New and confused about IVF process

[pontsian]

Hi,

I am hoping I might find answers to some questions that I am struggling to get elsewhere.

I am 35 years (same as my husband), tried for a baby unsuccessfully with my husband for 5 years at 32 finally diagnosed with severe endometrius and had my left fallopian tube removed last year aged 34. My remaining tube is badly damaged and at high risk of ectopic. My husband and I have had all tests and everything else is fine with both us. My consultant gynae referred us for IVF and said we should be seen within the year because of my age, medical history and no children for either of us. Yesterday I received a letter from her saying waiting time here in Wales is 12-14 months. I really have no idea how the process works and I am disappointed at the wait. My questions if anyone can help are:
Is there anything that can be done to reduce waiting times?
How long after an initial consultation would it be until treatment actually started?
My parents have offered to pay for us to go private but we feel reluctant to accept because of the amounts involved but would people recommend this route over NHS?

Any information would be really gratefully received as I am totally confused by it all and have no idea in the slightest how it all works!

Thanks in advance

Gosh - that's a long waiting list. How frustrating.

I don't know how NHS Wales works, but I do have two suggestions. Have you had your egg reserve checked? It's usually a blood test called an AMH, and a transvaginal scan to check follicle count. This - alongside your FSH - gives a reasonable indication of your fertility. If you've not had it done, I would recommend you do so. The results will give you an idea of how much time you have to play with. If all's looking well, there's no harm in working your way to the top of the NHS list.

The other thing I'd do is get in touch with your health authority and ask for a copy of their funding guidelines. Check to see if having a private round of ivf invalidates your NHS attempts. I know the rules vary by area. If it's ok, you could pay privately to have a round whilst you're waiting. This is what we're doing (but for different reasons as my bmi is too high for NHS treatment atm).

Hi there I am also in the same situation with ivf wales. I am 35 soon to be 36 in a few months. We have only just been referred and are looking at a 12 month wait before we even get a consultation and then I imagine they will want to carry out some of the tests again. I would say it would be between 18months and 2 years before treatment begins

In Wales you are allowed to have 2 private treatments before you are excluded from nhs treatment so we are just starting ours next month. We are going abroad as its so much cheaper and the clinics and success rates are also better. We are looking forward to it and treating it as a mini holiday as well. We are paying £1450 for ivf with icsi and £650 for my medication. In the UK we were going to sign up to a 2 cycle deal which would have cost around £8k with medication. I worried about the cost and just couldn't justify it which is why I looked into alternatives

Good luck to you in whatever you decide to do

Hi,

Thanks so much for your replies.
@Tootsiepops - thank you and yes very frustrating. I am pretty sure I have not had my egg reserve checked - I've had so many tests over the last 3 years its become confusing. I will make an appointment with my GP to get this organised.
@Lucieloos - Thanks for reply. Sounds like you and I are in the same boat. I am in South Wales, so would you know if the 2 private rounds before being excluded would apply to me? I agree with the time frame involved which is why we are both so disappointed. Good luck with your treatment abroad, its never crossed my mind going that route. I would be really nervous about going abroad for treatment but with the massive cost difference it is something I would consider. Any chance you could PM me any details on where you are going or a website for me to look at. I would really appreciate it.

Thanks again ladies

Hi there, yes it applies to the whole of wales. Although looking at it again it may even be three treatments but I say two to be on the safe side. This website has more details

www.infertilitynetworkuk.com/niac_2/nhs_funding_in_wales

I couldn't get my amh tested on the nhs so had it done at CRGW in llantrisant. They are very good there and the tests are done really quickly. I had it as part of an infertility investigations package that they offer. It meant that I had the amh test and a pelvic ultrasound to check for cysts etc and dh also had a semen analysis. I think it was around £150 for everything or you can get just the amh done for £80.

I will pm you details of my treatment abroad x

Hi Pontsian. I too am in Wales and the IVF situation here is pretty grim! We were referred to IVF Wales in late April last year and told that there is a minimum 12 month and maximum 18 month wait (but more likely to be 18 months). When I rang up the Heath in May to check that the referral had been received I was told we'd be seen in 6 months for an 'initial appointment' (not treatment). My DH rang in November to find out what was going on and was told that they were running behind and we'd be seen in January. I rang again about 3 weeks ago to be told we'd hear from them in 3-4 weeks - I'm still waiting and rapidly losing faith!!
In the meantime we've had 2 unsuccessful cycles of ICSI at CRGW. You are allowed 2 and still entitled to NHS treatment (3 excludes you from treatment), although the private clinic did tell us there's no way of the NHS knowing how many cycles you've had
I did have my AMH tested on the NHS here (Royal Glamorgan) so worth asking.
Hopefully I'll be hearing from IVF Wales shortly and will get a clearer answer as to when we are likely to be treated. Would be good to keep in touch with others in the same boat. Good luck!!

Hi Happylass

Thanks for the reply. I wish I could say I was surprised to read about the long waiting times and all the confusion but I am not sadly. From my diagnosis through to the operation took over 3 years with lost notes, appointments cancelled and a general mess around so to hear the same about the IVF process is extremely disappointing. Today I booked an appointment with my GP for next Monday to see about getting my egg reserves checked as suggested above, I am hoping to query the long wait involved as well and get some answers or at least pointed in the right direction. My gynae told me nearly 2 years ago that IVF would be my only option and I was under the impression that I had been referred then, clearly I was mistaken so I feel like I have lost a lot of time. I just have a horrible feeling that even if my GP transfers me for the tests it wont be for another 6 months.
My husband and I are seriously considering the private route because of the waiting times.
Good luck with everything for you and hopefully you'll here something soon xx

Pontsian I've just turned 37 so we felt that we just didn't have time to wait. Unfortunately the private route hasn't worked out for us, (although we have got 1 embryo still in the freezer) so we are now reliant on the NHS. I know there was a huge cock up by WAG a few years ago which meant that South Wales was just operating on 1 IVF clinic instead of 2 for a long while. This has now been sorted and given as you were told 12-14 months I'm hoping that waiting times are starting to come down. Having said that I don't regret going private, however I would definitely look in to going abroad if you can as we've done some research lately and the difference in cost is astounding. Not an easy option for us though as I teach and it would be difficult to time to coincide with school holidays. I'll let you know if I get any further info on waiting times. In the mean time there's a thread over on the Conception board for the over 30s TTC #1 if you fancy it? We've all been trying long term and have a wealth of experience between us. Would be good to have a fellow Welshie as I'm somewhat outnumbered!! Here's the link:

www.mumsnet.com/Talk/conception/a2317928-Toot-Toot-Calling-all-dirty-chicks-Jump-aboard-the-charabanc-with-Barry-The-Berries-Destination-BFP-thread-26

Hi Happylass, we appear to have a bit in common I am also restricted by school holidays (well college in my case) and I am 36 this year.
I have also just started looking at going abroad and yes the price difference is shocking. Also I was chatting in the staff room today and turns out a colleague knows another colleague who is currently "baking" her fourth successful IVF baby so I'll be having a chat with her this week and another has a friend who recently had treatment in Spain which has been successful and a hell of a lot cheaper.
Thanks a lot for the thread link, I'll check it out and I would be ever so grateful if you could let me know how you get with waiting times. x

Hi I'm also in South Wales, I was first referred by dr in August 2012 and we had our first consultation with ivf wales in march 2013 and I would have been able to start ivf July 2014. We went private but had iui which obv isn't suitable but we also went to crgw. Unfortunately it worked but I then miscarried so we delayed our ivf and I should be starting next month! With regards to going private I was told you could only have one go privately before it started affecting your nhs goes. Nice guidelines say you should be able to have 3 attempts so as ivf wales only give you two attempts they say that one private wont affect it if you have two private then you only get one nhs and if you have three private then no nhs. But I was told that over a year ago so things might have changed. I do believe they've changed the way they work and are speeding things up as they now have a clinic in Neath so hopefully the wait might not be as long as you've been told.

Hi Flowercot,

Thanks for the info re waiting times and about the Neath clinic, fingers crossed it speeds thing up. Sorry to hear about your miscarriage, I hope that your IVF is successful this time.
I'll have to defo get some confirmation on how going private might affect my NHS choices. Good luck next month x

I'm also in South Wales. IVF Wales at the Heath became Wales Fertility Institute at some point and is now run through Abertawe Bro Morgannwg trust (not Cardiff and vale). The waiting list was an absolute joke, I was initially referred Dec 2012 by Gynae, seen in IVF wales Aug 2013 and in Dec 2014 still no date for treatment. I eventually lost my rag with them and asked for the address to write a letter of complaint to. Within 5 days a letter for consultation had arrived. I started stimms in Feb and am currently on the 2WW.

Hope everyone gets their treatment - in the event that this isn't successful I would be interested in where you are going abroad for that treatment @lucieloos

good luck to everyone

Phe xx

Hi phephenson.. hope u had success with ur treatment. Im new on here and looking for some info on what to expect from treatment at the wales fertility clinic in the heath hosp? What was procedure ? I have had my 1st consultation with them and been back for bloods and a scan and finally 3 months later i have another appt next week which i have no idea twhat i should expect at this appt ? Any advice would be hugely appreciated :) oh yea i am 26yrs old hubby is 32yrs old and have been ttc for 8 years and are going to be having icsi xx