Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

That's good news @Sophi81 ❤️

How are you @StillTrying10000?

How are you today @myrainbowjourney I'm sorry you had spotting. The testing part of the process is the worst. If you're using frer, I'd be cautiously hopeful if you had a faint line. It's so, so hard. Your emotions are up and down constantly and that's exhausting.
Your work trip opportunity sounds like a great opportunity, I'd definitely allow yourself space to think about it.
I'm not really sure how I am feeling at the moment, I think I'm numb. I've not cried since I found out. I think I've had so much bad news, that it doesn't surprise me.

Yes, it's the hysteroscopy date @taffeta00 I've spoken to a couple of other women who've seen Mr Jan for scarring and he's recommended they have two 🙄 so five grand if I need 2 as well. Feels like monopoly money.

I'm sorry you're feeling this way, it's very valid. This journey is tough. I do still believe he can get me there, but I don't know how much longer I can continue on this path.
Having been in the infertilty world for 3 years, a lot of fertility treatment doesn't actually work and I do think pregnancy is down to luck. Everything can be perfectly timed and only 1 woman in 4 will get pregnant. It's depressing. It does worry me with all the drugs I've been on, but I've seen lots of other women have success with the meds in my protocol. My concern is my case its increasingly more complex and the standard protocols aren't working either so I need to add more. It's definitely a leap of faith.

Xx

@Sophi81 that's great news. Fingers crossed for you xx

@taffeta00 I wonder this sometimes. I can't understand why it's not working. I appreciate there is some luck involved. Even if all the stars align, we still need to then beat the odds of actually getting pregnant, but I just feel like it's pretty hopeless now. At the start I really felt confident it was only a matter of time, and that's sort of draining away.

I think I will book it, because I'll deal with the what if if it actually happened. But otherwise I can see myself another year along, nowhere further forwards and I've said no to doing anything.

@VenusStarr I'm ok thanks. It was definitely AF, I woke up to much heavier flow. It's rubbish, I'm sure there was a line, though I'd quite like a line to be unquestionable, not holding it up against all backgrounds and against the light etc, willing myself to see something.

As I said above, I think if the trip goes ahead, I'm going to book it. And see where I'm at at the time. I can't keep planning things (or not) on the basis of in case. I'm going to end up looking back thinking what a waste of time.

Like you said, I do think we can get there with the protocol, I just don't know how much more I can take of it. It feels endless at the moment, no real glimmers of hope that it's around the corner. This last cycle was perfect - the right side, 2 follicles etc. and here I am with another period. It sucks!

I know how you feel when you say you don't know how you're feeling. Comes a point where it's just background noise.

At least the sun is shining today.

Sending positive wishes to everyone xxx

I'm sorry to hear its your period early @myrainbowjourney have you stopped all the meds now? Its fucking shit. Sending you a hug 💕
Are you taking a break this next cycle, or are you doing superovulation again?

I've been for a long walk today, the sun has definitely helped. I'm going to have a glass of wine tonight, sod it.

Sending lots of love to everyone xxx

@VenusStarr it's really shit. I stopped the meds a few days ago. I had not a lot of hope in the faint line.

Yeah I'm taking a break this next cycle. He still wants me to have intralipids and as it turns out, is happy for me to try naturally or with super ov, but think I'll go it alone for the month. Shame I have to go in at all, sort of tempted to not do anything, but will be Sod's law it'll be the month and I'll have had no treatment at all.
We were thinking of doing dna frag tests during the break, but reading it it's about recurrent loss, which I know we have had, but now we aren't even falling pregnant. I wonder what to do for the best. What do you think about the dna frag test?

Think I might have a glass of something too. I feel myself wanting to deviate from everything at the moment. What's the point?

Haha what a lovely positive attitude I have 😂

Your long walk sounds lovely. Lots to be said for the sunshine. We went for a walk round a local town and stopped for coffee and cake. Just a little break from the normal cycle really helps xxx

Little breaks definitely help. Coffee and cake sound good, my dh is on a long shift today, but he's off tomorrow and I'm hoping we'll do similar 🙂

The dna frag is a strange one. I know it's linked to recurrent loss but I don't know why - as in why if we're losing a healthy baby, how do they know its a sperm dna issue?? When we first met Dr S he said we needn't do it and our ivf clinic was the same. He's since said to look into it and I guess, ruling it out is good. But I know a lot is lifestyle. We'll likely get it done if our next transfer fails. I mean, I guess if you're on a break, it might be a good time to do it? I've not helped you! Sorry 😂

I know what you mean about not trying and that's the month. My dh was telling me about a guy at his work who has poor sperm issues, tried ivf 3 times, all bfn and now they're pregnant, no intervention 🤷🏻‍♀️ I also know of women who've had immune issues, but for following pregnancies not had any meds, or had recurrent losses, no treatments and carried to term. It's all a bit of a mindfuck. Apologies, my language is terrible today!
I do kind of think that trying without meds might not be a bad thing and starting them as soon as you get a positive. As Dr S reminded me when I went on pred, the meds won't help you get pregnant. And I do wonder if they can sometimes hinder getting pregnant, but that's just musings, I have zero evidence. But I do know I've not conceived naturally since starting on the protocol and prior to that, I'd had 4 natural conceptions.

Enjoy your glass of something tonight xxx

@VenusStarr you know, that is really interesting. I had no real issue falling before and now nothing. I wonder if there is something to that. But then he has so much success on it. I need to decide about the intralipids. I probably couldn't live with myself if it happened and went wrong and I hadn't had them.

Don't worry about language - it's all absolute shite!

xxx

@taffeta00 I was really wondering how many people have success under Dr S when it feels we're all struggling but I have to say over the last year visiting the clinic, ever other day at some points for IVF scans, I have seen so many women who are pregnant under their protocols. I felt like I was the only one getting left behind. Then as I got more friendly with the staff I started to ask and we really are the exception rather than the rule. So many women do have success with them. And they honestly want to help me get my baby so much. I think it's just that those women who have fast success never need to turn to these forums. Maybe I'm being naive but I hope we are the few who haven't had any luck yet and I really hope we get there.
I do agree it's might be something to try to just start the drugs one we get a BFP as I've struggled to fall pregnant when I was getting pregnant right away before.

@VenusStarr @myrainbowjourney I found this podcast interesting about DNA frag podcasts.apple.com/gb/podcast/the-fertility-method-connecting-you-with/id1613615538?i=1000554696236

I've not been very well on the Tacrolimus but I have been getting better. My result on Wednesday was 10 when it needs to be 4-8 so they've dropped my dose (thanks for Dr S taking emails whilsts in Italy!) so I'm back for another test on Tuesday. Really hoping my levels are right then so I can start relaxing that they'll let me transfer in my next cycle.
I didn't expect to ovulate this month as I rarely do naturally now but somehow I've magically had a positive ovulation test which I've only had twice in my life before! Wouldn't it just be magical if I conceived naturally thanks to this wonder drug  Always hopeful ha!

I hope the rest of you are doing okay xxx

Thanks @StillTrying10000 for the info. I’m still not convinced and find it strange so many of us have struggled more to conceive on the drugs than off them. Also the clinic can ‘say’ they have a high success rate but I’ve seen no evidence. We just hand over our cash as we are so desperate for an answer.
I’m now doing the I v f with another clinic and praying for some success for me, as I am for you all too. It’s utter utter rubbish all round - enjoy those glasses of wine - I’ve not drunk for so long I’d prob pass out!!! xx

@taffeta00 I agree. I just feel like whenever I'm there there are always women having intralipids talking about their pregnancy symptoms or sat in the waiting room looking at their scan photo excitingly discussing their babies measurements with their partners. I'm always thinking when will it be my turn. Also a gripe I have- at the NHS EPU you're told to keep scan photos away until you leave the clinic but they mustn't say that at CRP as I always find it distasteful that couples come out of their scans all giddy looking and discussing the scan pictures. Maybe that's what they want - to show the women who haven't had success that it's possible. xxx

@StillTrying10000 I do agree, I often see people in there who are pregnant and it does give me hope. I also sit and wish it was me, wonder when it will be - if ever.
I must say I've not seen people with photos, but have got the feeling they are talking about the scan. It's so difficult to see, but like I said, gives some hope at least.

@taffeta00 I totally understand how you are feeling, and I am with you with a lot of it as I said. However I also do think what @StillTrying10000 said is right - they won't be on the forums! Please don't lose all hope. Everything crossed for your ivf

xxx

Thank you both. I may be hormonal and cynical, which I’m not usually, but I like to see facts and I’ve not seen or heard anything positive about CRP for months and I’m worried I’ve wasted 6 precious months critical at my age. AF came early so it’s full go with the injections tmrw, scarily.
I meant to ask - has anyone found that AF comes early since they’ve been on the super ov prog?? Mine has been day 24-26 instead of 28-30 since I’ve been on it xx

Hi everyone, I haven't written here for a while, but I do check in every now and then. I thought I'll write a couple of lines to give you hope. I was with Mr S for over 2 years until my successful pregnancy happened aged 44 following 5 losses. My miracle is sleeping upstairs whilst I type this. I did superovulation for a year (having tried naturally for a while) and got pregnant 3 times within that year (I lost 2 for different reasons, it wasn't due to treatment not working). Having said that, Letrozole only did not work for me, but Gonal f injections combined with oral Letrozole very much did. Gonal f is an ivf drug, but you inject smaller doses and only for 5-6 days with superovulation . I never took Pred, but Hydroxy (until delivery) and GCSF injections (until 10 weeks). I remember the dark times too well, and my fears when I looked at my age... Please do not lose hope!!

@taffeta00 @VenusStarr just a quick note to say that I had a very quick success on the programme first time around. I actually fall pregnant first month of trying. (Not the same this time). However I have to say that I was told by some other ladies that the meds do hinder the chances slightly. I hope this is somewhat hopeful. I am trying to remember it myself 😬

@Sophi81 fantastic news!

@Tgrf55 on the pred and weight front, I had zero side effects and actually no weight gain until 16 weeks of pregnancy. Before starting I was doing the AIP diet (to calm down any inflammation just in case) and once I was pregnant and for the first 16 weeks (while on pred) I did paleo. In theory steroids, sugar and carbs are great together for weight gain and they should be avoided. If I remember correctly it has to do with keeping your blood sugar level balanced. Well, saying that, once I was off the meds I went wild and massively off the wagon so I did have a massive weight gain but not from the pred.
My plan is the same now. I am doing slightly modified AIP and I will see what will happen. ❤️

@taffeta00 hi, just been reading your message. I feel the same way, not sure I agree with the 80%. I'm on 2nd round of Letrozole and Ms Edge said it can take up to 6 times. I feel like with my age I don't want to be trying for that long! But the issue with me is I feel like they are giving me the wrong trigger days. AF is definitely coming early for me too as I've never had a 28 day cycle till now.

@VenusStarr 5k? Wow! It's so expensive. I feel broke every time I leave the clinic 😩. I have the same thoughts about maybe not having any interventions and trying naturally but then get scared in case something goes wrong and what if it's my fault. Why is everything so difficult for us.

@StillTrying10000 I managed to put my order in today for the Filgrastim and it's costing me £246 😬. They said I should be able to collect t it on Monday.

@myrainbowjourney im tracking ovulation because I feel like they keep missing my ovulation day. I just feel like it's not worked again this time 😔

@MrsMargot I had the same, got pregnant first time on the programme but now it's a struggle second time.

So my situation at the moment is that at the scan day 10 of my cycle I was told I have 1 large follicle and 3 or 4 smaller ones. So they didn't want to trigger me as they felt the large follicle might not be a good egg. So they advised I trigger at day 15 by which the follicles will be a good size. The problem is I have been tracking my own ovulation and I got a positive on clear blue at day 11 which means I'm going to ovulate in the next day or so? So if I trigger at day 15 havent I missed ovulation? The same thing happened last month. I feel like we might be triggering too late. I just don't understand it. I have to take the GCSF on day 23. Start medication on day 17. Isn't it all too late? 🤷🏽‍♀️

Thinking of you all xx

Thank you for the positivity posts ladies and @Wireless77 thank you for dropping by. I’m just not sure super ov is right. I am starting the I v f injections tomorrow. I’ve actually only told one friend, my immediate family and my boss so you ladies are my confidants :). I probably won’t post too much and think I need to just rest, relax as much as much as poss and get through a busy work phase.
Fingers crossed for those of you triggering in the next few days.
Interesting to know it’s not just me whose cycle has been shortened by the prog.
I’ve had a word with myself and will be back to positive thinking tmrw. There must be rainbows awaiting us all. Xx
Ps I’m not sure how many of you are local but if pple fancied trying to meet up we could do in Epsom sone time

Yeh, each hysteroscopy is £2600 @Sophi81 😔 really hoping I just need one 🤞
That's good news about the gcsf price, where did you go?
I've only done superovulation once but it delayed ovulation for me. I definitely felt ovulation and got a positive opk on the day of my trigger. I actually looked back last night on fertility friend as I like to loosely track to know when to expect af and the amount of sex we had when we did superovulation was crazy. Like, how did it not work, I had 3 follicles as well.
I'm sorry you feel it hasn't worked. It's hard when you know your body so well but to trust them and their process.

@taffeta00 good luck 🍀 I found the stims process OK and was fairly calm. I liked the focus of doing my meds, having a scan etc. Always here if you want to chat.

I'm not too local to Epsom sadly, but a meet up sounds nice.

Good to hear from you @Wireless77

I hope af isn't too bad today @myrainbowjourney.

Lots of love everyone xx

@Wireless77 and @MrsMargot thank you for your positive stories, it does really help to be reminded it does work ❤️

@Sophi81 I feel very similar to you. I just had my 7th failed super ov and I know I've got the one tube to deal with, but I didn't think it would take this long. Which might have been an underestimation on my part. And I have also had a few cycles where I think I have ovulated before the trigger, and I've always had different responses as to what would happen if I did, and whether the trigger would make me ovulate again. I wonder if they know that for sure, as it would be difficult to check I suppose? But I have felt like there could have been some wasted cycles. I'm grateful for the shorter cycle as before I had near on 40 day cycles so every one felt like a lifetime. But with AF arriving a day or two early this time, I just wonder what's going on.

I'm now sort of looking forward to the break in meds but wonder if I should skip intralipids or if that's low risk in terms of hindering chances. I feel devastated to think this treatment plan is reducing my chances to conceive.

@VenusStarr this is exactly how I'm feeling. 2 follicles of good size on the side of my tube, sex every day for days. How am I here with AF??

How are you today? Is OH around for a nice day out?

@taffeta00 good luck with your injections. Absolutely everything crossed for you.

I'm not local to Epsom, but I'm about an hour away so I'd come for a meet up for sure xxx

@VenusStarr wow even £2600 is a lot! I hope it works the first time for you fingers crossed. I really don't know what they are doing. It should have worked with 3 follicles for you. Last month they were happy with 4 follicles. They said we need to let them grow for a few days and then trigger. But 2 days later my opk was positive and the trigger shot was 3 days after that. So basically my follicles wouldn't have been the right size when i naturally ovulated and secondly by the time I triggered I had already ovulated. I mentioned this to Mr S and he said I shouldn't be using opk as they are not accurate and that the scan is more accurate. So why are we missing my trigger days?

This month it is the same. Apparently I had 1 very large follicle and 4 others which they wanted to grow for a few days and then trigger because they felt the large one is too big for day 10 so might not have a healthy egg. But then why have I got a positive on opk the next day. It's kinda irrelevant of the other eggs as I've not made it to day 15 to trigger. So now I feel like when I do trigger myself on Tuesday it's a waste. I think if this doesn't work I will at my next visit mention that I need to be triggered between day 11 to 13 because I don't want to keep spending over £700 for superovulation if we not getting the dates right. We still had sex according to the opk in case I get pregnant naturally as I didn't want to miss it but at the same time I'm worried what if it wasn't a good quality egg and also what a waste of superovulation if I do.

Fertility friend? I've not used this app. I will download and see how it works. I been using Ovia.

So I managed to get the GCSF from Asda! It's really weird because my local Asda quoted £295 but when I queried it at another Asda which is about 10 miles away they said quoted £246 🤷🏽‍♀️

@taffeta00 meet up does sound good but I'm not local to Epsom ☹️

I know, it's really frustrating @Sophi81 as my follicles were all evenly sized. Mine were 16/17mm and I triggered the next day, but I've heard they hold back and like the follicles to be bigger now? I think my body would just ovulate on its own to be honest. It does sound like timing is tricky to get right.

I ovulate on my own anytime from cd10-11 (occasionally cd9). I wouldn't be too concerned about the egg quality, in the sense you'd ovulate when the follicle is the right size. My 4th pregnancy was a cd10 ovulation and he was chromosomally healthy.

I have put a message to the hospital Pals team, not expecting much, but I just don't remember them preparing me and advising that scarring is a risk and how the manage the risks. I've heard there's different techniques like using recovery gel but nothing was mentioned at all. I also think they need to be clearer, it's a really difficult time and retaining information is so hard. Most of that time is a blur. Plus there's zero aftercare. But I couldn't wait for a referral on the nhs to fix it. Time is not on my side.

Good price on the gcsf, I'm pretty certain I'm going to add it when we eventually try again.

Fertility friend is good if you measure your bbt, I don't always but it's really accurate for me.

@myrainbowjourney are you on hydroxychloroquine anyway? The main thing I think about intralipids is they are a bit of an add on as when Dr S sees nhs patients, he can't prescribe them but he still must have success in his nhs clinic. But I do understand the conflicting thoughts. It's a lot of money and also that mental break from 'trying' can be good.

Yes, dh is off today, having a chilled morning. Going to look at a new (to us) car later - we're both still driving really old cars. It's one thing I hate about all this is worrying about not being able to live normally, always thinking of what that money could be used for. It's very unlikely he'll get the car, but it's nice to look!

Have a good day all xx

@VenusStarr I've just checked the paperwork and I can see that last month I had 3 follicles measuring 17-18 and 1 at 14 so kinda similar to yours. And they told me it has to be around 22. But mine wouldn't have got to 22 if I ovulated 2 days later. And this month I've got 3 at 17 1 at 9 and 1 at 28 by the looks of it. Again same issues. It is sooooo frustrating.

I guess that makes sense that you ovulate when egg is the right size so don't understand why they didn't they trigger me on Thursday and were waiting for the others to grow. I obviously agreed not realising or understanding how follicles work etc. Yes you are right, aftercare is zero! I hate the fact that we pay so much for private treatment yet once you leave your appointment you don't really get any support and if you want to talk to the consultants you have to pay again.
I did ask the question of will I ovulate again at trigger point if I have already ovulated naturally. I was told no you wouldn't ovulate twice so what happens to those other follicles?

With regards to your scarring, what actually caused this? The treatment plan from Mr S?

@myrainbowjourney 7th?? Wow! Have they not investigated this further as they told me it takes up to 6 superovulation cycles. I definitely feel like this cycle will be my 2nd wasted due to missing ovulation! I'm supposed to trigger on Tuesday but my opk is negative now 🤷🏽‍♀️. As for would they know, I don't think they would and I don't think the scan is as accurate as knowing our own bodies and the opk's. The only thing I've never measured is my BBT.
What did the clinic say about your 7th failed attempt of super ovulatation? Are they not going to try something different? I'm definitely going to tell them to trigger me between day 11-12 next time.

No, not crp @Sophi81 it was my local hospital who did my miscarriage surgery and I've got scarring following it. Crp have been pretty good. Although dh and I were chatting yesterday and we said if we just never contacted them again, they wouldn't reach out. But I think that's the same with any health are nhs or otherwise. You have to always push for yourself.

I would say the larger follicle you had was likely not suitable, 28 is over mature. I always thought that follicles grown 1-2mm a day, so 16/17 could be nearly 20mm. I think up to 24mm is good.
Unused follicles just disintegrate I think. One of mine just got stuck at 16mm, so didn't ovulate but didn't disintegrate, but a month later it had gone, was worried it would become a cyst x

Hi ladies, I’ve been a bit of a silent watcher over the last few weeks, but I’ve been reading every day and staying up to date with your stories.

Our most recent pregnancy ended in miscarriage and I had an MVA at CRP at the start of March. We’re now 10 days away from our follow up to find out the results of the embryo testing. Strange to think like this, but we’re hoping for a chromosome issue as this will mean sticking with the current protocol and trying again. Realistically I think the embryo will have been healthy and Dr S will be suggesting GCSF - so thank you all for the information around pricing and trying different chemists.

I will send an update on 20th after our appointment.

I’m sorry to hear you’re all having such a tough time of it, I’m right here with you!

Also, I am only 30 mins from Epsom so if a meet up does happen I would be very happy to be involved x

Hi girls, I often read the thread and just wanted to share my story as i know positive stories helped me and i always said i would write a post.

I started seeing Dr S after 4 miscarriages in Nov 2019, three of them we had tested and the results came back as genetically normal.

My first pregnancy with Dr S i took hydroxy and it sadly also ended as miscarriage five and i really was losing all hope although Dr S seemed very confident we would get there. On pregnancy 6 i took steroids from ovulation and hydroxy and we now have a 3 month old baby boy.
That pregnancy i also took Doxycycline the month i got pregnant . I had taken steroids in a previous pregnancy too but only from 4.5 weeks not ovulation.

I know how truly shitty and depressing it all is and I wish everyone all the luck and hope it works out for everyone xx

@VenusStarr oh I see. I'm so sorry to hear that. Thats like another thing to deal with on top of everything else ☹️

CRP are good but I just feel disappointed that we not getting the right trigger date. If the trigger date was right and I didn't get pregnant then I would be ok to try again as that can happen. But to miss ovulation and then not get pregnant on top of that is like a waste to me😩

On top of that I have to start taking the pred and Cyclogest in a few days for 10 days so I'm kinda wasting medication too as well as the GCSF injection 😬

@Onwardsandupwards1206 aww sorry to hear of your recent miscarriage. Definitely do look around for best price for GCSF.

I am so sorry to hear of your loss @Onwardsandupwards1206 you're similar to me. We were hoping for a reason and ours came back as a healthy girl. He wasn't really able to explain why we lost her after we saw her heartbeat, but said sometimes we just need a different protocol. He's also added gcsf for me. Initially I wasn't going to do it as I have been taking sitagliptin prescribed by Tommy's, but now with this recent set back, I've decided to just do it when we eventually get to transfer. Lots of love.

I feel numb @Sophi81 I know what you mean about starting meds now. It can feel like a waste. X