NHS wait for IVF

[cryst4l]

morning all, I have my first ivf refferal with the fertility dr at the nhs hospital via my gp (north- west london) on 21st August and was wondering what happens in this initial consultation and the next steps and how long I would be roughly looking at to eventually get a round completed on the nhs? I am debating whether to start the ball rolling privately as I have other medical conditions that affect me and only becoming pregnant will help ease my pain quickly ( I have severe bowel endo and adenomyosis)

Do I hang around waiting for ivf on the nhs but continue to have severe pains I get each month for around 3 weeks or do I go straight for a private clinic to hurry the process ?

Any advice would be appreciated. x

[Bibble-2016]

How old are you? Xx

[Bibble-2016]

Sorry saw your other posts about being 37. I had unexplained infertility and was given a very casual attitude by fertility consultant based on basic tests so we took our time and although we're self funding at a local NHS clinic it has taken a long time. Waits for everything 3 months between appointments. The upshot is we just had failed icsi and I think I might have a low ovarian reserve now that either a) wasn't picked up in basic tests. Or b) I am now another year down the line. I don't think I truly appreciated the decline in ovaries , think I was given false security by fertility doc. Why don't you go for consultation anyway and check out their wait times, but may be worth getting a consultation at a private clinic too. Good luck it's hard isn't it xx

[cryst4l in reply to Bibble-2016]

Thank you for your response. I feel I am in such a difficult position here as I dont think my body can go through this unbearable pain each month, hence want to hurry the process and go dwn the ivf route quickly. I think I may try and call a few clinics to ask about their services etc - its an awful wait on the nhs.

how old are you if you dont mind me asking? are you on your 2nd cycle? i wish i had my eggs frozen years ago x

[Bibble-2016 in reply to cryst4l]

I'm 37 as well and I also wish I'd frozen my eggs. Didn't meet the right man early enough. Life.

We're looking at going to a new private clinic to get another round in sooner. It would be spring next year if I wait in the NHS clinic. Some private clinics do free open evenings and mini consultations. I would definitely get moving sooner rather than later. Wish I had been more proactive when we first started trying and done more research. I think you just trust a dr when he says "oh you'll probably get pregnant in the next few months" and hear I am a year down the line failed icsi and possible egg issues. Great 🙁 . Really really wish you luck. This forum is brill for support and advice xxx

[Lizzielizzielizzie in reply to Bibble-2016]

Apparently if you look into the figures about egg freezing there have actually been very few babies born from this so maybe we should all stop thinking that would have solved our problems. We are all so good at finding things to beat ourselves up about! Life turns out how it turns out!

Crystal, have you had laparoscopies etc? (Sorry haven't read previous posts)

[Leesalou]

The first consultation is normally 2-4 weeks once they have received your referral, at the consultation they have a chat over your history go through any notes then go through the treatment plan.

Every clinic is different but after my consultation I had to wait up to 4 weeks for the nurse to call to confirm to tell me to take the pill on the 2 day of my period. Then stop basically a month after, then when I had a. Adeline scan and started so after consultation it does move forward very quickly,

The only thing If you go private you will more than likely lose a round on your NHS cycle funding as I did,

You could always ring your chosen clinic 2 weeks after to make sure they have your referral.

Wishing you lots of luck for when you start,

X

[Mariec7]

Morning cryst4l, that's good news that you have the NHS referral. Not everyone has the opportunity to get funding as it is a post code lottery so I wouldn't jump to private just yet. I am not sure how long you will wait but once the process starts they usual crack on with it. In your first appointment normally a nurse will check your BMI and you do a breath test for smoking. You blow into a CO2 device. You are asked questions around your health. You should see a consultant as well as a fertility nurse. Once they check everything they either approve you for funding or not. Every area in the UK is different in terms of what you will be offered on the NHS. Normally funding might be for 1 fresh cycle, 1 frozen cycle and if you have any frozen embryos they might pay for you to keep them frozen for 1 year then after you have to pay to keep your frozen embryos. You call them on the first day of your period and they might post out the drugs to you or you collect them and you start your injections. Frozen embryos can usually be transferred to other clinics if you choose to go somewhere else.

Very often IVF staff do not like to talk about gynae issues because there just isn't enough hard evidence out there that endo, adenomyosis etc will affect IVF results. I feel bad writing this but I wish I knew this before I did my first IVF cycle, the drugs that you are given during the IVF process do aggravate endo and adenomyosis. Consultants won't really talk about this because there is no evidence, gynaecologists might mention it. Weighing everything up we all want a baby so and we need the IVF drugs and that's probably how they look at it in an IVF clinic. The NHS follow NICE guidelines so everything is evidence based. So until there is hard proof that the the drugs aggravate adenomyosis they won't mention it.

When I had the first round of IVF, I had the egg collection and then I had a fresh cycle soon after. My body was just tired and everything was flaring up. The nurse said to me at the time "don't worry your endo will disappear once you fall pregnant". She meant well but it shows how little some of the staff know about endo and adenomyosis. I was led to believe that I would be fine. In hindsight I wish I got better advise on this. If I have IVF again, depending on how I feel I might give myself a break after egg collection and have a frozen embryo transfer after a month just to let the inflammation go down. You could ask your consultant what they think, your consultant might give you better advise than mine did on this.

If you are experiencing pains, between now and your IVF appointment I would just start taking vitamins consistently everyday key ones for fertility and endo/adenomyosis are Folate/Folic acid, Omega 3, D3, Vit C, Vit E and B vitamins. I would taken them individually with food morning and night rather than 1 multivitamin tablet. My pains have improved significantly since I started this. I am not sure if you already do this but cut out gluten and sugar these aggravate adenomyosis especially bowl cramping. I wish I could shout it from the roof top about vitamins but it's key for severe gynae problems and also preparing the body before IVF. I am preparing my myself for a Frozen embryo transfer which I am doing privately. I am basically being kind to myself and trying to keep my stress levels down which I think is probably the most important thing but very difficult if you experience pain.

It is a miraculously process and so I hope it all goes well for you. Will be thinking of you and if you get any advise from your appointment on the 21st please share because this journey is also a learning process.

Big hugs xx

[hannahi]

Hi, everywhere's quite different I think in terms of waiting times but I'm finding there's a lot of waiting with the NHS - had first appt in March & expecting to start treatment towards the end of the year. The only thing I would say though is that as far as I'm aware if you have private treatment I don't think you can then have nhs treatment...something to bear in mind if you end up having more cycles of treatment....as we can only really afford one round of private treatment we're holding out for nhs treatment...but the waiting can be frustrating, and I'm not in pain.

All the best with whatever you decide xx

[Lizzielizzielizzie]

Round us (Northamptonshire) you can choose which private clinic you want to take your NHS treatment at and it's really quick, no slower than going private. I suggest you ring your NHS provider and ask what their waiting list/times are like before you decide to pay out privately as you might find it's not too bad. Also be aware that paying for a private round might preclude you from taking an NHS one later, depending on your ccg's criteria.