Bus 9 - Donkey Cart departing soon, all aboard with ivf, pcos, endo, sub/unexplained fertility jump on

[Marvellouslymadmum]

New thread 😊😊

@thislittlebird literally just started stims for third cycle after checking every month since January for favourable conditions. My fsh us now sitting 8.4 to 9.7 whereas was half that prior to covid 9 months ago. No plans for hols at present as went to lanzarote in Jan, hubby may be going to US for conference in June but its potentially 2 transfers and 15 hrs on planes then 6 hr drive after so may or may not be joining him, depends how this goes.

@kerrym87 what’s your protocol this time? Glad you finally got round to trying again. I dread to think what my FSH would be now.

That does sound like a long trip, see how things go.

Hi, jumping on with PCOS ! Progesterone levels of <1nmol so I'm not ovulating. Going to try and start a new lifestyle tomorrow in the hope that it works to bring me to ovulate! X

@thislittlebird short protocol due to pcos. I think due to supplements and lifestyle /diet changes my oestrogen is lower and was suppressing my fsh a little, although it's still normal. I don't behave like typical pcos and egg quality is an issue even though was only 35 at first cycle
@pm24 feel free to message if you'd like some advice and sources of good info x

@thislittlebird Fab news about the last sperm result!

@pm24 Hi! 👋

How is everyone?

I don’t have anything meaningful to report. I called CAREpay to try and get our private funding sorted for multicycle. Person on the phone was a bit useless.

Upshot is, she said I need another review with our consultant with our plan going forward in order on onboard us. My review letter literally states what we’re doing going forward.

I’ve emailed CAREPals. They’re going to check with the consultant after a pretty long email. Another review to say the same thing seems a bit like a colossal waste of money and a bit of a money grabbing scheme to be honest.

I’m waiting for the clinic to get back in touch with me. Hopefully, it’s just a quick admin thing they need to do with us. I just want to get the payment and paperwork sorted and have time to order meds for June/July time. I’m aware how long this all takes and would like to get the ball rolling! This doesn’t help with the stress of it all. Who thought paying for it would be more complicated than our NHS round!

@pm24 i have pcos as well happy to chat about it if you want and help if I can

@Lauralozzle were at the nhs ivf stage and they should refer us mid April and said it’s a 6-8 week wait from referral to start with the clinic. Does treatment not then start really quickly? Surely meds are readily available? That’s so frustrating for you to have those blockers when it should be easy to transfer from nhs to paid!

@Alexis7890 I had a bit of a usual wait from first clinic appointment to being ready to start due to my thyroid and prolactin tests. Once they were okayed, then process or sorting out consent forms and getting protocol probably took about 2 months before we’re were ready to call on first day of period to start. Meds were quick, only a couple of days to arrive.

I’m guessing we’ll have to do consent forms again, and get our new protocol properly sorted which is why I want to get on with it. I imagine consent forms/protocol doesn’t arrive until after we’ve paid. So, say we pay April, then wait for consent forms (say a week) fill them in and wait for clinic to sign them off (say another 2 weeks) we’re nearly through April at this point. Then say another week/2 weeks for protocol to come through. We’re in May at this point, then I can order meds ready to start June/July time for clinic to get that sorted. I want to have meds ready for cycle day 1 and as I’m short protocol this time, I’m not sure if I just jump straight onto stims on CD2 or if there’s a bit of prep before hand (I was long protocol last cycle). IVF is a waiting game but I at least want my ducks all in a row so I’m prepared to start and have everything I need.

Meds are ordered, they don’t have them stocked up at the clinic for us. They order through Stork.

I agree, you would think the transition from NHS to paid would be quick because they get your money. We’re also having add ins so… more money!!!

@pm24 welcome to the cart!

@Lauralozzle sounds like you’ve been very unlucky with the clinic experience. Ours went through very fast and before we knew it we had a second failed cycle lol. When I used CARE briefly I had some admin/money debacle with them but I can’t remember what it was, I just remember being in tears on the phone. Par for the course. This process seems very slow for protocol and meds? why can’t they tell you the protocol?

Yeah DH’s dna seems good but we basically have no chance naturally because of the antisperm antibodies. It feels very final and sad.

I have acupuncture tonight, really can’t be bothered to pay for it right now but it is what it is. Need to replicate cycle one conditions as much as possible, if I could go back to being 37 that would be great.

Doctor said DH’s results were good to go, I emailed back saying when can we start and he said whenever you want. So I’ve emailed to book a nurse assessment tomorrow, I’m in a race against my period now which could could tomorrow or any other day this week and the assessment needs to be before that. not even sure when I ovulated this month, didn’t get my usual signs so AF’s arrival is a bit of a guess.

If we can’t get in this month we’ll do next month. Both options mess up my weight loss plan for getting into swim wear in 🇵🇹, but I’ll have to just carry on with lots of walking and up the protein, try not to gain a ton during the cycle.

@thislittlebird Last time I had a sheet for the protocol that basically had everything on it, dose etc. I didn’t get that until consent forms came through. I’m going on how long it took last time. Usually a couple of weeks between each step. They’re not fast. I was pretty pissed off to be honest, when I called CAREpay, after I explained we’d had our NHS cycle they first tried to say we’d need initial consultation, re-scan bloods for everything. I said we’d been with Nottingham and she didn’t realise I meant CARE. Didn’t ask for my details until I got a bit funny with her and looked me on the system. Then was like, you’ve had a review? Oh, well I don’t see that you’re ready to start with a plan you’ll have to call CAREPals to book in a proper review. Hence my slightly long stroppy email to CAREPals. Still not heard back from them yet about what our consultant has said.

Do you find acupuncture useful?

I’m happy you’re ready to get started again. Fingers crossed you can get in this month. Wear your swimwear options anyway in Portugal!!

@thislittlebird have you found ivf causes weight gain? Just triggered one final go at ovulation inductions injections and ivf is our only option if no success. The cyclogest bloating is next level awful and since being on injectables I’ve definitely gained some weight and I’m hating it, doesn’t feel like my body anymore! I hope you get your assessment before your period!!

@Lauralozzle Hope you hear back soon, doesn’t sound like a great system they have!!

@Lauralozzle And this was all with CARE? That surprises me how they’re quite so slow.

Acupuncture is a weird one. I felt like it would do nothing but it did seem to help sort my light periods out, so I do wonder if there’s something in it. That or coincidence. Either way it’s relaxing and you get to have a chat about your ivf struggle shite.

I will feel dreadful if I don’t get some of the weight off. I already feel crap about being forty and infertile, want to feel as good as I can about everything else. But the ivf cycle will mess it all up, will just try my best to keep up the walking and good eating habits.

@Alexis7890 I can’t say I do, especially, I don’t seem to react much to the stims at all, including Cyclogest. I can go entire ivf cycles without any symptoms. That’s not to say it doesn’t make me put on any weight, but I’ve not noticed it. Being over 36/37 seems to have been the biggest metabolism destroying factor for me, I’ve had to work a lot harder at all this food and exercise malarkey since then. My failed ivf sadness and then bad eating are another culprit.

My face doesn’t feel my own after prednisolone. I wish I could go back to my pre-pred jawline, makes me worry how much I’ll gain if I have to go on it for months. Assuming that’s something they might try eventually if the ivf fails again.

@thislittlebird I feel you, I get so bloated and weight gain, shape changes, it takes about 4 months post ivf to see much difference of my usual self. I'll be having pred this time if we get to EC, anyone that's had it do you always get moon face on it? I'll look like a chipmunk 🐿 😂

@kerrym87 how's the stims going? Why are they giving you pred? It's been 2 years since I took prednisolone for my crazy eczema, quite high dose which tapered off for 6 or more weeks and my face has never gone back to how it was. It's so upsetting, I hate photos of myself smiling now. Everyone else seems to lose their moon face within a few weeks or months, don't love being the exception :/

I went to do a nurse assessment today, had my thyroid tested and picked up my first gonal F pen of cycle 3 😬. I'm shitting it tbh, after the way cycle 2 went there's not much hope. I need to tell them what drugs I have leftover and they'll order the rest.

Plan is an IMSI cycle with PGT-A of any excess embryos, which was the plan before but it never transpired because it all went to shit. Meds will be probiotics leading up to cycle then weekly, gonal f 225 stims (was supposed to be Menopur but there's a nationwide shortage?), clexane, lubion every other day, cyclogest twice per day and a double trigger of ovitrelle and suprecur. Luckily I have a ton of cyclogest leftover so don't need to buy that.

@thislittlebird stims OK, they've started me on fyremadel tonight early, guessing I'm responding a bit quick and for first time they haven't increased stims. I'm getting steroids as I have a few inflammatory/immune issues endo, ME etc to see if it'll help

@kerrym87 interesting to see how you’ll get on with steroids. They won’t give me them because my NK cells came back ok, but if another failed transfer happens I think I’ll have to have a convo about trying them.

I start stims tonight, all being well. Going for a baseline scan today. Slightly higher dose this time, will be interesting to see if I respond well or not so well.

@thislittlebird getting nervous now as scan ad bloods will be Monday to decide when to collect. Doxycycline is bashing my gut though 🤕 also being moved into ovaleap for last few days, will be easier than mixing menopur up....
Fingers crossed scan and bloods good to start. I think k it's a bit if trial and error and seeing what works as with me I don't respond typically for pcos. They're only starting a low dose steroid I think when j asked as I have IBS,,PCOS, endo and ME, all of which have a immune component and inflammation with them so he felt it worth a shot withput immune profile (its mhs they dont do it here) as evidence isn't great but is coming forward work some positive effects.

Hi everyone 👋🏻 hope you're all doing well? I haven't been on much as we had a last minute move and are now in somewhere temporary for a while with no internet!

So I've had no chance at all to catch up but hope everyone's doing well

@Marvellouslymadmum hi! Hope you're ok, the no internet sounds frustrating!

I'm still here, forever in the donkey cart. Might throw in the towel soon, within the next year probably. I'm being flippant but 5 years wasted on this is enough, just had another EC and have zero expectations, getting very tired of it all.

@Marvellouslymadmum Hi! Last minute move and temporary accommodation sounds like a nightmare! Hope everything is all good for you.

@thislittlebird I hope you get some decent news following your egg collection. How did it go?

So, we have a tiny bit of progress. We went away for a long weekend to Munich, enjoyed ourselves. Didn’t limit anything, so beer and pretzels were an everyday occurrence!

Got back the other week, chased up CARE. Consultant happy for us to start in June, not May, as I had hoped, based on antioxidant sperm test as they wanted DH on proxeed for 3 months from the date of the test.

Finally managed to sort out CAREPAY. The invoice for the multicycle round is in my inbox and we have about a week and a half to pay, so I’ll be sorting a loan out for that soon.

Think I’m going to really try and focus on these next 6-8 weeks to clean up my diet as much as possible. Think I’ll put all the crap in a box somewhere and hide it until this round is sorted. I feel so disgusting and fat at the moment. My period arrived yesterday, so, that’s not helping my mood either.

May will hopefully be when consents and protocol is sorted. I hope my next period isn’t a longer cycle though. If May’s cycle and June’s cycle is same length as this cycle, it’ll be happening in July because we’re away end of June for a break with DH’s family in the Peak District - I don’t really want to spend one of those days coming back to transfer.

@Lauralozzle it went ok so far! Still in the hunger games as we speak, so will know more on Monday. Had higher dose stims (225 Gonal F) and a dual trigger this time, 14 eggs collected, 10 mature, 9 fertilised and 9 are still ok on day 3, but one is a little slow/behind. But day 3-5 is where we might lose quite a few, we shall see. We found out DH has antisperm antibodies in the last few months, which is why his sperm barely move. This explains a lot about why we haven’t conceived naturally, they’re all immobilised by his own immune system. Can’t really believe it took 4 years for someone to tell us that, but I’m pleased???? we now know how unlikely it is we’ll conceive naturally. And knowing about this now we added IMSI in and they prepped his sample a little differently. Hoping to do a fresh transfer on Monday morning but that relies on there being something to transfer. If there’s any excess embryos we’re going to PGT-A test them, since I’m not getting any younger here.

Glad you enjoyed Munich! We are off to Portugal next month, so at least I’ll have recovered by then. Definitely do the proxeed or impryl, I do think it helps.

I was on a weight loss/fitness mission from January and my vaginal ph/thrush/bv issues do seem to have improved since I’ve lost a few pounds, makes me wonder if there’s a connection. Not been very good the last couple of weeks because stims and EC but hopefully I’ll feel better in a week and can be active and eat healthily.

It’s crap waiting, but hopefully you can get in before the holiday, it’s a very frustrating thing anyway without more delays. If not you have another holiday to enjoy!

@thislittlebird I’ve got everything crossed for you. It does sound ok so far, hopefully you’ll get a few eggs to test and freeze. Hopefully you’ll get some good news come Monday. I know how hard this is, hopefully the IMSI has helped too.

I put DH on the proxeed before the test, but an extra couple of weeks won’t make much of a difference and it keeps the clinic happy!

Portugal sounds lovely!

@thislittlebird it's hard waiting to see how many made it isn't it? Of 14 eggs we got one embryo out of 5 fertilised, hopefully with imsi and great fertilisation rate even with drop-off you will have some spares.

@Lauralozzle I'm in tww post transfer of only viable embryo, OTD is Wednesday, wish it was here but at same time I really don't want to know. Hard keeping occupied with major fatigue and bloating and digestive issues taking a while to settle post EC.
How're you getting on? Sorry if you already said, mind's a mush!

@kerrym87 Fingers crossed for Wednesday. The 2WW really is difficult!

I’m ok. Nothing is happening here until at least June. I’m in the ‘in between cycles’ stage where time drags on and on!

@kerrym87 i hope so! It’s just such an unpredictable process. Could end up with none on day 5, dreading Monday tbh. It’s the last cycle we’ve pre-paid for, so it feels like all of our eggs are in this basket. We can’t afford to do more ivf straight away and wouldn’t want to really, it’s been a shitty few months and we need to save up and decide whether to try again in 6 months or so, or just give up.

Test day is Wednesday? Fingers crossed for you!

@thislittlebird it's a nightmare, you don't realise how much you need the internet until you don't have it!
You and me both in that long term donkey kart! I'm giving up with the nhs, they referred me onto gynaecology on the nhs last November and I'm still waiting, said it'll be 9 months so in essence I'm starting all over again trying to get the laparoscopy! 🤦🏼‍♀️ I'm not giving up completely though, I've managed to lose a stone in weight and am starting to look at clinics abroad for DE someone on another thread I'm on that's the same age went that way last year and just had triplets! There's always options. How many made it? I do hope a good few!

@kerrym87 how did your testing go?