ARGC experiences - especially after failure elsewhere?

[Iwouldbecomplex]

I have had 4 failed ICSI own egg cycles at Care in Manchester. I have stage 4 endometriosis and adenomyosis, but otherwise all of our tests / investigations are fine.

My husband and I are exhausted by it all and don't feel we can continue with treatment for much longer. We are now considering a final cycle at ARGC. The thought being that we will have one last try with the clinic who are supposed to be the best, throw everything at it and if it doesn't work we will know we tried everything.

We had a consultation with them last weekend and are now mulling it all over. I was hoping to get some opinions / experiences from people who have had failed cycles elsewhere and then had treatment with them please. What are your reasons for infertility, how many failed cycles did you have elsewhere, did your treatment at ARGC work or not, how did you feel it was compared to treatment you'd had elsewhere etc.

We also live in Manchester so am trying to get my head around the logistics of having treatment there. I would stay in London for the full 2 / 3 weeks of stims / EC / transfer and that's not an issue, but I'm worried about all of the other appointments. Even if I only needed to call in to the clinic to pick something up it would mean a full day off work because I'd have to get the train down and back. Could anyone shed any light on how much time off I'd need aside from the stims?

I know that the monitoring cycle requires 3 sets of blood tests but 2 could be done locally so I would only need to go to ARGC for the mid cycle ones (which would include the immunes testing).

Then assuming I needed full immunes treatment before starting my cycle how much would I actually need to be at ARGC for that and would I know in advance when I had to be there or is it quite short notice?

Then they said they would check at the beginning of my cycle if it was a good month to cycle - does that mean blood test / scan on day 1 of my cycle and does that need to be done at ARGC or can it be local?

Then 2 / 3 weeks ish in London for stims / EC / ET

Then after ET I assume I would continue with immunes. Are there any other things during that time I'd need to actually go to ARGC for?

And then if I got a BFP I know they would continue to monitor me and I would keep having immunes. What does this entail logistically?

Finally costs. I know it's crazy expensive and I know you don't really know the costs upfront because things can change very last minute with them in terms of drugs / dosage / extra blood tests etc. Can anyone who has had a cycle with full immunes there tell me what they spent? I want to know worst case scenario how much it would cost.

Thanks for any help you can give.

You have had a really tough time
My experience is now 3+ years old but may be of use and hopefully will encourage someone with a more recent experience to tell their story.

We had only 1 IVF cycle elsewhere (nhs) before ARGC. I was 33 at the time. Had low AMH and endo. Nhs ivf was a disaster with crappy day 3 embryos transferred.

Argc put me on the full immunes treatment so humira before starting, IVIG during cycle etc. We got 7 blasts. Could not believe it. 2 transferred and then positive pregnancy test. But followed by miscarriage at 8.5 weeks. Did an FET 6 months later with 2 transferred and we now have twins.

It was not easy. Argc is tough. Even once you get a positive test they make you come in for “bloods” every 2 days. It’s awful I found it so hard. But at the same time they got me pregnant. I had a lot of IVIG and a lot of immune tests. We spent a fortune (over £30k I stopped counting it was probably closer to £40k) in total however I honestly believe that a normal Ivf place would never enabled me to have children so it was worth it. Lots of people had travelled from afar and stayed put. You become friends with other patients as you are there so much. A lot of people hate the idea of the place but do what feels right in your heart.

I haven't personally used them but know people who did.....it's an IVF boot camp and you have to be committed to the process....some have had to take 6 weeks off work due to daily/twice daily blood tests and scans

The cost is also eye watering! Would you be better looking into one of those guaranteed baby packages with other clinics where you pay more but get unlimited goes until it works?

Are you having treatment for endo? X

It is boot camp like but for my fresh cycle I only took a couple of days fully off work. Wfh day after transfer, my egg collection was on a Saturday. I worked (in London) the rest of it. I was late occasionally and popped out for a while in the middle of the day. Obviously you can’t do these things if not working in London.

Thanks all.

@Waterdropsdown - thank you for your story. It's reassuring. We have only had 7 eggs over 4 cycles, 2 blast transfers, 1 day 3 transfer, 1 frozen embryo. 2 chemical pregnancies and 1 BFN. I'm a poor responder to the drugs although no one seems to know why. My hormone profile is ok. I'm 37, but AMH is ok for my age.

I have no option to work from home / remotely - my job is based in the office. My main worry is the time I would need off work and the time away from home alone. My husband would need to stay in Manchester to work so could only come down when absolutely necessary. I used to live in London but everyone I know has now moved so I'd be on my own. I was thinking I'd need to stay from day 1 of my treatment cycle when I went down for the test to see if I can cycle that month. I'd be starting drugs the next day so would need to be there for the daily tests in the first week and twice daily tests the second week. Am I right in thinking you have to be there early in the morning for bloods then you have to hang around in case they need to see you again that day?

Then I'd need to be there fore egg collection and the day after to recover, and then I would need to be available for transfer any time day 3 -5. They said they might transfer one embryo day 3 and another day 5 depending on how they looked. It would be more expensive to get last minute trains back and forth than to just stay put. I've previously stimmed for 15 days so all that plus EC and ET is around 3.5 weeks in London. Am I reasonable in thinking that it wasn't be practical to come home during any of that? Same week train fares are around £200 return. Flights are £300. A central studio on air bnb is about £100 a night.

@itwasalovelydreamwhileitlasted - I don't qualify for any of the finance packages / refund type ones due to my low egg numbers and failed cycles. I've had 4 cycles with Care, one was nhs and 3 self funded. I very much feel that they're at a loss with me now - they just keep wanting to do the same thing over and over and it doesn't work. Yes it's a lot of money at ARGC, but we're at the point where physically and emotionally we don't feel we can carry on with treatment for much longer. Our lives are on hold and we need to either have a baby or stop trying. That's kind of why I feel like we need to throw everything at this last cycle - full immunes, the ARGC method with the intensive monitoring etc and then we will know we have tried everything and will be more at peace with it if we stop treatment.

I'm having surgery in the new year to remove some adhesions atoms my ovaries and help with access at egg collection. I'm not touching any of the endo around my bowel as too high risk. Not on any meds for it as been TTC and meds would affect that.

I have endo too, I am pg after a successful cycle at the Portland but my next step would have been to get a second opinion from Colin Davis at the Evewell. He’s an endo specialist and has a fantastic reputation. The Evewell also gets good feedback. If you think endo is the primary cause this might be an option. I’m sure it’s not cheap but shouldn’t be quite as bad as ARGC!

I think that’s really good advice from peaches. I’ve not had any experience of Ewell myself but heard good things. I was going to come on and say look up Dr Gorgy as that’s another immunes option (but don’t know if this is a place you can actually do ivf).
I used to do a lot of “research” on fertility friends.co.uk. There are pages for the different clinics under the london section. It was so useful. I’m sure you could find someone to ask about long distance Argc patients as well.

Obviously I’m no doctor but by you saying you’ve had 2 chemicals I think you are doing the correct thing going for the full immunes approach.

Re your question on how the day works (this is after you’ve done the initial immunes which might take a couple of months of a random trip here or there that can be planned) at Argc it’s day 1 bloods early (730) and a scan straight away. They call you later in the day and say if that’s you starting (think depends on your fsh most will start then) you go to a class to tell you what’s going to happen, you have a hysterscopy thing the next day and start taking your drugs. I don’t remember on day 2 when you get bloods probably after the hysterscopy. Then from day 3 onwards you do bloods every morning early and every other day a scan after. About day 8/9 or so they have you come back at around 12 for more bloods. Then the double bloods carries on until they tell you it’s trigger time. At some point in this you also have another immune test done. After trigger you get a day off. Then in for egg collection and bloods. Then it’s dependent on your embryos but I can’t remember if you have to go back for bloods any day before transfer day. Then after transfer they ask you to come back a couple of times to check progesterone before the test day blood test. Then it’s a whole another section of blood tests to check hcg.
Hope that helps a bit.