Fertility/IVF referrel newbie....advice needed!

[CJP350]

Hi ladies

My DH has been diagnosed with abnormal sperm (1% normal) and having been TTC for over 12 months we're being referred for treatment. Our doc's talking about ICSI and IVF and it sounds like this type of treatment could be our only option.

I'm pretty terrified by it all having spent most of the weekend reading up on everything. I wonder if you could answer some questions:

• how long does it take from referral to starting IVF for the NHS cycle?
  
• how much time off work did you need?
  
• did you tell your work why you were off?
  
• is it all as traumatic as it sounds?
  
• which private clinics do you recommend (counting on needing three goes)?
  
• how much does it cost privately?
  

Answers to some or all of my Qs would be be much appreciated. Also, anything else that might help me too.

Thank you very much in advance for help.

[lozster]

Hi there

• how long does it take from referral to starting IVF for the NHS cycle?
  

Depends on your pct and your hospital and your circumstances. I waited a year i think and that was accelerated because of age. Some pcts don't pay for any cycles - some will pay for several. I got 2 plus a frozen cycle (counted as part if a full cycle) plus I had one private cycle in between. You can combine private and nhs treatment and also pay for private drugs on an nhs cycle

• how much time off work did you need?
  

You will need several scans and a couple of appointments to explain the process and teach you how to inject. For egg collection you will need minimum one day off. There is then a period of two to five days where the embryologist determines when the embryos should be put back. For embryo transfer some women just go to the appointment then go back to work - I have had difficult transfers so needed at least a day. You then have a two week wait before you can pregnancy test. Some women take all this time off. It's not strictly necessary - just a personal choice. I took less and less time off with each go.

• did you tell your work why you were off?
  

I told one line manager and it turned out her child was ivf so she was helpful. When she was replaced I didn't tell the next one.

• is it all as traumatic as it sounds?
  

No. It's a very straightforward mechanical process. The injecting was easy and i think most people agree with this. I attended the largest clinic in Europe as a satellite patient and it is like a conveyor belt but not in a bad way! The hardest thing is the emotional side. It's exciting as it feels like a chance but I was so scared at each stage of disappointment. We managed our expectations by having a long term plan of how many cycles we would do, then what we would do in the event they all failed (donor egg/adoption). It sounds like you have already been through a similar thought process.

• which private clinics do you recommend (counting on needing three goes)?
  

I followed my nhs consultant when he opened a private clinic as it was close by. You do need to visit fairly frequently so I didn't want a mammoth journey. I know other women though who have literally relocated to London for the period of treatment to be at a top clinic. I honestly think though that much of ivf is down to chance not quality of care unless you have a very specific condition requiring additional treatment.

• how much does it cost privately?
  

With drugs I paid 5k. As an oldie I needed a high dose so this cost more but I did shop around and get the consultant to write separate prescriptions so I could go to the cheapest supplier for each item. He wasn't best pleased but he did do it so a saved maybe a few hundred pounds in this way. I also chose self injection rather than auto as this was cheaper and, despite the mixing, I found it easier. During stimming it took me about half an hour to prep them all!

Good luck to you! My 4th round blastocyst is currently kicking my tummy . At 26 weeks I'm still a worrier and have progessed from fretting here to fretting on antenatal tests to fretting on the pregnancy board. Not doubt in thirteen years I'll be sharing angst on the teenagers board! Hope to see you there. All the very best.

[CJP350]

Dear Lozster,

Thank you so so much for your very detailed and kind reply. Huge congratulations to you for succeeding in your treatment. What an amazing thing that it's all worked out.

It seems like the emotional roller coaster will be the hardest part. I need to get my head around the whole thing and prepare myself for it.

I've always taken it for granted that I'd be able to have a baby as soon as I wanted, I realise now how very naive I was!

I wish you all the best with your pregnancy and thank you again.

[EeyoreIsh]

Hi cjp

the speed depends on your pct.

At first it was really slow, 7/8 months from gp referral to meeting with consultant.

Then we moved

we went through it all quite speedily. I saw gp in September, consultant agreed to refer is for ivf at our first appointment (after tests) in late Jan. We're about to start ivf in a month. Would have been earlier but I fell pregnant naturally but lost it early. so this pct has been super speedy!

I haven't started ivf yet so can't tell you the reality... ask me in two months

my friend had ivf, cost her £8k for one cycle (long protocol). But she got pregnant first time. Most expensive bit was the drugs.

I'll be getting it on the nhs. But even so, things add up. £80 for AMH test, £400 for freezing sperm, costs of travel to clinic, ££ for acupuncture and vitamins!

hope that helps. Good luck.

[EeyoreIsh]

I meant to add, no need to be terrified It's an emotionally draining process. But I've found that it has its own rhythm, and you'll find most of life carries on around the treatment. surprisingly, I find it easier to cope with now than I did in early years of ttc. It still floors me some days, but it does get easier.

One thing that has really helped me and dh is keeping busy. We love going out for meals, meeting up with friends, etc. my friend found it really useful to take last minute holidays. anything to restore a sense of normality helps.

[lozster]

OP - 5k in my case was for non-icsi cycle. Icsi will be more. At the clinic I went to (which actually shares a price list with numerous clinics in the north-west) long or short cycle is about 5k. Icsi is more plus you may need extras such as embryo freezing. I checked out another chain of clinics in my region and their prices were all bar identical so 8k sounds a bit steep to me unless the cycle was icsi plus extras or at a top London clinic.

You sound like you have sensible expectations of the process and I think this will hold you in good stead.

[EeyoreIsh]

Yeah, my friend's was in London and they had extras, including blastocyst freezing. She was also on a long protocol and lots of drugs after implantable too.

I wouldn't be able to afford anything like that!

[CJP350]

Hi both, thanks for your time to write to me about this, it's really appreciated. I don't feel able to talk to my friends about this and am missing having them as a sounding board. If nothing else, this is so personal and based on experience that they may not be able to help anyway. First consultant appointment is on 5th June, will let you know how it goes. All the best and good luck to you both!

[CJP350]

PS: Eeyoreish: I hope you have success fist go!

[EeyoreIsh]

Good luck for 5 June. much though I love mumsnet, I actually find the fertility friends better for infertility support. More people going through the same thing.

less gin there though!

[EuroShaggleton]

Hi,

I'll try to answer your questions. I'd also say there is loads and loads of knowledge on here (have a look at Conception as well as Infertility - I am a regular on the former as I refuse to label myself as "infertile" while I am still trying) and on Fertility Friends.

• how long does it take from referral to starting IVF for the NHS cycle?
  

For me, I was referred by my GP to a fertility clinic in June, had various tests there and was referred on to an IVF clinic in November, completed paperwork in December, had a scan in Jan, and Mr euro and I had the HIV & hep blood tests in Feb. We could have started in March (but I deferred as I was freaking out). I first saw my GP in April/May for initial tests, so it was just under a year from that first appointment.

• how much time off work did you need?
  

I took the day of egg collection off. For everything else, including ET, I just popped out for the appointment

• did you tell your work why you were off?
  

No. I took EC day as medical leave, telling work I was having a medical procedure under sedation and would not be available that day.

• is it all as traumatic as it sounds?
  

It's easier when you are in the middle of it. I reacted badly to the downregging drugs but most people are ok on them. I decided to go for natural IVF as a result of that, and found it pretty easy. I freaked out a bit at EC but I never react well to being knocked out - it's a control thing, I think. ET was just like a long smear test.

• which private clinics do you recommend (counting on needing three goes)?
  

You need to find one that is right for you. Some people swear by the ARGC (and the success rates are undoubtedly high) but I would crack under all the drugs and daily testing. It would just be too invasive and stressful for me. As I am doing natural, I went to Create, who are known for that.

• how much does it cost privately?
  

It varies enormously. Some clinics are very expensive (10k+ for a cycle). Some less so. The cheapest option is often privately funding a cycle at an NHS clinic. I think it was 3.5k at mine (King's). At Create, a natural cycle is about £3k in total.

BTW, I stopped my first conventional cycle because I was having a bad time on the downregging drugs. I got a BFP on my first natural cycle. I mc'd but I am starting again very soon.

[EeyoreIsh]

I'd be really interested to hear more about how you found the natural cycle euro. I've got two goes courtesy of the nhs, luckily without any down regging. But if that fails, I'd feel more comfortable with a natural cycle.

I have to admit I find keeping the right attitude the most difficult bit so far! But my DH is very good at keeping me level.

[CJP350]

Hi Euroshaggleton and MorphandChas, thank you both for your reassurance, tips and advice. I plan to try everything I possibly can to have a baby, life without being a Mum isn't really an option. I didn't know you could get private treatment with the NHS so I'll take a look at that. And I'm about to look at Fertility Friends too...see you on there!
Thanks again, this has been so reassuring.

[callofthewild]

Hi,

I thought I would also try and answer your questions. My situation is slightly different in that as my DH already has a child from a previous relationship we were not entitled to any NHS cycles where we live and had to go privately from the beginning.

We (I) decided to go for treatment at the ARGC on the basis that whilst it is very expensive, we would rather have one successful expensive cycle than several cheaper cycles that may have ended up costing the same overall. It is a balance not only of the financial aspect but the emotional aspect of having to undergo repeated cycles if unsuccessful. To put this in better context ARGC have a live birth rate of around 63% for women under 35 compared to a national average of 33% so we knew we hopefully had a reasonable chance of success.

Time off work - I got my GP to sign me off for 3 weeks. Whilst the first week of stimming only required a blood test each morning and a scan every other day, the second week often required you to have repeat bloods and repeat scans. Note this approach is very particular to ARGC and very few clinics run as many blood tests and scans. On the flip side this meant your medication was tweaked daily to suit you and is supposed to ensure a good number of good quality eggs (having not had treatment elsewhere it is difficult to say whether for me personally this full on approach made any difference as I have nothing to compare against). I was pretty uncomfortable after EC and also wanted to have time at home to rest after the transfer.

Telling work - my GP note said gynaecological investigation treatment and investigation and I did not elaborate any further.

Is it traumatic - It's certainly very full on and takes over your life for a period of time, however, because I wanted the end result so much I found that made it easier to deal with.

Private clinic recs - I would have no hesitation in recommending ARGC. Personally I did not find it too intensive or stressful but equally I had nothing to compare it with. Have a look on the HFEA website as it will give you all the various stats for different clinics along with HFEA inspection reports.

Costs - Treatment and drugs at ARGC are no more expensive than elsewhere in London in fact in some instances are cheaper, however, it is all the blood tests, scans, immunes treatment that pushes up the overall cost. You can imagine how two blood tests a day at between £90 and £120 each can cause the costs to rocket. Up to my BFP it cost around £10.5k and since then we have probably spent around £5.5k with possibly another £1.5k still to go. However, I am now pregnant with twins and we don't regret a penny that we have spent.

I hope that this is useful and would also second having a look at the Fertility Friends website.