Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@VenusStarr you seem to have done all the text book things :( did the clinic give a reason as to why it could have shrunk?
I know it so tough especially when you do everything possible. Xx

@VenusStarr most of these things were in my notes. There were a few additional suggestions:

• 20g flaxseed powder each day (I have this in a smoothie)
• Rooibos tea, one cup a day
• Fennel tea, one cup a day
• Evening primrose, borage or starflower oil, two a day from day 1 to day 14, then one a day from day 14 to end of cycle. Try BioCare Mega EPA but stop after egg collection or before FET.

She also suggested a Beet It shot per day and said Vitamin E can be helpful but to stop if prescribed Clexane/Heparin, and to reduce to one a day if prescribed aspirin. She recommended Cytoplan Tocopherols and Tocotrienols at 2 a day (one am and one pm).

I don’t want to add to the overwhelm but thought I’d share in case it’s helpful 💛

Thanks @Amy00 🙂

@HoldingOn2Hope beetroot juice? Wow I never thought of drinking that. I will need to try that and see if it helps in my situation. Does it taste any good? 😬. I think you are right about meds causing issues with lining as I didn't have this problem before. I have been thinking at my next appointment to mention if all these drugs are causing issues as I have not been on this many drugs before and been successful in getting pregnant many times. How can it be I can't get pregnant even once in the last 7 months.

@VenusStarr "the teary discussion" was really sad to read. It made me all teary 😪. If you don't mind me asking how long have you been on IVF journey?

@Sezmarelda1 We have also had discussions about if I miscarry this time then we will give it up but then like you said I don't think I will be able to accept that when it's something I want so badly😔. We had a budget and we have used it all but still going for treatment as I don't want to waste time or miss an opportunity. It's such a difficult situation to be in.

As for the hair loss, I have had blood tests done and the GP said everything is fine , thyroid and hormones no issues so I asked them what's next bcos there is obviously an issue. They just told me to speak to endocrine dept which doesn't make sense if everything is fine 🤷🏽‍♀️. Anyway I have an appointment with them next month so I will mention it and see what they say.

@MyEasterEggs intralipids for me are around day 8-11 of my cycle.

@Amy00 thanks Amy I hope it does flush me out and get me pregnant 🤞🏼. Wow 5 hours, whereabouts do you live? We live an hour away one way (if there is no traffic)
from Epsom which still is a faff so if we decide to go down the IVF route then hopefully if will be somewhere local. I didn't realise it was that expensive but yes I understand where you are coming from. I have already spent 6k and had 6 cycles and not even pregnant once🙄. It's just so frustrating. Can I ask how long does the IVF process take from 1st visit to actually implantation etc? And how has the process been for you physically and mentally? Is it painful? Stressful? I'm feeling so anxious right now as it is.

@VenusStarr oh my goodness you have tried everything. And still lining was not thick enough. This must be so frustrating for you too. Thinking of you xx

I know this is very hard for everyone and I really hope there is good news soon for us all 🤞🏼

@MyEasterEggs which nutrionist did you see? I saw Mel Brown and my list is similar to yours x

Hi guys, I’m 41. Trying for #2 with ivf after back to back early losses first months of trying then nothing for over a year.
my first appointment with Dr Shehata is in September. I’m with Create. It’s been ok with them so far.

@HoldingOn2Hope I see Anna who works with Mel. I was too impatient to go on Mel’s waiting list 😆

I’ve had a few appointments with her and have liked the hand holding throughout. My plan is pretty customised as they all are but I’ve found the general handouts really helpful too. If only to prove I’m not going mad when it comes to all the It Starts With The Egg type stuff.

Hopefully we’ll chat again September/October after a positive pregnancy test 🤞🏻

Hi, we are currently awaiting our results from dr s clinic. I just wondered, I had it in my mind that if I do get pregnant travelling 3.5 hours (7 hours round trip) every 2 week would be bearable but will I be expected to have the intralipids before ovulation each cycle? I just can’t see this being logistically feasible! We have only been to Epsom once and it was such a long awful drive with loads of traffic. Do people generally go with their partners? I feel like saying I’ll go alone as it’s a waste of a day us both going and my husband wouldn’t even be able to get loads of time off work. But I’m not sure driving is a good idea afterwards and I’m not used to long distance driving. I just wish there was somewhere more local I could go without going down the ivf route x

Ps meant to say extremely concerned about not being able to fall pregnant on the meds, we do fall pregnant easily but miscarry every time and obviously wouldn’t risk just carrying on as normal but feel like I’m going to end up in an even worse position and thousands of pounds worse off as well!

Hi @Ralowi good luck for your results- when is your appointment?
I live 3 hours away from the clinic and so it's a full day out to go down. My protocol is ovulation intralipids and my cycles are short, so I was travelling down even 3 weeks at one point.
It's really difficult to know how it'll affect you. We haven't had a natural pregnancy since July 2020. Whether it's the meds, I don't know as our first pregnancy took 16 cycles, so we have struggled in the past. But there does seem to be a link for me because number 2,3 and 4 were all conceived within 2-3 cycles.

I think I am in the minority, but we are a lot of money down and 2 more losses in, so falling into the unfortunate 20% category 😔 but I genuinely don't think that's typical of Dr S's patients. My situation just seems to get more complex. Try not to worry x

Morning everyone

So I thought I'd update everyone with my appointment yesterday.

Well it was horrific. I felt quite traumatised after. I had the procedure where they put dye in your tubes. Dr Edge couldn't get the tube in, it kept popping out and they tried like 5 times but obviously each time you take it in and out of your womb you have to be mindful that it could cause an infection. In the end they gave me a local anaesthetic which I wasn't expecting either.
After all that it turned out that my tubes were fine! There was blood everywhere which I was not expecting either. I think my husband was quite shocked by it all too 😩.

With regards to my superovulation scan, my Letrozole had been upped to 10mg for this cycle from 5mg. This didn't really help at all as I still only ended up with 1 follicle 🤷🏽‍♀️ I have absolutely no idea what is going on. I started this plan 7 months ago and was having a good response with 4 or 5 follicles but only 1 since last month?? The conclusion to my appointment was that I try Gonal-F injections?? Anyone heard of these? 🤷🏽‍♀️ they are so expensive on top of GCSF and other medication I'm on. The other option I was given was IVF. I didn't really know how to take this information and ended up in tears. I just felt like it became all too much in the one appointment. I dont think I was ready to hear about the IVF route as I know nothing about it and it kind of confirmed there's nothing they can do for now. I don't understand why I no longer am getting pregnant? What is the issue? They even said majority of their patients get pregnant within 6 months of super ovulation cycles.

After this it was intralipids time and they couldn't get the needle in. Eventually they had to put it through my hand which was painful. Again I got teary not because of the pain just in general I just felt really down and low and basically spent all day very upset at the thought of even talking about it.

We have decided to have a break if we do not fall pregnant in this cycle. But I have to think about what to do as I am 41 and even Dr Edge said time is not on my side so will need to think about where to go from here.

Has anyone actually managed to see Dr S? I only saw him at my first appointment but since then he's always on holiday when I try to book appointment to see him. I'm just thinking maybe I need to see him to get second opinion as to what is going on? 😔

Just feel so deflated and down😞

Oh @Sophi81 ❤️ that all sounds really traumatic. I'm sorry.

Did they give you any antibiotics just in case?

I'm starting to wonder if letrozole isn't all that. In my first superovulation, I was a slow responder and my lining wasn't great, once we added estrogen I got 3 good follicles but a bfn. We did do ivf in between. But I did superovulation in May again and it was awful. Eventually got one lone follicle. Dr Edge said she'd want me on 10mg if I ever do it again but I'm not keen on that. Like you say, we're on a tonne of meds anyway.

I had a disaster with intralipids last time too, they do usually go in my hand anyway. It is so painful. Last time they tried about 7 times and at one point said they might have to try my foot 🥺

Try messaging Lorna to see if you can see Dr S. I do think he's definitely taking a step back. I only used to see him, but since May, its been Dr E.

Sending a big hug, it sounds like a really difficult day and with ivf added in the mix when you weren't expecting it, itsvery overwhelming. I'm glad your husband was with you xx 💗

@VenusStarr
Yes they gave me antibiotics but I was so sore and mentally don't think I was ready for this. I have had similar procedure before in hospital called HSG back in 2018 and I don't remember it being like this. I did mention it to Dr Edge but she said HyFoSy is not painful as HSG but this was defo more horrific.

Sorry but what does bfn mean?

I agree with you, I don't understand superovulation! It's defo not superovulation if we only getting 1 follicle 🤷🏽‍♀️

7 times? Woah that must have very painful. Sorry to hear that 😔.

I will see if we get pregnant this month if not then I will email Lorna to get us an appointment with Dr S. To be honest my husband said the same thing about Dr S taking a step back and is not happy that last time we saw him was in March. We do feel like situations like this we should be referred back to him to see if there's anything that he can help with especially since we did have 1 success with him.

I asked Dr Edge what is IVF like is it quite painful / invasive? She said it's not really painful but they would want loads more follicles like 20 rather than the 5 at this clinic. And loads more meds? I'm thinking I'm already on so many 😩. Plus she said they put u to sleep to retrieve eggs etc. I just didn't like the sound of it all. Was definitely overwhelming.

@VenusStarr thank you for the hugs! Sending lots of love back xxx

@Sophi81 bfn is negative, sorry!

Ivf isn't too bad. Just to say though, 20 eggs is not really that common unless you have pcos. And even then, not all of those eggs will be good quality. And it puts you at high risk of complications of overstimulation. My amh is low, so I did a milder ivf with lower dose meds and we still got 3 top quality blastocysts (embryos that are 5 days old).

Dr Jan is their ivf specialist, so if you are thinking about it in the future, I'd see him. We are doing ivf at a clinic closer round home though. Don't feel you have to do it there (unless you want to of course).

Ivf meds are ones that stimulate your follicles, so you would inject daily, take another injection to stop you ovulating early. You take a trigger (like superovulation), that has to be exactly 36 hours before they do egg collection. You will be sedated and the take the eggs out of the follicles and either mix with sperm - that's standard ivf, I did that or something called icsi where they choose a sperm to inject directly into the egg. Then they watch them over 5 days. You ideally have one put back in your uterus then, but they sometimes do earlier day 2/3 transfers. It's a bit complicated but they'll explain it during and you can always ask here or message me and I can try to help. I'm no way an ivf expert but I have some experience.

It is overwhelming but I quite liked that the ivf clinic took control, they tell you when to do meds etc and I just had to make sure I did as I was told. It was less stressful for me than timed sex. Xxx

@VenusStarr thank you 🙂

They did say to me there would be a discount if we went with them as I did the superovulation but I'm not sure if it would be cheaper just to do it somewhere more local as the drive is a killer as well as booking time off from work. Plus Dr Edge mentioned the IVF treatment happens in Kings hospital which I'm not sure where that is but I'm guessing it's not local to me.

I have asked them to email me information regarding IVF and costs so I can just read up on it and get some idea of it all.

I do have PCOS so not sure if that
complicates things 😞. I think if I did go for ivf I would want to do a milder version too just so tired with it all. I did Google some IVF clinics but I noticed they don't really treat you unless you are under 39 so not sure if I've missed that boat there too 😩

Wow can't believe you have been through so much.how many rounds of IVF have you had and what are they saying about the next steps?

I agree with the timed intercourse being stressful!!! I have got to the stage that I absolutely hate it and find it like a chore. And with my husband working long hours I never know where to fit it in.

I just feel like I should keep trying but then at the same time I think should I stop putting my body through this and just try and enjoy life. But I don't want to miss the boat completely and then regret that I didn't try for longer. I just hate being in this situation 😩

@Sophi81 I think they do scans and monitoring at crp and egg collection and transfer at Kings. But not sure where that is.

With pcos you are at a higher risk of developing ohss (ovarian hyper stimulation syndrome). So if you collected more than 20 eggs, they'd say to do a frozen embryo transfer to give you time to recover. I think you basically get too much fluid build up and it's very uncomfortable.

I'm with Create and they see older women and ones with low amh, so only do milder ivf. I have only done one cycle. We did a fresh transfer but I had a chemical (I think that was a progesterone issue as I bled a lot then tested positive). And I've done one frozen embryo transfer which was last October. That was a MMC and the baby was healthy. Dr S added gcsf. We have one embryo left but my transfer was cancelled last month. So I'll try again when my period arrives. I seem to have stopped responding to meds.

Dr S didn't know why the protocol didn't work 😕

I'm having more thoughts about walking away from it but not quite ready yet. It just completely takes over xx

@Sophi81 the timeline for ivf for us was we applied to the clinic right at the end march, there was about a 4 week wait for the consultant appointment but then I was able to start the protocol on my next cycle which was 18 May. They have different protocols, mine was to go on the pill for a month to reset everything, northisterone for 10 days then started stims for 10 days, egg collection, transfer 5 days later. All in all from 31 March to positive pregnancy test on 16 July that was about 15 weeks.

I actually felt like it was some relief to have them in charge of it all rather than it all being on us to DTD at the right times etc. The injections were fine after I did the first one and got over the mental block of stabbing myself! I was in some physical discomfort for about 2-3 days each side of egg collection as your ovaries get really swollen up growing the delicious eggs. It is an emotional rollercoaster once they collect the eggs as there is a huge drop off rate to get to blastocyst stage which is what you need for a 5 day embryo transfer and I got upset a few times but it only takes one. So yes it is a bit painful but I found it totally manageable, only needed to take paracetamol on the day of egg collection. Yes it is stressful as you are cramming in maybe 12 months of trying into the process and there is a lot riding on it. I will do it again though for sure if this doesn't work.

Just read your next post - gosh that sounds awful!! At least your tubes are clear but what a palava. I was at the clinic as well yesterday in the afternoon. Gonal-f is the same drug I was on for ivf stims, I was on 125-150 dosage for 10 days. I grew 16 follicles but only 5 of them had an egg in when they went in to get them (which I was really upset about and I cried in the recovery room but didn't matter as we got the bfp) They are mega pricey injections! Did you have michaela doing your intralipids yesterday? She messed mine up a bit and blood went everywhere 🤢 which had never happened before and my arm is sore today. I haven't seen DrS for ages, same as you just been told he is on holiday or travelling for conferences. Have a read about the IVF process on the NHS website, and maybe take a look at Access Fertility for finance package options. It is a lot to take in but once you get going I found it was all very positive as felt like we were actually doing something.

Has your OH had a normal sperm test done? We did DNA fragmentation with DrS which came back borderline high but didn't bother doing the normal count/motility/morphology test done as it wasn't suggested and we were conceiving quickly before. Then we did the normal test (locally) and turned out he has slightly lowered numbers on that now, which can change over time as they make them every 3 months, but lower count etc can reduce chances of conceiving. He has been on impryl for c9 months which hadn't made a difference. We ended up doing IVF ICSI because of this which gave us a higher fertilisation rate but costs more than conventional IVF.

@Ralowi yep I went for intralipids every month for 7 months "just in case" (then did ivf). It was a full day of travel for me as well, a right pain and in hindsight a waste of time as I never got pregnant those months but you can't know that in advance!

@VenusStarr your foot!!! 😱 I hope they don't ever have to do that!!

@VenusStarr this pcos doesn't help does it 😩 I checked create but doesn't look like there is any local to me. Dr Edge checked my notes and said AMH was good (whatever that means) when they tested in feb. GCSF is so expensive! Do you have to do it every 3 days once pregnant? I don't even know if it works 🤷🏽‍♀️. I've used it 4 times so far at ovulation stage. I have 1 left for this months cycle. I am just so scared now that nothing serious happens with all this trying and all these meds! Sorry to hear about ur MMC and chemical that is just awful to have at this stage 😞. I really hope it all goes well at your next transfer fingers crossed. I am a little confused though as you are doing IVF with Create but are still with Dr S? Have you got 2 different treatment plans going on?

If Dr S didn't know why the protocol didn't work
is that why he added GCSF? He added GCSF to my plan because I stopped taking hydroxy due to my hair loss.

@Amy00 wow Amy that's a lot of info to take in but thank you for explaining it to me.
You are the second person to say that you prefer them to plan everything rather than stress about timed intercourse. Problem is I don't think my husband would want to go down the IVF route. It's something he doesn't really know anything about so that's another challenge I will most likely face. 15 weeks doesn't seem so bad if you have got the process started which we are no where near. I just hope I get pregnant in this cycle although both my husband and I said

we not very hopeful about it 😬. Lol @ delicious eggs 😂! Yes I had Michaela yesterday with the intralipids! I I left around 12.30, was so upset about the whole thing my hand still hurts too! She tried so many times with me too!

I don't understand how Dr Edge is managing all the patients if Dr S isn't around any more? I understand he has other places to attend but I do think he should be making more time to see some patients where things are not straightforward especially all the money we are paying.

My husband did DNA frag when we went first time 2 years ago and his sperm "needed work" so they put him on inpryl and said not to try for 3 months. They did another DNA frag 3 months later and said it was great good to go and that month I fell pregnant and with great difficulty we had our first child. This time they said there is no need as it was fine last time? 🤷🏽‍♀️ although Dr Edge has now asked husband to do semen test with GP but he's not had time to do it.
Also wanted to ask same question @Amy00 are you doing IVF through Dr S? Or have you got another plan with them?

@Sophi81 no worries about the info - that's what these boards are for - info and support 😊 Neither me or my OH ever thought we would end up doing IVF but actually I think it's been the best thing for us. Obviously I would say that as it's been successful first time and I am well aware we have been incredibly lucky in that respect. Now at least we can test the immune protocol. 15 weeks was from enquiring initially with the clinic so it shouldn't be that much different for you but will depend on the clinic's availability for the initial consultation and which protocol they decide for you.

It might be worth chatting with your OH about the sperm test? It cost us £265 to do locally (test and consultation) and probably saved us a lot of time as we were thinking SO would be the next step for us but with his numbers they advised IVF ICSI. If you can get it done via GP even better (although you may have to wait a bit longer for the results - private we got them back within 2 days, he did end up doing another test via GP and results took 3 weeks after lots of chasing).

It's great that you already have a child - it must give you a lot of confidence in the protocol - just need that elusive BFP!!!!

We are doing IVF at a different clinic locally 20 mins away as couldn't face trekking down to Epsom even more than we already do - that would certainly have added to the stress for me as it's such a long day travelling. Both clinics are aware of each other's treatment plans and are fine with it. The IVF clinic actually said they would normally have prescribed the steroids and intralipids I get via CRP but they can't do it at the moment because of COVID and it's apparently not their choice but HFEA which is the IVF governing body you have to sign loads of forms with. I bloody wish they would do the intralipids locally as it would save soooooo much time!!!

Anyway hopefully you won't need any of this as this will be your month 🤞🤞 xx

@Sophi81 I thought it might be helpful to share as I’ve done 6 rounds of IVF at CRP after 6 months of SuperO. I actually really enjoyed the IVF as there was something productive to do every day, also it happens so quickly, 12 days of stims and I was at egg collection point. You do scans around every other day at CRP with Dr Jan (who is so nice!) and then when the time is right you go to Kings Fertility in Camberwell for egg collection and then back to Kings 5 days later for transfer. Kings is this amazing modern futuristic building and everyone is no nice there.
I’m local to Epsom so it was most convenient that way. After so long I found it a relief to not have the pressure of having timed sex every month. Also I genetically tested the embryos so that’s been nice to know that’s unlikely the cause of miscarriages and I knew it was likely this baby was healthy.
I have now spent £66k but currently 13 weeks pregnant. Any questions let me know x

@VenusStarr I hope you’re next cycle comes around soon xx

Hi,

I’m just about to do my first round of superovulation at the CRP. I’ve started taking letrozole. Can anyone explain the next steps please? I’m booked in for a scan. What exactly do they look for? And what happens with the trigger shot? Feel like this all should have been explained by the clinic.

Thanks so much xx

@VenusStarr its on Friday via zoom. I feel like he puts everyone on the ovulation intralipids. I can’t help thinking they are a bit unnecessary but what do I know lol. Just that this is the most expensive thing apart from the initial bloods so can’t help being a bit dubious that it’s a bit financially motivated their end. There has been the odd month we haven’t fallen pregnant but there definitely seems to be something in the treatment plan that seems to stop people conceiving as easily. I just couldn’t bear the thought of all the travel and money for it to take months to actually get pregnant. Thank you for your reassurance and sorry that you seem to be in the minority. I suppose I will get into the routine of it like you and others on here, don’t want to seem negative when I’ve not even started the process but just the worry that eventually we may give up and have gone through it all for nothing. I think the problem is I am reading this forum and seeing all the hard times people are facing when the reality is all the people who have been successful are no longer here so just need to remind myself of that and the 80% success rate. I hope this 80% figure is accurate anyway!! X

@Amy00 i am so tempted to say no to the intralipids but I’m sure there will be some reason or another that I need them!! I feel like relocating to Epsom

Good to hear from you @StillTrying10000 ❤️

@ForestThrills they'll be looking for you to have a few follicles of a decent size. Mine has never gone to plan, buy ideally if you're being scanned around day 11, you'll have a couple that are dominant and they'll prescribe the trigger to take at a certain time and tell you when to have sex. They also look at your lining, above 7mm triple layer is good. They'll tell you when to start your meds too and you'll have ovulation intralipids if they're part of your plan. What dose of letrozole are you on?

@Ralowi will they send your results in advance as you're having a zoom appointment?

@Sophi81 the gcsf confuses me a bit, but once at 6dpo and then from positive every 3 days until 10 weeks. And you have to have your bloods done every 2 weeks too. Got stung with that at clinic last time.
Dr Shehata is doing all my immunes and Create are doing the ivf side of things. They are open to the immune protocol and follow what Dr S has in my plan. To be honest, they do seem a bit out of their depth on the recurrent losses, so I think they're happier knowing I'm under him. Not all ivf clinics are OK with immune protocols though.

@VenusStarr oh I don’t know, should they? You’ve just reminded me to pay for the appointment haha so I’ll ask