# IVF on NHS - Feedback & advice needed please!



## Witchie Poo Cat (Aug 12, 2005)

Hi Girls

I normally post on the Clomid board but I have a referral appointment to see the IVF co-ordinator at my local hospital next week and just dont have a clue what I should be asking and wondered if you girls could give me some pointers.  Here is a quick rundown of where Im up to so far:

Been TTC for just short of 7 years.  Went to see GP about 3 or 4 years ago and was told that probably my weight was causing me not to ovulate (i was keeping temp charts) and to lose some weight that might help.  18 months or so later (December 2003) went back to GP and said I did lose 50lbs but due to family tragedy gained it all back so lets get things moving now else I might never lose the weight and never get PG  .

Referred to Gynae at local hospital (Bolton) and was booked in for Lap & Dye for May 04 and added to IUI Waiting List.  Lap & Dye all "beautiful" consultant said, no PCOS, no Endo and no blocked tubes or scarring etc.  Started 6 months of clomid in June 04.  June & July on 50mg but didnt O so up to 100mg for 4 months.  Know I O'd at least once but all BFN.

Was off Clomid for 6 months and lost 50 lbs, still no O.  Started back on Clomid in June 05, 3 months on 50mg (yes, even though it didnt work last time and also didnt work this time) - on cycle 4 took matters into my own hands and upped the dose to 100mg as my gynae was always on holiday whent he results came in delaying in increase in dosage.  Have gained back 40 lbs since restarting Clomid    Went to see GP who agreed and now she is doing day 21s every month - This is my 2nd month on 100mg again, day 21 was yesterday so fingers crossed I O'd.  Found out last month from my GP, she was checking where I was on IUI waiting list and turned out there is NO IUI waiting list in my area and I wasnt added to any list.  Was really upset and angry at this news, all that time I could have been on IVF waiting list instead now I have to start again  .

Gynae wanted me on 12 months of Clomid this time around but after speaking with my GP we agreed this wasnt good since I have already been on 6 months and due to increase in cancer risk, if it hadnt worked after 6 more months on 100mg this time round then it probably wasnt going to.  It was at this point I complained to my gynae about all the delays and how I was feeling abandoned with no monitoring and no support. I asked that perhaps and infertility specialist woudl be more appropriate and, voila, an appointment arrives in the post to see the infertility specialist aka IVF Co-ordinator  .

So, as you can see I have been mucked around a lot.  I was 35 last week and am desperate to not have any more delays if I can help it.  As far as I know there is no weight criteria for IVF in my area (my GP looked into it but Im still not convinced) but I do fit all the other criteria for treatment.  I dont know how long the waiting list is for treatment at Beaumont hospital on NHS but have been told its probably around 3 years.  I also read some posts on this board that says any private treatment you have is deducted from your NHS entitlement - not that I can afford private treatment but I was thinking about egg sharing (at Care Manchester I believe you can egg share up to age 36) but Im worried they wont take me due to my weight.

Any ideas what sorts of things I should be asking at my appointment?  Obviously no 1 question is how long is the waiting list and no 2 is do I fit the criteria but Im sure there are lots of other things I should be asking too.  I was thinking of asking for an FSH test as Ive never had this done.  I still have 4 more cycles of Clomid left so I might not need the IVF but would rather go along to this appointment assuming that I need it and ask all the right questions.

 and any advice would be very much appreciated.  

Thanks for your help.

Hugs

Witchie Poo Cat


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## marzy (Apr 28, 2004)

hi firstly get criterea list from local p c t...
get referal from gp to ivf clinc then ring ivf clinic to find out once been referred how long is waiting list??
hope this helps..
get gp to do day 1 2 3 and day 21 pogesterone tests to get ball moving..
if gp does them you wont have to pay

all pct have different criterea...
im if you wish
marzy
xx


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## Witchie Poo Cat (Aug 12, 2005)

Hi Marzy 

Thanks for your reply.

Ive had the day 21s done which show I dont O unmedicated which is why im currently on Clomid.  Havent had days 1, 2 and 3 done, what do those check for?

I do fit the criteria for my PCT and the waiting list is 3 years and you get struck off if you turn 40 while on the list.

Any other tips or advice from others would be much appreciated.  Got the appointment on Wednesday morning and jsut want to ensure I ask all the right questions when Im there.

Thanks

Witchie Poo Cat


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## Ellie.st (Mar 11, 2005)

Hi Witchie poo!
Here are some of the questions I think I would ask, having gone through two cycles of IVF:  

1. will they will test your FSH prior to starting tx (if not, ask them how they will know what level of drug to put you on)
2. what arrangements do they have for monitoring you during stimming (to see if the dose needs adjusted up or down, including picking up on any signs of OHSS)
3. how do they handle cases of OHSS (very few people actually get this, but I wanted to know that I wouldn't be relying on my local casualty unit to deal with it without any input from the IVF clinic)
3. are they open at weekends (so that you can have scans, EC and ET when you need them and not just according to when the clinic is open)
4.  what out-of-hours cover  do they have (eg is there a mobile number you can use to contact a member of staff) if you need any help/advice outwith clinic hours.  When you are worried about something during a cycle (which most of seem to be at some stage or other!), it makes all the difference to know that there is someone you can contact for help.
5.  would they do your EC under sedation or under GA.  (This was important to me, as I didn't want to have a GA, but, there again, other people prefer a GA to sedation)
6.what happens at the end of the 2ww?  Do they do a test for you, and what is the follow-up (both for a BFP and a BFN).

I would also ask them to run through the protocol you would be following so that you know how they do things (every clinic seems to be different) and how often you are going to need to be at the clinic during treatment (especially for scans/blood tests during stimming). Forewarned on this is forearmed, especially if, like me, you have a long way to travel to the clinic!

I would also do some reading up so that when you are having your treatment you understand the various stages of the IVF process and can ask them questions (and understand the answers!). 

Might be worth asking also what happens if your cycle has to be abandoned (eg due to poor response) and how long you would have to wait for another go if this happened.  Similarly, do you go back to the end of the NHS queue if your first cycle is unsuccessful, or do you  get to have another turn quite quickly?  (Sorry, not meaning to sound negative by mentioning the last two points, but if you are considering eggshare at a private clinic the answers you get from the NHS clinic on these points might help make up your mind).  I am so ancient that NHS funding wasn't an option for me so don't have direct experience of the complexities of NHS funding but I think the answers to these can vary from area to area.  I would also ask them to clarify whether if you have private tx it reduces your entitlement to NHS funded tx.

Can't reallly help with any specific egg share questions as I haven't been through that myself.  However, it might be worth asking about the basis upon which they divide up the eggs between you and the other recipient.  

One other tip I would suggest (based on experience) is to write down your questions and take your list with you to the appointment.  My mind goes to mush when confronted by a doctor and I find a list really helpful.  It might also be worth writing down the answers you get. I find it amazing how much I forget otherwise of what has been said by doctors, especially given that, in normal circumstances, I have a fairly good memory...

Good luck with your appointment and with your treatment!

Best wishes

Ellie


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## Witchie Poo Cat (Aug 12, 2005)

Thanks for your replies.  Had my appointment yesterday and am now on the waiting list - just need to get the weight down before my name comes to the top!

Hugs

Witchie Poo Cat


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