben

[mensfe_admin]

Hi Ben,
I have been away so missed your results posting. Not at all good as you say but there are sperm and many are alive so you really need to be asking about something called ICSI - it's where a single sperm is taken and injected into your wife's egg. A bit more complex than standard IVF but has been widely used with good results.
You should also be asking the doc to just check whether there are any possible causes for the low count so you do also need to see a 'male' specialist.
Still everything to go for.
I also agree that your wife also now needs to be followed up to make sure that she is in good shape and that her eggs are likely to be good.
Sheffield is a good centre indeed but there are many others.

I realise you may already have done some of this work up, and be further forward but do keep us posted.

Rob

[rocketandroll]

Thanks all


My wife's in the process of having the tests done at the mo... so fingers crossed.

I had looked into ICSI long before I got the results and knew that was the route we needed to go assuming I had a problem... so we know what's involved.

My biggest worry at the moment is cost... obviously we've looked at a number of private clincs and their prices, but are also very much aware that the price of the treatment listed is not what you end up paying, due to all the extras.

Does anyone have any real-life figures for what a private round of ICSI can cost? My wife has been on a few fertility forums and has come back with horror stories where everyone says that clinics which tell you a cycle will cost £3K end up charging £15K+ due to drugs, extras etc.... she seems to think it's impossible to get an ICSI cycle for less than £10K.

We have about £7K available, I figured that would be enough... if it's not, we may have to wait an extra year or more which would be heartbreaking.


Anyway, we have an initial appointment at one clinic in a couple of months... so we'll see what they say. I am guessing they must be able to give some kind of guestimate of what it should cost at the outset or no one would ever be able to budget for it and they'd end up with half their patients having to pull out halfway through when their money runs out?



Fingers crossed


Ben

[chrisd]

Hi Ben

Have you thought about trying the NHS route.  I know that it is a little longer in the waiting process but at least you could be saving as well and have more chances available to you.

We are currently on the waiting list for egg donation and that is going to cost £4000.  We are having another try at IVF in February which is going to be about £3000.

I know that money situation is hard but I must admit that we have found it quite easy to save the money, we just cut back on the non essentials.  The last thing we wanted was to start using the credit card or loans for it.

Good luck Ben

Chris

[robbyb]

Hi Ben,

I wouldn't panic about the prices being quite that high.
None of the cycles we've had have been over £5K.

http://www.repromed.co.uk/PDfs/BCRM%20Charges%20leaflet%20Apr09.pdf

Obviously, it depends what you need.
I think you've got the fundings, there.

Rob

[mensfe_admin]

Dear all

The HFEA web site gives a list of all licenced clinics in the UK - all clinics will have a list of charges which they should send to you on request (see Rob's Bristol!), most differ from area to area. As some of you have pointed out the problems occurs when diagnosis is not specific and additional tests can be expensive. However your clinician will, when reccomending treatment, discuss all costs with you.

A cost which is often overlooked is the emotional cost to yourselves and your partners which sometimes can be less managable. 

[robbyb]

Amen to that.

[rocketandroll]

...thanks all for the advice and thoughts...

Chris... we are possibly going the NHS route as well, but waiting list near us is over a year, so the way we are looking at it is, if we have the money to go private first and then use the NHS route as a back-up then I guess it can't hurt. I also feel a little moral obligation that, if we can afford to do it privately, we should... I am guessing the NHS have a limited budget for IVF and there are bound to be other couples out there in the same position who can't afford to go private and therefore need it more than us.

I guess we are in a lucky position, which means I should stay positive. We can (hopefully) afford to go private at least once next year at the moment without having to stretch ourselves too much or borrow money off anyone, and hopefully we'll have enough for a couple of go's the year after... that gives us some hope.

We've got price lists from a few clinics which either have good success rates or come highly recomended... whilst they do of course publish a flat cost that states 'IVF + ICSI = £3000' or whatever, several people have told us that the cost of drugs, tests, scans etc (which aren't included in that price) will double, tripple or even quadrouple that cost without any warning. It certainly seems that some clinics are out to con people by stating a flat cost for treatment and then mentioning only after treatment has started that £7000+ of 'extras' aren't included in that price and once you're committed I guess you just have to find the extra money.


Anyway.... gonna go have a couple of initial consultations with clinics and see which one we get the best feeling about. My concern was... if we only have £7K at our disposal... hitting the nightmare scenario of getting halfway through treatment and finding only then that the treatment will cost double that to complete.


I'm just being paranoid I'm sure :-)


We are having every test we could need done before we go to the clinics to save a bit of money... as I said, it's the drugs, scans etc which seem to rack up the costs on top of the basic price... you really need a medical degree to even understand the price lists! It could very well be that we may need a few of the things on them, but without knowing what they are or what they're for who knows!


I'm just waffling now... sorry.


Thanks again all for your support and advice....


I'm heading back to the doc later this week for a few more tests on me that the clinics need, and to hopefully try and get a referal to see a specialist who may be able to give me a reason for the low sperm count... there are a couple of medical things in my past which may well be responsible but it'd be good to chat to someone and get some answers.


Cheers for now!


Ben

[chrisd]

Its good to see that you are staying positive Ben.

Chris

[robbyb]

Do check you local NHS IVF policy, though.

We were shocked to find out that we're not allowed to have IVF here until we're 30 ... no problem, we thought, we'll get a few rounds of IVF under our belts and then when we hit the big 3 -0 we'll just hop onto the NHS list.

But it turns out that if you've had two rounds privately already our Trust won't fund anything at all.

Good design by NHS Gloucestershire to simply deny as many people funding as they can possibly get away with.  *******s.

So, before you plan to go private then go NHS check out what their policy is first.

The NICE guidelines suggest couples should be able to get three rounds on the NHS... my Trust offers one.  IF you are lucky enough to be accepted at all.

If you look back at my original post on my thread you'll see I wrote something about being so incenced by the "care" in the NHS that I couldn't bring myself to write about it... well I pretty much feel that way still.

[chrisd]

Here we can pay private but also be on the NHS waiting list but as Rob says check your areas policy.  Guidelines do say that you should be able to have 3 attempts but we were only allowed 1 round of IVF and 5 rounds of IUI, had we lived a few miles away we would have been entitled to the full amount.

Its all to do with the primary care trust that governs the NHS in your area.  It is very complicated but the government gives guidelines and funding to the trust and then it is up to them how they divide the funds between each area of care within the trust.

Unfortuately some trusts dont give priority to our situation, not very nice but thats the way it is I'm afraid.

Do your research and work out the best options.

[mensfe_admin]

Hi
We fully endorse your advice Chriss and Rob, this will help many that seeks help by reading your comments.

Additional information:
You may also be aware that any couple specifically the female partner under the age of 35 yrs seeking IVF which is not available on the NHS could apply to enter onto an egg share programme.

This programme is very closley monitored and all patients "considering" this route would undertake specific and comprehensive consultation with their chosen clinician and counsellor in order that they are fully informed as to the implications: clinical, emotional, practical, and ledgislations.

This programme (in our experience) does not suite all, however the programme enables those that are fully informed and willing and able to undertake IVF to donate 50% of their eggs in exchange for most of the cost of their treatment being paid for.

This was/is an incentive brought in by the HFEA to help vunerable patients obtain much needed donated eggs in order they may have there own family. And in contrast to give an option and possibly help to those that find funding treatment difficult.

Again this programme does not suite all and is complexed but, according to the HFEA the most popular form of egg donation in the UK. helping 1000,s to have a family.

If anyone requires any further information about this programme, access the HFEA website or contact your clinic.
If you find any difficullty please post a requiste here on your website. We will then ask one of our specialists to reply and post comprehensive information on the programme for you.

[rocketandroll]

Hi all


sorry for not posting, Chris and Rob.... hope you guys are hanging in there, kinda feel like we're the 'three musketeers' now, no one else seems to be sharing, which is a shame.

Anyway... thought it was time for an update...

Things have been a bit more rocky the last month or two with my company than we predicted, and so we have had to decide to postpone our first course of IVF/ICSI until we know we are definitely able to afford it... that looks like it'll be Sept/Oct next year.

As for clinics... we're probably going to go and have a chat with a few but, I have to be honest and say we were being swayed by success rates at the moment and having read all the articles and cut through the controversy I think we are going to have a go with ARGC in London. Given my wife's age and the fact we have a lot of things in our favour they seem to think we have a much better than 50/50 chance of success (probably 70% to 80% based on their current rates for twenty something year olds with ICSI). I know success rates aren't everything and we are yet to visit them and look at the facilities.... but (and I know this is being dangerously over-optimistic) if we can potentially make this happen in one try, by paying a bit extra, then we may as well give it a shot.

I haven't been back to the doctors to see if I can get an appointment with a specialist... I guess I'm just being pessamistic but, as far as I know there are no conditions which cause massively low sperm counts where the doctor can diagnose it, give you some pills and suddenly your normal again... so it seems irrelevant and pointless to waste time trying to find out why I can't have kids naturally rather than just trying to get around the problem.


Anyway... my wife had all the tests they could do on her on the NHS (lots of blood tests) and they all came back that she's healthy and fine... so fingers crossed that bodes well.

We're going to go back and see what we need to do to get on the local NHS waiting list but we know the wait is certainly well over a year so there's probably little point as we'll have gone private before we ever get near the top of the list.


I'm realising now that this is never going to get any easier emotionally, in fact, it's going to get a lot worse... it seems every single day, just when I start forgetting about this nightmare... something or someone reminds me... a friend gets pregnant accidentally, theres a joke about an infertile man on a TV show (what the hell is that about btw? Why is it absolutely forbidden to joke about a woman who can't have children yet it's considered fair game to make jokes about male infertility?) or someone turns up at work with their new baby.... I find myself angry and depressed almost every day as a result and that is just getting so tiring, I actually caught myself trying to imagine what it'd be like to not want kids and convince myself it'd be a burden and an annoyance the other week, because that'd be so much easier to cope with.


Anyway... emotionally not good right now... still dreading telling our families, and wondering when to do it... the trouble is time now... we have to sit around and not even know if it's possible for another year now without being able to do anything towards it, I don't know if I want the awkwardness of having to share that wait with my family as well, if that makes sense... we may just wait and not tell them until we're about to start the treatment? I don't know... if I knew they'd be supportive I think I'd tell them... but my parents seem to have a very strange way of coping with other people's emotional dramas and I fear they'd not be very helpful at all. I think it's hard enough for them to believe I'm adult enough to be married (in my thirties) without them having to deal with the fact we A: want a family and B: there's something wrong with us that means we can't.




So... we're in limbo now.... can't start, can't do anything, can't talk to anyone... just got to live with the fear, depression and uncertainty (and the constant reminders) for another ten months :-(



Hope you guys are fairing a little better.



Will update again when there's anything to update!




Ben

[robbyb]

Hi Ben,

The X-factor final has just started, so I can't really post this second.
Priorities, y 'know?   

Just wanted to let you know I've read your post and I really feel for you, pal.

I'll reply soon.