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

...sorry, should add that i live and work in london!

Hey lissy - well done on the scan - how incredibly exciting! I bet you cant wait for the next one. Thanks for the explanation of ARGC process - i found it v useful too. One question - i wont be able to take 3 weeks off work - do you think i could take off the second week of stims and the week of EC/ET only? They dont normally ask you to come in for repeat bloods on the 1st week of stims do they!? Also, what time are you normally out in the morning after bloods/scan? I need to be in the office at 9...what do you think?

Hi marmite, I will add to frustrated...

After your initial consultation at ARGC, if you decide to go with them, you'll do a monitoring cycle. This is something that ARGC insists on. The monitoring cycle consists of Day 1-3 bloods and mid-cycle scan to see if you are ovulating. If you decide to have immune testing, this is also done during your monitoring cycle, and is the most expensive bit-£860. All in all the monitoring cycle with immunes will cost £1000.

I was on the long protocol, so I started sniffing down-regulation drugs on Day 21 of my cycle. You'll still get AF while you're sniffing (which is three times a day, so I kept of bottle of nasal spray at home and one in my bag), but once that happens they'll scan you to make sure your ovaries are clear. I wound up having a cyst, so I had to bring on another AF, therefore I sniffed for an extra nine days. You'll be in every day or every other day for bloods, and they'll scan you once you get your period. Once your scan shows clear ovaries, and your lining measures correctly, they'll start stimulating you. You'll stimulate anywhere from 10-16 days, and you have to be at the clinic every day at 7:30 for bloods, a scan every other day, and often they'll ask you to wait around for repeat bloods around noon. You'll get a call from the clinic EVERY DAY from the time you start down-regging to let you know what your instructions are.

When you get closer to stimulating, ARGC recommend that you have a hysteroscopy. They take all the measurements of your uterus, ovaries, cervix, etc., so that when embryo transfer comes, they'll know exactly where they have to go. I managed to get my hysto covered by private insurance, by telling them that I was having painful and heavy periods, and therefore was able to have it at the Wellington. If you are unable to do that, a hysto at the clinic is £1160, or somewhere thereabouts.

Closer to egg collection, if you're having immune issues, they'll recommend therapy for you. I had my first intralipid infusion a couple days after my egg collection, then a second the day after my embryo transfer. They'll put you on loads of medication after the embryo transfer, including steroids, blood thinners, pessaries, etc.

I have spoken to a lot of women who live pretty far away, and they come into London for the two weeks of stimulation and stay at a hotel, hostel, rental flat, friends, etc. I don't think it's necessary for the down-reg period, but the stimulation is super important.

ARGC is a very intense place to get treatment. But I found a comfort in the intensity, as I knew that this place was going to do everything it could to get me pregnant and keep me pregnant. It is VERY expensive, but small comforts are that scans are included during stimulation, and any stimulation drugs you don't use can be returned and refunded, which is why I think you should get them from the clinic as opposed to an outside pharmacy.

That's about it, I think, other than always having some reading material or something to keep you occupied, because there will always be some waiting around to do. Sometimes you'll go in and do all the things you have to do right away, other times you can wait an hour at a time.

AFM, had a scan yesterday, and baby measured 51.3 mm and waved at me! This morning was the midwife orientation, and it was very thorough and informative. The midwife who was assigned to us went through everything with a fine-tooth comb, and managed to clear up some confusion as to what my appointment was on the 31st. That appointment is my dating scan and nuchal test, but she arranged for me to see a consultant at 14 weeks, as I told her about my concern over the cone biopsy I had last year.

Now I have a whole week and a half before I have to go to another appointment. Wow, a small mini-holiday!

Waves to everyone....have a great weekend!

Hi,

Just a quick one to update - had another dildocam and blood test this morning. I have lots of small follicles, but no lead ones yet. My E2 levels have gone up from 666 (yes - I did spot the connection to The Omen. I tried explaining it to the nurse who gave me the results, but I just met with silence down the phone. Don't think she got the joke) when I had my last consultation on Wednesday to 1015 and the Dr is keeping me on 50 Puregon, with another appointment on Monday morning.

Seems like there has been news for a few of you - I am planning to have a slower read through over the weekend :)

Hey marmite - just thought I would try to answer your question although lissy has successfully gone through it all so may answer this much better than me.

Yes, I think the 10-12k is an estimate per cycle (and dont think it includes the monitoring cycle??). I know its high - its mainly because of the many many blood tests that the argc asks you to do during the cycle. I think its 60 pounds per blood tests and some days you are asked to do these twice!

With the ARGC you'll need to do a monitoring cycle first and then at the end they will advise you which protocol you should be on. This depends on your 'issues', age etc. With the ARGC I will be on a long protocol (although the NHS for some reason asked me to be on the short one and was a bit confused). A long one works for me because I have unexpl infertility, and have v high AMH. You start the LP on day 21 - when they give you a nasal spray to downregulate (ie shut down your system). As far as I know you only need to see them once at the beginning. This phase goes on for ca 7 days? until you get your period (I stand to be corrected here! not sure). Instead, the short protocol starts on day 1 and doesnt have the downregulation bit.

Then on day 5-6 the ARGC asks you to come in for a scan and bloods. In my case, I will also need to do a hysteroscopy on those days. And they train you on how to take the medication. You will then go in to ARGC every morning for bloods and every other day for a scan for about 2 weeks - they call you every day to tell you what meds to take. Depending on how you are doing, they may ask you to come in twice a day for bloods on week 2 of that. Lissy did you do that too?

After ca 2 weeks of stims, you get a day off and then they ask you to come in for egg collection and after 2-5 days for egg transfer (if all goes well!). Then you wait. Thats it. Quite intense I suspect, particularly in the last 2 weeks of the process. I will try to be off work for those 2 weeks.

When you send in your new patient form, you need to include a non refundable cheque for 50 pounds. If you go for the consultation, it will cost you 150 on top of that, I think (including a sperm analysis)

Hope this helps...lissy, lucy pls correct me on all this as I am waiting to do it but havent done it yet!

keziah really wish there was something we could do to ease your journey. Can you go to another GP for some further advise/support? Would you be able to afford a private mw? Considering what you have been through, I think private mw might be worthwhile, even just to have someone you can talk to. That way you can shop around to find someone you feel comfortable with and can be assure they go through this whole journey with them.

Lucy they wouldn't prescribe it unless they knew it was going to be of help. I started my journey thinking we would need help, in fact when I went to see my GP to say we wanted to start TtC (was on medication at the time) I asked what the NHS guidelines weed for IVF! Maybe I should just be a bit more positive, but I thought i wanted to be realistic at my age. And here we are...I daren't think that we shall just have our monitoring cycle and get the green light, but if we do, it would be great to be cycle buddies .

Maybe just try and balance it by eating loads of lovely organic fruit and veg and treat yourself to some yoga/pilates/health outdoor stuff?

Hi level and welcome. Sounds like it's all systems go for you. I hope you have a successful cycle with NHS and that you receive good support from them.

fretfree hope the tests and dildocam showed good progress.

pocket my final assurance was the positive response I got from my GP, when I told him which clinic i wanted to attend. Not that I really needed the re-assurance.

Over here, DH had a successful op yesterday, so we're all systems go for some SWI. I'm due to ovulate on Tuesday. Hope you all have a great weekend.

Lissy - despite being under an immunologist as I have part of my immune system missing (if it got worse I would be on IVIG for life) and having 2 autoimmune condtions and then fertility immune issues the only thing I can get is an 8week scan (had), 12 week scan and see an obstetrician at 15 weeks before my 20 week scan. Normal community midwife not interested! I have a friend who has had 3 miscarriages and she is getting scans every fortnight and seieng a consultant regularly etc (and no tests showed any issues). Think will just end up paying £100 every few weeks for a reassurance scan to a company that just scans as I am so nervous - but not sure they will do anything other than give me pictures and know the baby is still alive at that date.

frustrated Lissyand lucy

I am still doing my research but definately considering ARGC due to its success rates but am a bit scared by the amount of monitoring as I am outside of London but if we're going to invest this much money/time/emotion I want the best possible chance of it working.

would you be able to briefly summarise how often you need to be there during a cycle? and how much injecting there is and also explain the long/short protocol thing as well. how do they decide if you need immunes as well? and lissy is your £10-12K estimate, per cycle?

got my post laparoscopy follow up appointment for the end of september so that is when I need to have made a final decision.

am wondering if its worth booking an initial appointment for ARGC now, if the wait time is 12 weeks. what information do I need to book in with them and do you just pay for the initial consult at first?

Hello

lissy thanks a lot for your post. Thats very helpful, and sounds about right. I was thinking about buying the medicines somewhere cheaper (I heard that asda is pretty good?) rather than directly from the argc but i suspect that its all a lot easier to get them from the clinic, isnt it? Great you needed intralipids and not ivig - I am hoping they may change their minds once they repeat my immune tests.

pocket I had my reservations about argc after reading articles on the internet, but I am v happy so far. lissy will be able to tell you more than me about it as she has gone through ivf with them already (I am waiting to do it in Oct). I first went there in July for an appointment and was v impressed, and have since finished a monitoring cycle. They are expensive but their success rates are impressive. The waiting list for an appointment IS long - I had to wait about 10-12 weeks (but I was told that it was a particularly busy period). After that, everything is quite quick.

level welcome! sorry to hear about your endo. Ivig is a therapy that helps to reduce natural killer cells immune problems. My count is v high and it seems that they reject any 'foreign' bodies, preventing implantation. This may explain why in 2 years I have never got pregnant. And its also the only thing so far that the docs have found wrong - I am 'unexplained' as many are. With ivig they would give me a drip with a solution of globulins (blood product) for 3 hours or so during treatment and probably after a bfp. What lissy has been doing, intralipids, does the same thing but its made from soya...probably a better option so I am hoping I will do that instead!

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?

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

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?

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!

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.

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.

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.

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.

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.

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.

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.

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....

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 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.....