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

993 replies

Marvellouslymadmum · 25/07/2022 17:38

New thread 😊😊

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thislittlebird · 30/08/2022 15:36

@Misty84 yeah we started Oct 2019. Feels like another life. I always worried it would take us a while and I remember saying we need to start trying now. Wish I'd said that a few years earlier.

It's so hard because although we made blasts, and hopefully can again, I feel like I'm about to enter the repeated implantation failure category and that feels like yet another mountain to climb.

You know Faris suggested IMSI to us too and I never really got why. It's just a big microscope that costs more, did he give you any insight into why it can help? Other than they can see the sperm more closely. The suggestion of it annoyed me lol. I might try another doc this time, I'm having the full Lister experience here. 😅

Yeah I'm really not sure about the refund package. I'm thinking we'll likely go with the 2 cycle 10,800 package and start saving again in case it doesn't work/we want one more try. I don't feel like we can justify the 19k when we then have to pay 6k in meds on top, plus any other tests and general life expenses. And they might reject us for it too, so probably shouldn't worry about it.

@OrangeBengal yeah I don't think Evewell do. Care do their own and Access offer packages for a few clinics, including Lister. Is BFN doing new episodes? I didn't realise. I guess it's just an odds game, like eventually you will get a good one but.....it's hard to believe it will happen after repeated failure.

DH is keen to try IVF over ICSI. I think we're going to approach the private consultant and say IF his sample has some good swimmers once the bad are filtered out, can we try it? I don't know what to do for the best, but maybe they're selecting duffers Confused. My dh has motility issues but not bad frag. They can't swim or they're already dead. I think it could be his age, I think his family age quite fast. I might be wrong, but there's no good explanation for this anyone had given us. A small varicocele that we'll get another opinion on.

@Alexis7890 not sure my advice is helpful, at this stage I tell people. I'm an oversharer anyway and just say "actually we're doing ivf". Luckily people have stopped asking for the most part.

Misty84 · 30/08/2022 15:50

I find it crazy that Covid didn’t even exist when you and I started @thislittlebird , thats how long ago it was!!!

Yeah no real justification on using IMSI. Go with your gut. And in your position I’d go with multicycle over refund package too, due to expense.

@Alexis7890 Pretty much everyone I know is aware of my fertility struggles now so wouldn’t ask anything insensitive, but if there’s someone I really wouldn’t want to know, I just smile and say “Oh yes one day, but for now we’re focusing on (insert house/ holiday/ job excuse)!” and then distract them by talking about that!

OrangeBengal · 30/08/2022 21:48

It’s the conversation we all want to avoid. Mostly I’ve skipped the events where this question seems likely, but more recently have said ‘we’re working on it’ @Alexis7890.

I think you’re approach re IVF / ICSI seems right @thislittlebird. IVF is less likely to work if motility is an issue, though I think they can do wonders in the cleaning and keeping the option open will probably help your DH, which mentally is worth a lot.

6 episodes into season 3 of BFN btw, I also subscribe to Woman’s Hour presenter Emma Barnett’s Substack. I started listening to ‘For Trying Out Loud’ today, as even though I get a lot from the guys I currently follow, I needed to find someone who was struggling a bit more trying for their first.

thislittlebird · 31/08/2022 14:17

@Misty84 PRE-COVID™, how depressing lmao.

I think I'm going to see if that guy who does Ask the Expert on the feryility podcast. He's a Lister guy, might see what he's like next. If I don't like him I can change again before we start.

@OrangeBengal I'm basically a hermit now lol. I don't go to much, don't want to get into all this with my friends who all had kids in lockdown. If we get enough eggs we'll ask to try IVF on a few maybe!

I've read a bit Emma Barnett's issues, it's nice to hear someone in the public eye talking about it. But yeah, all of the main podcast hosts on BFN or on Fertility Podcast or Emma B succeeded first or second time afaik. I just don't think that's quite the same as when you've had multiple failures, it becomes like another dense layer of infertility altogether. BFN introduced that Welsh girl, she and her husband had a really tough time, I found listening to her more relatable. Not sure if you've heard her yet?

What's For Trying Out Loud, another podcast?

OrangeBengal · 31/08/2022 15:22

Ah, yes @thislittlebird I remember her and I did relate to her more. Does she have her own podcast now? It was also really nice that it was both her and her partner on BFN, same thing with Trying Out Loud (podcast).

I’m a bit of a hermit too now, which I think my husband worries about. But with WFH and getting used to it during the pandemic, it’s just so easy to be one, which is probably not good!

First acupuncture session tomorrow - eek! I hope I like as I’ve booked in a course of treatment!

Alexis7890 · 31/08/2022 16:54

Thank you for all of the tips 😊 I’m generally an oversharer and quite open with people and lots of people in my life know what’s going on, something in me just doesn’t want those people to know.

Had the latest appt with my consultant who because of the random bleeding and after doing an ultrasound and seeing that I have responded worse to 5mg of letrozole than I did to 2.5mg, he has ruled this is a dysfunctional cycle and to try 5mg again in a new cycle before giving up on it. He kept saying ideally letrozole will work for you and then when you want a second baby it’s much easier and cheaper……how about we focus on one baby which is currently nowhere on the horizon?! I was getting incredibly annoyed with him and those comments!!

does anyone take inositol? I was taking it and stopped as the one I used was stopped and that’s the only thing that’s changed between 2.5 cycle and 5 cycle so I wondered if that could be a reason?! I’ve spent far too much time thinking about what did I do last cycle (even though the meds didn’t even work) that I’m not doing now that could have caused this cycle to be even worse!! No follicles over 10mm (10mm was the biggest last cycle as well) and an even thinner lining 😔

sorry I think you’ve all just got my frustration and overthinking download!!

thislittlebird · 01/09/2022 19:44

@OrangeBengal i started listening to FTOL today. I listened to an ep at her 4th transfer. It was good to hear someone who gets this, who understands how it feels to have time working against you, to ask why it’s never your turn. I’ll be listening to more, I’m sure!

How did the acupuncture go?

@Alexis7890 a second baby? I don’t think that’s helpful at all, what an odd thing to say.

R55 · 01/09/2022 19:56

Hello All

Im 40 and have been TTC for about 9 months now. I’m considering IVF with ARGC and wondered if anyone could shed any light on how they are and any recent pricing info? Additionally how long it took to get an appointment/ treatment? I heard there’s a waitlist?
Thsnks x

OrangeBengal · 01/09/2022 20:32

Hey @thislittlebird I’m glad you liked it and find it helpful, I almost cried on one of their earlier episodes where Ramona was saying no-one was listening to her about her spotting and that she just wanted to stop seeing blood in her knickers, I felt it. I’m thinking about where you are now and will continue listening.

Acupuncture was good, she was really nice. She gave me some general advice about making sure to eat three times a day, limited dairy and only warm, bland foods (the last one will be difficult). She also said we’ll focus on emotions alongside the acupuncture, which is probably needed.

She thinks me having had fibroids is probably at the heart of my issue and if I would have seen her earlier she said she would have advised trying naturally, which she thinks would have worked within 2 years.

She knows how old I am though and appreciates that that time has past. I’ll see her weekly (she put pins in my right leg, below the knee, then one each in my wrist, forehead, stomach and ear!). But she said the most important appointment will be on transfer day.

Welcome @R55, I’ve joined recently and this group has already been a great source of support. Unfortunately I can’t help with your query though.

Alexis7890 · 01/09/2022 20:35

@thislittlebird exactly!! He mentioned it 3 times…..all we can think is he was trying to be positive that 1 is achievable?! But talk about insensitive when 1 is nowhere on the horizon right now and he’d just said how this cycle was dysfunctional and scrap it as there’s no chance odds of these meds working not being great for me etc etc I was so cross with him for mentioning it once let alone 3 times!!

kerrym87 · 02/09/2022 16:02

@OrangeBengal it's worth trying a cooling pad for him and moving to cooler undies such as bamboo ones- hubby now wears one step and stops the sticky warm balls 🤣 with impryl, fenugreek and bud reducing alcohol and losing weight it improved his sperm alot.
I've been quiet as had 2nd failed ivf cycle June (caught covid and it ruined whole cycle so didn't even get to transfer) and its been so hard. All I can suggest is there's not many answers, allow yourself to feel angry, annoyed ,grieve etc let it out, access counselling if it helps, really helps me. I write shitty thoughts in a book just for that take each day at a time and try to plan nice little things for the week ahead. However, it being on my mind all the time and the crap between cycles that is this journey I'm still learning to deal with, really sympathise!

kerrym87 · 02/09/2022 16:17

@Alexis7890 I found people ask less than i think they will...was dreading family gathering where DIL just had successful 1st ivf and I thought they'd be all over the top wow great etc. It was barely mentioned apart from foods offered that were pregnancy safe. However, I just give short answers and look away and ot usually diverts. I work on a baby unit so I get asked that by parents alot as they're surprised I don't have kids but can't be too familiar so just say not yet and move convo on.
I also have inofolic alpha and they put me on metformin too just I'm case ( I'm a healthy weight and blood sugar ok but some studies say it may help) but I have pcos. My cycles are generally 30-39 days but issue is with maturation and quality of eggs for me so letrozole didn't help. It seems to help those who have irregular ovulation x

OrangeBengal · 02/09/2022 16:27

Thanks @kerrym87, that really helps and I’m so sorry your most recent transfer was cancelled, it happened to me for a different reason and it sucked big time as you’re ready to go and it’s hard to know where to direct the energy and emotions you’ve built up.

I started acupuncture yesterday and pretty much the first thing she said to me was ‘we’re going to work on your emotions’, so clearly some kind of counselling is needed, which I actually welcome now, I did consider the clinic counselling but for some reason never got close to taking it up.

I had a follow-up with my clinic today and they suggested options for my remaining embryos (ERA then endometrial scratch pre-transfer), but also said I might have a better chance with a fresh transfer. I’m mostly trying to ignore the possibility of another EC for now, but in prep, I’ve also suggested that my husband gets another frag test done and if it’s still bad, he cuts out the booze and coffee completely. I’ve also said he should do acupuncture as apparently this has been proven to help, I’m not sure if this relates to frag though, but I figure it’s worth a try and that he probably needs some counselling too. Will also throw in the cooling pads and bamboo underwear for extra luck!

Misty84 · 03/09/2022 06:36

@Alexis7890 I can totally see why your doctor banging on about a second baby is not helpful or relevant at all currently!! How infuriating.

@kerrym87 So sorry to hear about your recent cycle. It definitely takes time to process. I just had my second cycle with nothing to transfer again and it really sucks.
Such a build up and it all comes crashing down so quickly.

@OrangeBengal I’m glad your acupuncture went well. Why were you advised to eat bland foods?
Also trying to work on defrag here. Partner has swapped his boxers (I told him to do this about 2 years ago!!!) but he’ll never pay for acupuncture and he has always refused to speak to a counsellor. He is going to see Dr Ramsay next month though, so if there’s any useful words of wisdom I’ll pass them on to you.

Hi @R55, as far as I know AGRC is the most expensive of the private clinics because they monitor you extensively. No idea about wait times though.

OrangeBengal · 03/09/2022 09:40

That’d be great, thanks @Misty84. The bland food and limited dairy is because she thinks I may still some healing to do from my surgery and in Chinese medicine the uterus is associated with the spleen and treating the spleen means this kind of diet and apparently cold foods are never recommended anyway. As I eat a lot of cold foods, I’ve decided where I can’t cut them out I’ll drink a warm / hot drink alongside them (this was mentioned in relation to desserts on a talk with a separate acupuncturist, so I figure it’s ok in general).

Hoping43 · 03/09/2022 21:16

@Alexis7890 sorry to hear you are struggling with letrozole. I think I’ve spoken to you about it before. I ended up having a 50 day cycle on 2.5mg and now I’m on 5mg and day 12 and I don’t think it’s worked again, I have no ovulation signs and I can just tell it’s been a failure. I don’t think I’m going to waste any more time or energy on it. I haven’t had a normal cycle since June because of letrozole and I ovulate on my own anyway, it’s made everything worse. I am worried about why I’m not responding to it. It makes me feel like my eggs must be totally useless. I’m going to go for IVF once I get this cycle out of the way. But I wanted to TTC for 18 months first and that hasn’t really happened because of the letrozole disaster wasting time. It’s been about 16 months but I’m 36 at Xmas, my boys are getting older and quite frankly TTC is ruining my life at the moment. I’m so sick of it. I need to try what I can, draw a line under it and move on and I can’t do that until we’ve tried IVF

thislittlebird · 04/09/2022 20:30

@OrangeBengal I messaged her on instagram to say how much I'd related to her podcast, she was very sweet in response too. What episode was that? I don't spot, but I am so very tired of seeing blood once per month for 4 days or so. There's never an end, I haven't even got to my FET test day once yet, I always know it's failed because I bleed or get a migraine.

Glad you enjoyed acupuncture. It's more like therapy for me really, and has been more like that than my actual therapy was. My woman did a transfer day "prescription" of points, not that it worked for me but I might go again if we have the money.

@R55 I'm no help either sorry, but feel free to join the thread.

@Alexis7890 three times! Wow what a very annoying thing to do!

@kerrym87 the shitty thoughts diary is probably not a bad idea!

@Misty84 I think bland foods would finish me off 😂. Have you seen Ramsay before? I can't recall.

Misty84 · 04/09/2022 21:27

Haha me too @thislittlebird !!!

No we saw another guy before, not the famous Ramsay. You’ve seen him right? Worth it? 🤨 More expense obvs…

OrangeBengal · 05/09/2022 11:13

Morning all! Really nice that she came back to you @thislittlebird. Umm, episode-wise I reckon somewhere between episode 7 and 9 for the spotting. Fortunately I don’t spot either, but the whole doctors not listening to you I empathised with re heavy bleeding / fibroids and the fact I must have had them for a significant number of years without the doctors investigating.

Personally I hate POAS, I would much rather my period just come. I’d convinced myself the last cycle had worked, but painful cramps the day of my period / the day I decided to test told me it hadn’t and although I was upset all night, I was also grateful for the heads-up my body gave me. But I get that for you it’s a milestone you haven’t been able to reach.

thislittlebird · 05/09/2022 22:27

@Misty84 it’s difficult because I guess it was worth it, after some (expensive) tests he “cleared” us to start ICSI as such and we have made embryos. So in that sense I guess he was right? It’s just hard not to wonder if it would be the same with another guy! Nonetheless I think I’d definitely get his opinion at least in your scenario. Worth a chat in case he finds something or wants to try something else.

@OrangeBengal the doctors who don’t listen thing is very annoying. I would like more answers to my hormone issues and my immune issues really but they just plough on.

I also hate POAS. Gives me nightmares. I might have to do it a bit earlier for the next transfer though, to check for chemicals.

I just went to another thread on infertility and people in there talking about twin and triplet ivf outcomes scared the shit out of me. I’m having a double transfer after much deliberation and now I’m panicking it’s the wrong choice. The thing is, I don’t think the odds of them sticking are very high so I don’t see that our risk is high of twins or more, but now I’m stressed out.

OrangeBengal · 06/09/2022 08:20

Morning all. @thislittlebird I think going for two is sensible in your case, it’s something you haven’t tried and as you’re prepared to go again there is no waste there, just an additional chance. I’ve only ever wanted one child, but maybe like you after all this time of it not working the very very slim chance of two seems worthwhile to get your family. Stay of the the multiple boards for now though :)

I can’t remember if I asked you before, but have you tried an endometrial scratch (done at the start of a cycle) and / embryo glue. The former has been recommended to me as a next step by my clinic (can apparently be done alongside the ERA), embryo glue I need to ask about. The other thing is PGS testing, just super conscious of this after listening to FCOL season 2, they have a specific episode on this. My 4BB embryo survived the thaw, biopsy and was successfully refrozen yesterday, so it seems possible to test successfully after initial freezing. Would you consider this? It’d provide more data and maybe help with your decision on whether to put two back.

thislittlebird · 06/09/2022 12:59

@OrangeBengal yeah one would be fine with us too, we never planned for lots just sort of tried and waited to see what happened.

I think my fear of transferring one is that one of the two won’t survive the thaw and I don’t want to pay them for an attempt where I don’t get to transfer, if I can help it.

No, not tried those. Because we’re nhs there’s really nothing like that offered. Although I won’t lie, I’m very cynical about all these extras and add ons. Not that I won’t try them, but I can’t help be dubious about them. The testing I’m in two minds about too, because I know the research on it is mixed. I don’t want to end up with no embryos left if we test them. I think we’d need to get quite a few for me to be bold enough to do it.

OrangeBengal · 06/09/2022 14:13

I completely hear you re testing add-ons, was just thinking if you’re ruling things these are things to consider @thislittlebird. Also I was very surprised re the episode of FCOL, as their data seemed pretty obviously and made me wonder why PGS wasn’t therefore an automatic green on the add-on list! (Sorry for being mysterious, don’t want to spoil the episode for anyone listening.)

Misty84 · 06/09/2022 20:38

Had a very depressing follow up consultation with the Lister. In a nutshell that’s our IVF journey over, including donor eggs/sperm. Not worth saving the money up because the odds are SO poor. I’m done with it.
Can only continue to try and improve the sperm and pray for a natural miracle.

Feeling so glum and despondent. There’s just no words for this shit anymore!

Then in the programme we were watching there was a whole giving birth scene🙄 My partner and I skipped it. Couldn’t watch that.

On a separate note, just saw this on Instagram and thought of you @thislittlebirdif you’re still thinking about a pup. Although I’m sure you’ve done your own research! Photo attached x

Bus 9 - Donkey Cart departing soon, all aboard with ivf, pcos, endo, sub/unexplained fertility jump on
Sunbird24 · 06/09/2022 20:42

I’m so sorry @Misty84 💐

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