Assisted Conception (and all the bits in between) volume 7

[Italiangreyhound]

Hi ladies Pumplinjoy, Shirley, Lissy, Keziah, Womanly,Val, Late, monkeybumsmum, tametortie and Rowing* - hugs to you all.

woowa of course you can join us.

Choco and Horton and londonlottie do you still look in on us?

Can you all find us?

Hello everyone, can I join your group?

I am ca.50 days away from a long protocol with ARGC and counting the days...I have unexplained infertility although I have high nk cells and borderline cytokines which will need to be treated during tx (need to probably do an IVIG drip which is all v expensive -- arggh). We have been trying for 2 yrs and have been through IUIs, timed intercourse with clomid etc with no result but this would be the first (and hopefully last) ivf. Unfortunately I cant start it next cycle as I am still waiting for the results of our chromosomal/karyotype testing. Has anyone done that?

frustratedchick you're very welcome. We had chromosome karyotyping done. Took five weeks to get the results.

AFM, so the world has moved a bit. The HCG result is 36, and the nurse did all in her power NOT to berate me for the fact that actually, I shouldn't have tested until tomorrow. Turns out I can't count. They consider 25 to be a positive result, so it looks like you're right and a line is a line. They don't think it's necessary but have agreed to me having another test on Monday when I'm back from my trip. I do have a mid Sept appt booked with dr ndukwe booked as a back up on sept 16......as I'm sure we've all experienced, I'm pleased but this, for someone with my history, is just one small step forward.

Thanks all for you support today. If I knew you in RL, I'd buy you a drink, flowers, chocolate etc.....

at beginnings - CB digitals for you then!!! Hope your next HcG raises... knowing it raises helps decrease stress (and seeing CB digital go from 1-2, 2-3 to 3+ (after 5 weeks no use as doesn't go any higher!) Totally understand about one small step, I warn you now the next few weeks are just the same (small steps, waiting etc). We treated ourselves to a private scan at 6 weeks which really helped reassure me ... enjoy weekend away! at news and testing early xx

Frustratedchick - hi, yes we did karyotype tests etc. All was ok, but worth checking. For us it was raised NK cells and TH1 level raised that was the issue, plus thyroid level as my consultant says it needs to be below 2 to conceive and avoid miscarriage, so had to start thyroid medication before could do a cycle.

kezia thanks. Did you find out about all this through the karyotype test?
include the thyroid level? wow. The immune test I did recently showed that I have v high nk cells which may prevent implantation in the first place (apparently and it may be true as I have never been pregnant) ...I have read its all quite controversial but happy to go along with it if it helps. I am glad that argc are being so thorough with all their testing, but I suppose it delays things quite a lot! what protocol did you do?

Hi frustrated, I had my first appt at argc on the 20 July. Finished my monitoring cycle which was all fine (apart from highish fsh). Nk cells came back a bit high which will be treated during IVF cycle, but cytokines also borderline high so i'm about to start taking humira which can delay things by between 6 to 12 weeks. I'm finding it truly agonising to wait even more after the 12 week wait for appt, but am feeling reassured by thoroughness. When I do start I'll be on short protocol.
beginnings thinking of you, so hope it's good news

Hey lucy My first argc appointment was just a few days before yours. My cytokines were 30.8 or something - but they said I shouldnt take humira - they suggested either Ivig or other treatments that I can do at the same time as my LP. They will also need to retest for those hormones once I start. Hope humira is not so bad.

By the sounds of it we will start at the same time. I have to say, I cant wait.

beginnings really hope that your HCG raises - crossing fingers

Frustratedchick - we were not at ARGC but at a clinic nearer to us, and our consultant there recommended the level 1 and level 2 immune tests. Thyroid is part of level 1. Thankfully our karytpye was all ok. My issues were:

• thyroid above 2, so on levothyroxine (and all way through pregnancy)
• am coeliac, so need higher dose folic acid - 5mg
• high NK cells - cd19+5 and one other number
• TH1 cytkonie too high (8 above top number I think)
• thrombophilia problems
• heterozygous for Factor V Leiden and PAI-P

Our consultant is more conservative with treatment, so no IVIG for me thankfully but intralipids instead for NK cells and TH1 and also steroids until week 12. Then clexane for thrombophila problems (till after birth) and aspirin (this was until bfp only). Our problem has always been implantation we learnt. I started the aspirin ready for next ivf cycle and amazingly after 7yrs ttc got a natural bfp just before saw consultant again. He then put me on intralipids asap and the rest as above. I did a Long Protocol on our failed ICSI cycle earlier this year.

Have heard great things about ARGC though - they are very thorough as am sure Lissy would tell you!

Lucy - so sorry you have to wait an extra while, hope humira goes ok.

keziah I confess I did feel like a bit of a numpty when I got off the phone. Might need to dig out some of my cbt tools.....don't think today's anxiety levels were good and I did have what I used to describe as a wobble....haven't had one for a while.

Lucy and frustratedchick thanks. Me too! The nurse I spoke to today was very patient with me. They do a scan at seven weeks and I said I don't want to book that until I've had the test on Monday and she was fine with that.

frustratedchick our chromosome karyotyping was also fine. Other than that, like keziah I have thrombophilia so will be on clexane throughout and also have raised NK cells which the lister is treating with prednisolone. However, I've had two miscarriages, one natural and one assisted conception, and appear to have had implantation this time so maybe in my case the thrombophilia is the bigger issue. If lissy is an example, then ARGC sound great. You're in a good place.

Beginnings Can't believe I missed your post where you wrote your HCG levels. So a line is a line. Yippeee! So pleased for you!

beginnings I'm sending you loads of calming thoughts for the rest of the week. Fully understand a wobble - to be honest I'd be surprised if we didn't have them during this process. I hope your DH spoils you rotten....

Lucy hadn't realised it was going to take that long with your Humira treatment. But let's hope it all ends in a BFP, after which it will all seem like such a short breeze.

Frustratedchick welcome. I'm waiting for my first ARGC consultation, which is scheduled mid-Oct. They are very thorough over there by the sound of things. Like my GP said, Mr T is really a scientist, so he will want to focus on the scientific side of things and will always want to know why something hasn't worked if that were to be the case.

keziah still so glad about your BFP.

Hi to all

Nothing exciting to report here.....

Hello all

I think this is the thread for me! I posted on mumsnet for a while when I thought it was just bad luck that I wasn't getting pg and assumed everything would work out soon.

Nearly 2 years later I've been diagnosed with endometriosis. It's probably stage 4 (severe) as I have 4cm cysts (endometriomas) on both ovaries and at the HSG x-ray thing my uterus was clearly twisted all out of shape which will be due to adhesions. On the trans-v scan they do they could only find one follicle total which is clearly pretty rubbish.

On the plus side, my tubes are clear!

I'm 33, dh is 36 and fine. My fsh is 8.3 which isn't awful and my AMH is about 15 which isn't awful either.

So... I'm having a laporoscopy on Friday then straight after I'm taking pregnyl to stop me ovulating them I'm starting the injections to start me up again some time in September. That will be my one free NHS round (I'm Leeds based).

I'm not holding out much hope. Not in a negative way, more in a face the statistics way.

Is anyone else's infertility endo related?

beginnings- WOO-HOO !!! I wish I was able to log on sooner, as I would've said the same thing....a faint line is still a line! Sending you calm, zen-like thoughts. A weekend away to relax will be just the ticket!

lucy- I know what you mean about the waiting. The months in between my failed cycle last October and my appointment at ARGC were the most frustrating and helpless months. But it's SO worth the wait at the end, I promise. Just keep the big picture in mind...

keziah- How goes it, chickie? I got a call from the clinic today...my NK numbers are creeping up, so it's back for another intralipid on Friday. Midwife appt. on Saturday, and I'm 12 weeks next Tuesday! YAY!

frustratedchick- I am currently almost 12 weeks pregnant with ARGC. I had no idea about immunes, but last year we had two cycles at another clinic, one ending in miscarriage and the other failed. When we decided on ARGC, I had heard about how intense it was, but I was prepared to go the whole hog, and I'm glad I did. They really keep on top of things, especially when it comes to immunes issues. Like I said to Keziah, I have to have another intralipid on Friday as my numbers are creeping up. This is my third...I had one right before egg collection, and another after embryo transfer. They will continue to monitor my immunes until I'm 28 weeks. I'm on clexane, aspirin, prednisolone, cyclogest, AND a progesterone shot, which they do for pretty much everyone. I was on the long protocol, which became a bit longer because I had a cyst while I was down regulating, so I had to wait for ANOTHER AF. But I will sing praises to the ARGC forever, and I will always recommend them. If you have any questions whatsoever, please don't hesitate to ask me...

Hi scrummy, Italian, womanly, fretfree, and rowing. Hope everyone is doing well.

AFM, super tired, and still nauseous, but not so bad as it's been. Please please please let it be the beginning of the end of the morning sickness! Boobs are still killing me, though (sorry, tmi???), and feeling a little twingy crampiness, but I think that's just everything stretching in there. Midwife appointment on Saturday will ease my mind, I'm sure. So intralipid on Friday...good times....

frustratedchick and level welcome.

Beginings you go girl, hope all is well.

Love to all, off for 4 days so speak soon.

Welcome to frustrated and Level - not an expert at all on either immunology or endo, so can only offer hugs of support and leave the technical knowledge sharing to those with experience.

beginnings - Congrats for the line and fingers crossed for it getting darker. Are you going to take a test with you for the weekend?

lissy - 12 weeks :) what a milestone!

I saw the dr today. According to the dildocam I have follicles developing fine, and my Estradol levels are ok. I'm going down from 75 to 50 on puregon and have another blood test / dildocam on Friday. When I phoned up the nurse this afternoon for the blood test results she thought the ovulation trigger could be next week, but maybe the week after. Given that the insemination is 36 hours after the ovulation shot, I guess that the latest possible day next week will be wed pm for shot & Friday for IUI, else the timings would be at the weekend.

Hi Level, I'm afraid I don't know anything about endo, but am sure someone will be along soon who does. On the plus side your AMH and FSH sound really good, so fingers crossed those docs will be able to help you get your BFP.

Frustrated lucky you not having to take Humira. Let's hope we do get to cycle at the same time. And maybe Scrummy if there are no hold ups for you!

Lissy wow, nearly 12 weeks! All of the immunes drugs you have to take and the intralipid must be a bit of a pain but I bet it's reassuring that you're having such a close eye kept on you.

Fretfree glad your cycle is going well. Do you have one or two lead follicles yet? Some clinics do IUI on the weekend too. Mine did (had mine on a Saturday morning).

Hi to everyone else. Sitting here with alcohol swabs at the ready, waiting for courier to bring me my drugs. I'm hoping I don't get too many yucky side effects as we're off to the seaside for the weekend tomorrow. Yippee.

level welcome. I had endometriosis about 14 years ago that was removed laparoscopically and never came back. You have my sympathies. That doesn't appear to be an issue now.

fretfree most clinics do things at the weekend so I wouldn't have thought that'd be a problem.

lucy best of luck! Just keep nice and quiet and you'll be fine.

lissy so glad things are continuing to go well.

So today's drama is a small bit of spotting. It's definitely old, not fresh (sorry TMi) and the hospital are extremely relaxed, saying that it's "relatively common". I know it is, and know lots of people who had spotting early on and went on for everything to be fine.

Just taken Humira. Feel a bit tearful. Mainly because it's such a serious and controversial drug. The risks and side effects are all pretty scary. Also after months of trying to be really healthy and taking great care over what I eat it feels so wrong to inject myself with chemicals that are going to lower my immune system and probably make me feel crap. I so wish this was easier for all of us.

Beginnings try not to worry about the spotting, I did read in a Zita West book that it's even more common to spot after IVF than a 'normal' conception.

Hello everyone,

kezia, lissy -Your stories make me feel so much more hopeful about argc, immune treatment and ivf. Congratulations to both, how very exciting...Cant wait. I have never paid so much attention to a calendar in my life and I find myself scribbling dates all over the place, trying to second guess when I will be doing treatment, when I may find out if I am pregnant, when due date may be. I have turned into a crazy wobbly woman - and until a few years ago, I didnt even like babies!

Lissy goodness the IVIG must have costed you a fortune! The nurse quoted me £1500 (depending on your weight?). But if the ivf is successful, I will do as many Ivigs as necessary! I am trying to budget for the ivf with argc with everything including hysteroscopy (which I need to do apparently), repeat immunes, ivig etc, freezing of any embryos if lucky. Would you say that 10k is right - or should i need to budget for more? the clinic hasnt been v forthcoming about this.

beginnings the spotting is I am sure quite normal in ivf as lucy said but its good you talked to the hospital. When is your next test?

lucy - I am really really sorry about how you are feeling, I am sure most people on this thread do. Its hard for those who are not going through fertility treatment to understand I suppose. I have never been prodded so much in my life, been so up and down, anxious and under the effects of drugs messing my system up as in the last year or so. I can imagine that humira must be a pain but just think that its one step in the right direction, a bit closer to what you want.

Lucy I know hugs aren't really an MN thing but bugger that this afternoon and consider yourself squeezed. There is so much caught up in the physical act of having to inject. It's totally counter-intuitive to stick a bit of metal through your skin, added to which the fact that you have to do it at all has all the implications of why we have to do it, I.e. Since we need help to have children. Then you throw in the fact that we're putting not nice or natural stuff into our bodies and it all gets a bit crazy. of course you feel emotional and as scrummy said yesterday, it would be odd if we didn't.

You are doing the right thing, and you are in a great place.

Thanks frustrated and beginnings. I needed that squeeze and it helps to know other people are going through similar stuff and understand how I feel.

Beginnings - I think it is totally normal to have wobbles around ivf and after bfp's, it is something we want so much, have so many hopes and invest so much time into.

Lissy - glad all well. Wow, I am 4 days behind you! I have my last intralipid next thursday as my clinic discharge at 8 weeks and don't monitor immunes, which I must say is scaring me lots but the consultant told me the placenta should take over at 12 weeks. I think I would willingly pay for an intralipid every few weeks just for the reassurance factor but not allowed sadly!

lucy- Big hugs coming from over here as well. I'm sure it's so scary, but you're putting your faith in a clinic that has excellent successful numbers. I hope it's reassuring that they certainly know what they're doing. I hope you can relax and have a lovely weekend at the seaside.

frustrated- I'm lucky in that I didn't need the IVIG, I was given intralipid instead. Intralipids are a soy-based infusion, and it only costs £300 per go. I would budget between £10-12K just to be on the safe side, what with all the blood tests and drugs, etc. The comforting thing is that you can return any stimulation drugs that you haven't used, except for the Pregnyl, and you will be credited. And the scans during stimulation are included, so that's also helpful.

beginnings- Sending you calming and relaxing thoughts.

keziah- I know that you will be very vocal about immunology when your care switches over. Is there no place else you can go to have that monitored?

hi everyone
its nearly the weekend!!!

Welcome frustratedchick and level

I've been looking at ARGC, i've heard good things about them. how have you found them so far? they seem to have a long waiting list.

x

I just have to say that I love the reference to the "dildocam". It's such a spot on description.

My surgeon for tomorrow has asked me to bring in my prostap so he can inject me which is cool because it's one less thing for me to have to inject myself.

frustrated What is IVIG and why do you need it?