TTC for 10 months and the rest. Ten plussers welcome. Thread 2.

[lucieloos]

We have been so busy chatting I've started a new thread. Welcome all 10+ ladies. Hope we all have some luck on this thread.

We are unexplained, Lucie.

Everything crossed for you sali that sounds great! How long have you been trying?

I'll be testing a couple of days after you on 22nd. That's if period doesn't arrive - I've never taken a pregnancy test in 12 months of trying as my cycles are like clockwork.

Unexplained must be really annoying - I don't have a cause yet so I may be the same.

We've been trying for 16 months now. We've gone private as the wait for an initial NHS consultation is 18 months in our health board.

Omg 18 months for an initial consultation?! We got referred in October and I have my scan on Tuesday, but I was kind of hoping the scan would be shortly after that. Hope it's not months and months!

How old are you sali? It will be less than that now if you are 36+

I'm 34. So close, yet so far!

Sail that's an insane wait! From going to the GP to now, my lap and dye (which is my final diagnostic before ivf) it's taken 18 weeks. Then there's another 18 weeks max from that to ivf so I reckon my nhs round will start around April.

They are clearing the backlog now sali so whilst it might not be quite as quick as if you were 36 hopefully it won't be quite as long as 18 months. I waited 9 months from being referred to our first appt. Hopefully you won't need it anyway with your IUI.

Oh Sali I think I misunderstood, is that the time from 'trying' until they decide to start fertility investigations?

In which case, I think 12-18 months is quite normal unfortunately :(

No, I wish it was, Itsme! You have to be trying for at least a year before a GP will even contemplate referring you. Then from referral to a first appointment, it is 18 months (or hopefully a bit less).

Sali - where are you to have such a wait?? Xx

Wales.

Well, the 12 months is understood as it can take a while to fall pregnant, even if nothing is wrong at all, but that referral time is just absurd!

When you do get going, and if it does come down to IVF, I've heard some areas in Wales are quite generous with three paid IVF rounds?

Sorry just read back your previous post.. Fingers crossed you test positive on the 20th and you start the last leg of your journey to parenthood!!

I am also in Wales and have waited 9 months so far from referral to my first appt. I am only being seen this quickly as they have made the decision to see people 36+ ASAP. We get 2 full rounds plus any frosties put back.

That wait is long, but the amount of tries you get is fab! So Lucie if you ended up with 4 frosties after 2 fresh rounds (fx you won't need the frosties), you can have 4 frozen FETs? That's brilliant.

I'm in South East England and get 1 fresh and two frozen goes on the bus, but the wait from 2 years ttc to appointment has only been 3 months.
From 1 year trying I got all my tests within a year, but that was because everything was fine and they kept sending us away to try naturally. Xx

I agree, it's a ridiculously long wait. It may well be that you end up being seen sooner though, there must be some cancellations. From phoning the hospital to having our initial NHS hospital tests was really quick then a two month wait for our consultation.

Sammy, great that your clinic are looking into implantation. Usually they don't do that until 3 failed transfers. Our clinic's advice was to try another FET but I just couldn't go ahead, in hindsight it was the right decision!

I am making slow progress with the book, I was never good with science! Apparently with IVF on average only 50% of embryo's are viable and when there are immune issues preventing implantation it is harder to resolve than with recurrent loss. I am slightly concerned that intralipids may not be enough but will see what our clinic and the hospital say. May also get some more blood tests done to rule out other immune issues. I think a lot of people who are unexplained have immune issues, it's just not routine to test for them yet.

Yes I think so Sammy. The only problem for me is I don't make enough for frosties unfortunately so don't think I will be making much use of the frozen cycles.

Glad you are getting through the book trixe. It's mad isn't it that even in your 20s approx 30% of embryos still won't be viable and over 40 it's 85%! I think you're definitely doing the right thing getting all the tests done. I think the intralipids and prednisone resolve the majority of issues. The rest could be down to non viable embryos.

Trixie - I do worry about immune issues, it niggles at the back of my mind that we're going to use all our envies and only find out afterwards that there is a problem. Why isn't it routine to test I wonder? Xx

Sammy you can normally get all the level 1 immune blood tests done by your go. It's the level 2 bloods and nk cells that you would need done privately which are unfortunately pretty pricey but if you are worried why don't you start off with the level 1 and see how they go.

Wow, the wait for various things is so different across the country. I'm in London (Southwark) and my gp was happy to start investigations at 8 months (I turned 35 at that point so maybe that's why) and referred at about 10 months. It's now 12 months and still a way off from a consultation. No idea about what the ivf wait list is.

Sali, how far did you go on the nhs before going private? Did you get all your investigations done?

I just got back from MY scan which was meant to be the last step before booking an appointment with the consultant. Unfortunately they found "something quite large" on or attached to my womb so have referred me for an advanced scan. That will happen early Jan so a Dr can decide whether it needs removing prior to treatment. The nurse thought it was a fibroid but I think she also saw another smaller fibroid.

Hmm. I guess this looks like a possible cause, which is what I wanted,but the wait is killing me. It looks like another 2 months before we even see a consultant and then who knows how long I'll have to wait for the surgery. The small fibroid came up on a scan I had 5 years ago and the nurse seemed a bit surprised they didn't remove it then. Now I'm mad at myself for not insisting on it earlier.

Anyone here got a similar issue?

Well you never know I guess Lucie, even if you got one extra is good to know you would be able to use it!

Oh really Trixie, that's good to know. What tests do they do as level one?

Star - that's great news that you have s possible reason. Any way you could pay privately for the consultation? Xx

Yes would be lovely if I could even get the one but not really pinning my hopes on that. Just glad to have a couple of free attempts:

Here is a link to the level 1 tests. There's quite a few of them but most gps will do them if you ask just to rule them out of any fertility problems. You could tell them about your transfer and say you've been recommended to have some more blood tests.

www.zitawest.com/ivf/immune-testing/

Sammy, the thing that has always bothered me (other than not getting pregnant despite all our test results coming back fine) is that since starting ttc most months I get cramping around 7-10 days before AF. After my first IVF it was very bad. After my FET (where I got an early positive hpt but blood test showec v v low hcg) cramping was mild.... I thought maybe I was just paying more attention to my body but how could I not notice bad cramping before. My GP and the clinic said its nothing to worry about and dismissed it and I thought maybe it was just my body getting ready for AF. I think lots of women probably get cramping before AF and its nothing to worry about but for me it made me think there could be an issue and turns out there is.
My GP was able to do all blood tests recommended by my clinic bar one and the NK cell one. I would definitely recommend getting it done if you can just in case.
I'm not sure what the level 1/2 tests are. I had three blood tests earlier in the year due to my Raynards - due to blood clotting. And three more for implantation issues.

Lucie, I agree re % off embryo's. Out of my 7 I guess 3-4 (max) would have been viable, I've just got to hope there's at least 1 left. Even with the immune treatment there are no guarantees I guess. It's just at the fertility show and on the thread on here they talk about other treatments but like you say, intralipids and pred should do it! Don't rule out having something to freeze btw.

Star, we are neighbours! I am in Forest Hill and work in Camberwell. Are you at Kings College Hospital? (don't feel you have to answer if you'd rather not) I have no knowledge of fibroids but if it is easily remedied and that is the reason for you then that is good! I think my clinic do one of scans for not too much, can pm you if you like.

What other treatments do they suggest trixie? I've heard of humira but that's made from human antibodies or something and I know a lot of doctors won't touch it. I've done a lot of research into immunes and a many of the ladies in my group use them for severe immunes but the majority stick with pred and intralipids and have done well. I think they are the main things used unless all else fails. A lot of doctors especially in the uk don't actually believe in the whole immune stuff. They believe it's either a non viable embryo or lining problem etc but I think they are definitely worth a try. I think especially for you as you already have a known auto immune issue with the raynauds.