# Newbie awaiting IVF/ICSI at IVF Wales



## kat_11 (May 9, 2011)

Hi, myself and my DH have been together for 12 years. After TTC for many years, we went for fertility investigations and they found that I have PCOS and bilateral hydrosalpinx, needless to say I was absolutely gutted, took a while to come to terms with it all, but then my gynaecologist said he would refer us to IVF Wales, he raved on about how good the Consultant was that he was referring us to, so we felt quite positive about it all.

However, we first went to IVF Wales to see Dr. Amzo in August 2010. I had bloodtests done at that time and my DH submitted a sample in March 2011. 

After not hearing anything at all from them for months, I requested a follow up appointment as I felt we had been left in limbo as regarding well, everything.
We went back to see Dr. Amzo in April, who then told us that we had indeed been put on the waiting list for treatment back in August (we didn't know this). 
We were told that he was waiting on further information from our specialist, which had been requested back in August, but they still hadn't heard anything back. I was thinking, well surely this information that they had requested should have been followed up by this point seeing as it was now 8 months later and we were told also at this appointment, that without the additional information from our specialist, that treatment would not be started. Dr. Amzo said would send a second letter, marked urgent, requesting information from our specialist.

I waited 3weeks and then contacted my specialist direct and asked if he had received any such requests, either from our August appointment or the recent appointment in April. He had not received anything!
I then contacted IVF Wales, spending 4days trying to get hold of anyone and asked what was happening, as without the request, the information would not be received and treatment would not take place. They told me that the file had only just been brought down from wherever it was (this was over 4weeks after our appointment) and that the letters would be written and sent soon.

I contacted my specialist again and again he said that he had received no such request. He then offered a solution, that he would write some sort of cover letter, which he would send to us and Dr. Amzo, detailing some information and stating to directly request any further information from him. We received this letter within two weeks, this was great, just what we wanted.

We then received a letter to go for our validation appointment (in my opinion a complete waste of time). 
We were shown a powerpoint presentation, detailing things that happen and what could go wrong, pictures of equipment in the labs and what could go wrong there, different amount of days for drugs and times of drug changes (all too much information to take on, especially when they then turn around and say, but this is for a long cycle and this might not be for you).

We were then supposed to be seen individually to check our eligibility for NHS funding, to have blood tests and scans if needed and to talk to us in more detail about our personal situation. This DID NOT happen!

We were seen by a nurse, but we were quickly asked questions about a form, had our weights measured, were told we needed to have blood tests because the ones we did originally would run out before treatment (so why do them when you first attend). 

I asked if they had received the letter I know had been sent by my specialist and low and behold, it wasn't in our file!
Luckily I had photocopied the letter he had sent me and handed it over to add to our file. I said that it was ridiculas that this information had not been chased up, seeing as we had now been under the clinic for 10months and that treatment would not commence without it. The nurse assured me that she would speak to Dr. Amzo about it in the next couple of days, only time will tell, but I'm not holding much hope. 

I also found out that they still have not got a copy of my HSG scan results, this is kind of important also as Dr. Amzo seems unwilling to say either way, if I should have my tubes removed/tied before treatment as he doesn't know the degree of my hydrosalpinx as he hasn't seen the results of the scan.

We were then taken to the bloods room to have blood tests for HIV, Hep B + C and AMH/FSH for me, then that was it, we were handed a form to give to the desk to make an appointment for out treatment planning and were shown the door. No question time, no individual information, nothing!

Just seems everytime we go, nothing has been done and we come away knowing nothing more than I have found out on my own by scouring the net, my confidence in their competence is seriously fading, if I had another option for NHS funding in Wales, I would definately move.

Really sorry to rant on, not even sure if this was the right place to post this, just feeling quite down about this whole situation now, it's all looking a bit hopeless if they can't even seem to get hold of information or previous test results within 10 months, what hope do we have of treatment starting


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## kara76 (Dec 14, 2004)

Hiya

Sorry u feel you have been given the run around. The typical wait once on the nhs list is 18months for first ivf or icsi. Your specialist should of advised about your tubes.

You do have the option to move clinic to say neath if u so wish.

You might well need another operation to remove your tubes and it might be wise to check with ur specialist if he can do this 

I have campaigned long and hard for the second cycle of ivf on the nhs and feel its such a shame to read stories like this. Remember you do have the option of private treatment too.

I wwaited 25months for an intial appointment back in 2005 so things have improved a little with appointment times and the clinic is good once you are having treatment just a shame its so busy


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## kat_11 (May 9, 2011)

Thank you Kara for your reply 

I wasn't aware that there were any other NHS clinics in South Wales, will have to look into it and discus it with DH.

Well we have an appointment for our treatment planning, but not sure whether it will go ahead due to lack of information, but I have been in contact with my GP surgery to get a copy of all of my results of tests relating to fertility.

If IVF Wales can't get hold of the information, then I will bring the information to them!

I've just bought a load of different vitamins and supplements for me and DH to start, after reading the forum post by Angel,  we're starting Co-enzyme Q10 (both), L-arginine (both), Pregnacare original (me), Zinc (DH), Vitamin C (DH) and we've got brazil nuts and pure pineapple juice for extra selenium, anything helps I suppose.

Fingers crossed everything will go ok, I'm just not used to being so out of the loop, this lack of control is driving me nuts :|


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## Tuckeiller (Mar 26, 2011)

Kim

Sorry to hear you are having so much trouble.  We have also had a bit of a run around from the NHS in general in Wales.  Our initial referal resulted in me receiving an appointment for a pain clinic instead of IVF!  When I phoned to query the appointment I was told it was for IVF.  It was only at the appointment they confirmed there had beeen an error, and due to my age this delay now put outside the bracket for treatment.  Not happy, but did manage to get it resolved in the end, and am due to start treatment soon.  Sorry for the rant.

The purpose of the post is not to put oil on the fire, but to let you know things are changing at IVF Wales and this could be part of the reason for your dealys.

I had an appointment on Thursday and they advised that due to staff leaving they have had to reduce the number of treatments and are not booking anyone for July/August (apart from those already scheduled).  We should have been starting our treatment then.

Anyway, they said they are confident that new people will be in post shortly and things will return to normal from September.

I totally understand the frustraition.  What may only be a short period of time for them, seams an age for us.  I really hope you get some positive news soon xx


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## kat_11 (May 9, 2011)

Thank you Tuckeiller for your reply I really appreciate it, sorry to hear that you have also had trouble with IVF Wales, it would make it easier to accept if they just told us what was going on. 

Thanks for the heads up about the delays, nothing has been mentioned to us, so looks like we will be starting after September then, well fingers crossed anyways.

Fingers crossed everything goes well for you too, I'll prob start a diary if and when everything gets underway.

Also keeping an eye out for future meet ups, would be nice to meet up with other peeps who know what we're going through  x


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## Tuckeiller (Mar 26, 2011)

Kim

Keep on the phone.  The squeaking gate often gets a response.  My experience with the NHS in general is that you have to keep chasing things, and it is surprising the difference it can make.  I have lost count the amount of phone calls I have made!

Hope you get some news soon (phone them Monday), and maybe we can support each other.  Is this your first cycle?


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## kat_11 (May 9, 2011)

Thanks again, it's nice to know I've got someone out there to talk to.
Yeh I'll try to ring them Monday, see if they've chased up my notes or specialist yet.
This is my first cycle, first time for it all so I'm completely in the dark about what's going to happen, never been so poorly informed, I've not got a clue about anything that's going to or should happen.
I'll keep you updated though Tuckeiller, is this your first cycle too? x


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## Tuckeiller (Mar 26, 2011)

This is my second cycle, but the first in Wales.  In 2006 we lived in Devon and went to a different clinic.  One cycle was abandend due to a poor response and the other resulted in a grade A embryo transfer, but it did not implant    It was a difficult year, I lost my mum and we moved to Wales.  With so much going on we gave it a break for a bit.
  
My previous clinic didn’t really do any tests, other than sperm for the other half.  We always knew it would be poor, due to medication he takes for a condition he has.  They never looked at me, and since we have discovered I have severe endo (I have been complaining of pain for years).  Last month I had an op to cut out what they could, and drain fluid from the cysts/tubes.

We have had 3 appointments so far, and no presentation.  The next time I see them will be for a baseline scan in September, and treatment starts.  Scary, but exciting!  

I don’t have lots of experience, but am happy to answer any questions you have.  People here seem friendly (I am new too), and there is lots of advice and support on offer.


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