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

@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.

@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.

@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 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 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 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 🐿 😂

@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 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!!

@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!!

@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.

@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 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!

@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!

@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

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

@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.

@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 i hope so, it’s all such a miserable process when it doesn’t work. Are you guys going anywhere? What’s next for you?

We’re a bit confused because the sperm specialist doc has just told us nothing more to do, all the tests are good for DH. Except we’re stuck here with antisperm antibodies and apparently that’s fine, they don’t even suggest anything for it. It’s so frustrating. Back to ICSI we go, I guess.

@thislittlebird that's great about sperm! You need to look after yourselves as there's so much you'll have both and to do and not done which makes life less enjoyable throughout this. You're more likely to be relaxed and destressed which can only help x

I’ve not been on much lately, nothing happening for us, other than me getting grey hairs, and can’t say when we’ll try again. Oh, except my husband’s DNA fragmentation was “incredibly good” 🫠

The only upside is we booked two holidays because it’s my 40th and we’re childless. Going to Portugal for a few nights in May and the Lake District for a week in July. I felt bad about spending the money, but our next IVF cycle is basically paid for, bar meds.

@Alexis7890 Holiday in May sounds perfect. We all really need it after all this rubbish!

I have an update. We did SOS oxidative stress test and it came back positive. Levels high enough to indicate DNA fragmentation but not severe. Glad I got DH on proxeed two weeks ago!

Advice is to cut back on caffeine (for him) and eat a better diet. He needs to be on the proxeed 3 months though so looking at cycle in June/July time.

@kerrym87 oh how frustrating for you! Yes be pushy with them!! Letrozole didn’t work for me (tried it 4 times) so moved to gonal f injections, this is the third and final go with them before ivf. They worked once, failed once so waiting to see what happens this time!

@Lauralozzle will be a great holiday!! I’m hoping we can plan one for may as if this cycle fails like I think it will then we will have 8-12 weeks before we can start ivf so hoping to have a holiday in there to enjoy ourselves in that gap

@kerrym87 Hopefully third times the charm!

We have decided on Munich. Just need to book it, which we’ll do next week. thinking end of this month/beginning of next.

@Alexis7890 Fingers crossed for your ovulation induction.

I’ve managed to get my thyroid meds sorted (increased now) and we have the stress test tomorrow. Hopefully we have results for that soon after.

**@Ale@Alexis7890
They want it perfect as it's my third but no idea what the exact parameters are....January my progesterone was rasied fsh 8.4 and my follicle count was half my normal. Feb my progesterone was ok, follicle scan great but fsh was 9.7- they said they wanted below 10 but 10 and above usually means less of a response 🤷‍♀️ I do have an egg quality issue and atypical pcos but if fsh the same again I'm going to push to do it as although it only 36 my egg quality ain't going to miraculously improve as i get older....

What drug are you on, is it clomid or letrozole? X