Immune/NK cells pred thread #31

@VenusStarr Honestly all I can say is when I was there, I thought it was all a bit wacky (as I am of a medical profession so science and evidence is where my head is always at) but the only thing that made me want to go to him is because of how busy he is, how confident he was and how he doesn't even advertise himself as all his customers are through word of mouth recommendations. I also felt that if he was 'scammy' he would have told me to come back for more sessions, but the fact that he only told me to do the one with him is what made me left questioning myself and now all I can go by is how I feel (which is amazing). His name is Michael Gorman it'll come up if you google him based in solihill and he definitely does acupuncture so even alongside treatment from what I can see from reviews, but he also does some other things like EFT to release trauma, and honestly some other weird things too that I can't even begin to explain the logic behind. But there's obviously a reason why people go to him, and he's fully booked all the time. His website has a booking portal, i think the earliest it says is end of november but every day I have been checking his timetable and I managed to get a cancellation (it comes up on the calendar - as soon as you see one available, book it asap as they go SO quickly, I tried last week too and saw one, I clicked it and within seconds it went).

He does want to see you both for the consultation, after that i'm guessing he will tell you what he thinks- for me he just said I didn't need to come back and also gave me a timeframe for when i'll get pregnant so lets see. But it may be good for dh as he's been poorly hasn't he recently, so he might be able to help him (he doesn't just treat infertility - my dh has a bad back and he sorted him out) it costs £90 for the consultation and that's together so just one charge. He also told me what I was allergic to and that it affects my hormones so have been told to avoid eating certain things. All I can say is, I felt a huge weight lifted off my chest and felt like I could breathe again after seeing him. Let me know if you decide to see him, I just think at this point I'll try anything to heal! x

@VenusStarr @star2022 I think I saw this guy two years ago too. Also West Midlands area. I did get pregnant a couple of months after seeing him for two sessions. It was a very strange experience to be honest. But I went on to have two more losses. So, I don't think he 'fixed' me. I do think he helped release some stored trauma and also fear which was holding me back from falling. So I'm tempted to see him again as think fear and trauma do strange things to me. Not related but West Midlands peeps, did you know you can get intralipids at a place called Cherish in Sutton Coldfield for £200? I've done this a few times when I'm having a low dose/trying naturally cycle not with CRP to keep the costs down!

I'm on a first cycle back trying after my laparoscopy and already finding the meds hard. Sorry to hear you are all finding it tough too. I'm not sure we have it in us to try ivf if SO doesn't work for us soon. Thinking we may try for a few more months and then have a break until the New Year.

I'm currently away camping trying to get away from it all but these meds do make me feel low!! Hope everyone else is managing to have a nice bank holiday weekend x

@Lily1990 I'm so sorry your cycle hasn't worked. It really is shitty. I hope you have a lovely holiday, taking time away from all this sounds like a great idea x

@VenusStarr Yes I'm in the west mids too so my ivf last year all took place at Create Birmingham (although that was a trek for me too as its pretty much an hour or so away from where I live). I also heard CRP do max dose of stims with both gonal-f and menopur and I think this wouldn't suit my body either as I tend to respond better with less drugs. I even tried telling them i don't think that would work for me, but they didn't offer any alternative protocol which makes me question whether its the right clinic.

However, after a really shitty few days I came across this guy who deals with infertility, trauma, ivf, stress etc based in Solihull he's been doing it for 30 years. I thought of you and whether you'd be open to seeing this guy if he can help with the trauma side of things? He's fully booked until end of november but I managed to randomly get a cancellation on thursday straight after i had a little cry, it felt like it was meant to be. Anyway we both went to see him, its a 45 min consultation and he literally said dh was fertile and i wasn't. My heart broke, but he then said he can 'fix' me. He told me there wasn't anything actually wrong with me, and that the drugs are actually making me worse. He diagnosed a few things which he apparently sorted, did some trauma healing, acupuncture and some other stuff which i'd never seen before, told me my body needs to have a break and that when i do, i will fall naturally and that i don't need any more sessions with him. It was SO strange, but he was 100% confident. He also has a crazy track record of amazing reviews and success stories. I don't know if something like this might help you before you embark on ivf, but i feel like a new person since seeing him, happier, lighter and just clearer head and less aches and pains as i have had a bad back for a while which he said was trapped trauma and sorted and its completely gone now. I've also decided to take a break like he suggested so lets see if he's right. I haven't even taken the steroids or meds this month and i ovulated yesterday. Happy to send you info if you need, i know holistic remedies aren't for everyone but I genuinely do feel heaps better.xx

Hello everyone, thank you for your supportive messages ❤️ unfortunately this is a chemical. My period hasn’t started yet but my test today (14DPO) was fainter than yesterday at 13DPO, which was already faint. And CRP told me to stop taking the meds and expect my period given the faintness of the tests. Obviously I’ve only had positive tests for a few days so it’s super early, but it’s been such a head f*ck and feels extremely frustrating to have had a loss on Dr S’s plan, which I had so much hope for.

I’m wondering if they will increase my pred dose to 25mg as only been on 15mg. And maybe we will consider IVF with genetic testing to have more control over all variables.

@star2022 sorry you are having such a rough time, that is really upsetting. This process can be brutal, I don’t know why the universe can be so cruel at times. I think having some time off is a great idea as it will really help your mental health.

@clhiuperhaps have a cycle off SO and see how you go? If you have conceived easily in the past without, it doesn’t make loads of sense to keep putting yourself through it and the extra expenses. I’m sure they are going to try and persuade me to do it because my ovulation is so late (CD25 last month) but I’m very resistant given lack of success in the past!

@VenusStarr hope you are doing well too, good luck for your test day xx

I’m gonna take some time away from mumsnet and fertility stuff as on holiday but I’m thinking of you all and sending a big hug! Xx

Hi everyone, hope you're all okay. Its horrible to see how many of us are really struggling to pick ourselves up, I've caught up on all your messages and just wanted to send you all lots of love, i really do hope we get some good news soon ❤️

I wish I had some good news to share but I don't. We had our 6th month of SO scan this week, this time I was on 10mg for the final month, and as I thought I didn't respond well. I responded better on lower doses. I went in on day 7 of my cycle, and already had a dominant follicle at 23mm, lining was at 6.5mm and I was triggered at the clinic. I didn't have intralipids this time as i thought whats the point. I felt so defeated leaving the scan as dr edge went over next steps and going back to ivf (almost as if this 6th month is gonna be a bust)

Just seeing the meds list again made me feel nauseous and the thought of it after having 4 transfers and 2 egg retrievals already just makes me feel so shitty as if my body just isn't doing what its meant to. I literally cry almost every day why is this process so unfair?

I questioned whether my issue is these meds speeding up the growth of my follicles too quickly so that the egg inside is immature but i was told it shouldn't make a difference, however when i google (and i know i shouldn't google) they all say a short follicular phase isn't good as it doesn't give the follciles enough time to mature. I'm getting to a point now where I just don't want to be a guinea pig anymore if I was to go back to ivf, and the thought of it really triggers me as I've only just gotten over my ptsd from it.

@VenusStarr I totally relate to how you're feeling, I just don't understand how the universe can be so cruel to make us have to go through it all again. I'm debating whether to have a few months off or do I just have september off and start it in october..I still don't know how I feel about doing it with CRP as I kinda want to be in the comfort of my own home if i go through ivf again but i don't know which other clinics to approach in the west mids. Sending you a big hug, I know I don't always respond in this group but i'm always thinking of you all xx

Thank you @VenusStarr, I am sorry things keep being so difficult and crappy for you, I really feel you ❤Haven't cried today -yet! But have been livid with rage at the sheer irony of it all. I just can't get my head around how pregnancy came easily unaided and now I'm put on something that should speed it up and I'm responding well to the drug, but I'm just not getting pregnant at all. It doesn't help I work in an office with a predominantly female workforce and I'm constantly surrounded by either someone who's pregnant or just returned from maternity leave, I could not concentrate at all at work today, all I wanted to do was going home and punching a pillow repeatedly, in fact I had an overwhelming desire to actually smash something up with my bare hands all day.
But yeah, I can see why you're feeling completely deflated and demotivated, yet as you say, for as long as you keep yourself going, the hope is there and may not be a bad thing as it may eventually take you there, it's just all very exhausting.

@Lily1990 you hit the nail on the head there, the BFN sure hurts even more when you're £350+ lighter each month from the meds, scan and trigger and yet all I would like is an explanation as to why. I get some people don't respond well to it in the first place, but I did, lining and ovulation, so why? Does it create an imbalance into some other hormones that are necessary for implantation etc...I have no idea, but I will be sure to ask Dr E at my next SO scan and then decide whether to do any more Letrozole or just full natural with the immune. Having said that it could be the immunes as well as the Letrozole, they just need to explain things if they don't make logical sense.

I think I'm trying one more SO + Hyfosy and if there's a good response again, but no pregnancy I may even ditch CRP altogether, I'm not convinced the intralipids make that much of a difference and given the cost, I may try with Pred and cyclogest alone plus the usual aspirin and cocktail of supplements.

@nottsgdns I had an ERA, but I echo @VenusStarr that evidence in support is debatable. I was in a similar place to you when I finally got to my embryo transfer, thinking I already tested everything and that 'as long as I could create at least one euploid embryo through IVF, implantation wasn't a concern' of my consultant because I got pregnant naturally so easily, I thought I'd already tested everything under the sun and then suddenly my consultant throws all these other tests at me, including ERA, which I ended up paying for in the end because 'what if I don't and it doesn't work and I only have one embryo I will always wonder' - well, it still didn't work so felt utterly stupid for having wasted more time and money on all that. I think the main reason why ERA is debated is that however accurate in the cycle you are tested, there is no certainty that your receptivity window wouldn't vary from cycle to cycle. I remember getting very angry when my consultant brought up these additional tests, that I did what I needed to do, spent a ton of money, was ready for the final step and then suddenly the responsibility is put on me again to make more decisions that could make or break the pregnancy. I feel for you and see you. x

Hi all - sorry, not been around for a while trying to "just relax" ahead of the FINAL EVER PREGNANCY ATTEMPT.

Glad to hear of everyone's progress. No one can say we haven't tried our hardest to figure it all out.

I'm on IVF FET cycle 5 (2nd on Dr S's protocol which this time is hydroxy, intrallipids + progesterone). Agree with the hair loss mentioned above, mine is coming out in handfulls after 2 months on the drug.

Having thought that post IVF attempt number 5, I'd be able to carry on life with "no regrets" and having tried everything, I'm now being told about tests I've never considered before.... things like the ERA and so on....which mean I won't truly have "tried everything" and I'm a bit bummed out about that. I guess I'd heard of these extra tests but never realised they were something I should do until cycle 5 and now, honestly, I'm finding myself becoming a bit over it all. Not to say that hugging someone's newborn doesn't fill me with longing, but it's not quite the obsession it was and I suppose that is the best outcome for me.

Anyway - my question as a needle hater is....can I get away without doing intralipids? or are they significant?

Sending lots of love X

Hi all,

Apologies for being quiet on here. Just a bit pissed off with CRP at the moment. I was late doing my tacro blood test by 2 days and they stopped my medication that I had been taking for a month!! I know they have strict protocols when it comes to this medication but i just think it was uncalled for. They said I have to come for another consultation with Dr Edge and she will determine whether she will allow me to continue on the meds. Just shows they have no compassion at all and its simply a money making scheme for them.

They still haven't advised me if i can ttc yet and it just seems like its all going to be in the distant future. I emailed the nurses as well and they have been so rude and have no compassion over someone's situation!

Hope everyone is doing okay 🩵🦋

@VenusStarr thank you so much for the advice, that is super useful to know. I’m now 12DPO and had a ridiculously faint positive today, but am sure this is a chemical as the line faintness today at 12DPO is similar to what I would expect around 8/9DPO. Having to wait it out and try to be realistic. Wondering if I need to be on a higher dose of pred (as only on 15mg) if my NK cells have already attacked this one.
I am sending you a big virtual hug. This is exhausting and you are doing so well. It’s a hard choice whether to go through IVF, but it could work and I think sometimes we need to know we have tried everything before giving up. Hope you have a good day at work today and you can take some time off soon xx

@clhiu im a bit skeptical about SO myself, as have conceived 5 times and never on any of the 4 letrozole cycles I did (even though everything supposedly looked great at the scans). I can’t help but wonder if letrozole puts my body off! Also I know I find a BFN less disappointing if I haven’t splashed out lots for the scans and trigger. But obviously it does seem to increase the success of lots of people and I’m basing my judgement only on my own experience! Xx

Thanks for sharing your stories @KtAgs and @NessyT91, pleased your scan went well yesterday ❤️

Cycle 2 ended in another BFN for me despite very good lining and 3 leading follicles, already losing faith in this protocol, but trying to remind myself of your experiences and telling myself not to give up before at leas 4 cycles. I will however be asking Dr Edge at my next appointment why she thinks it would take me up to 6 cycles when in my natural attempts I always got pregnant within 1-2 cycles, I would really like to understand the scientific reason for it when we know I’m definiovulating 🤷🏻‍♀️

How are you getting on @VenusStarr ? I hope everyone else is all right.

Glad to hear your scan went well as well @NessyT91 .

I also conceived on a natural cycle. It took me 10 months to get pregnant. (Previously before 35 it took max 4 months to get pregnant). The clinic were keen for me to try SO but I didn't fancy it.

Similar to NessyT91, I had my first treatment to get DC during the height of the pandemic so I was on steroids and hydroxy, cyclogest and intralipids but really didn't like the steroids so Dr S dropped that and I had ovulation intralipids. And it worked first cycle of trying that.

This time, I had Humira added and tbh I forgot to get ov intralipids and didn't have 4 week intralipids either because I was away. Fingers crossed that's all worked though.

Xx

Thanks so much everyone for the kind words. ❤️ the scan went well this morning which was another great relief.

@VenusStarr im so sorry you’re having a tough time in work at the moment. I hope it all resolves itself soon.

@clhiu it took me four cycles with my first, and five with this one. I didn’t go down the SO route, although I was tempted to as it took a bit longer to conceive than my first three pregnancies. I’m taking Hydroxychloroquine, cyclogest and intralipids. I know a lot of people take pred but when I first went to Dr S it was in the middle of covid and he wasn’t prescribing it as much. I’m based in Ireland now so I’m no longer under Dr S but I’ve found a clinic here who have prescribed me the same plan. I’ve found hydroxy fairly ok, no bad side effects thankfully although it does taste fairly gross!

Delighted for you @KtAgs. Hope you’re feeling well x

@VenusStarr really sorry to hear your natural cycle isn't going as planned and you've not managed to pinpoint ovulation. AF due on your 40th birthday is really cruel and unfortunate timing. I started AF on my 41st birthday after loosely trying to conceive for about 4 months and broke down, it wasn't the best of birthdays I must say. Really good that you have a plan post this though. Your body guven you any more signs since yesterday?

@NessyT91 and @KtAgs congratulation on your successes. Would you mind me asking how many cycles with CRP didi it take you? Are you on the Pred and Superovulation protocol?

I'm waiting for my OTD on Wednesday, but cannot put aside the niggling paranoia of an ectopic due to a stitch like pain localised to my lower right hand side tummy since CD5, probably too early to be a sign of ectopic yet, but if anybody on here has any experience of it on this thread, I'd love to hear your thoughts, not much I can do I know until PT and Beta HGCs I realise. The pain comes and goes but at random times it suddenly spikes to more like a stabbing level and a couple of times it stopped me in my tracks the past couple of days. It doesn't seem to be linked to moving or position although I'd swear just now I could feel it lightly responding to taking steps.

I hope everyone else is doing ok

Hi @harrietm87 and @NessyT91 .

Nice to hear from you both again 😊.

I've also got hesitant good news. Baby measuring on track at about 9 weeks today at scan. So much nicer getting scans at the clinic vs the NHS. Unsurprisingly.

Sending good vibes all your way and fingers crossed for all of you trying on this tough journey.
Xx

@harrietm87 nice to hear from you again! That’s great that your GP has agreed to prescribe the treatment for you - should cut down a lot on costs and travel. Hoping for a sticky BFP for you soon!

@Lily1990 im sorry this cycle hasn’t worked… it’s such a trying time! I find that it takes me a bit longer to fall pregnant on the treatment plan - for my DD it took 4 months and this time around it took 5 months. When I’ve tried without I would usually get pregnant within a couple of cycles but then would miscarry around 5-6 weeks. Hoping for you that this cycle will be the one!

I’ve been a bit hesitant to share the news this time - scared that I’ll jinx it I suppose - but we had good news at our 7 week scan a couple of weeks ago. Baby measuring on track and a strong heartbeat. We’ve got another scan tomorrow morning so really hoping that things are continuing to progress well.

@Lily1990 thank you.

I was very lucky with my previous experience - conceived DC1 on cycle 1 and DC2 on cycle 3, both with SO. I had 4mcs (3 before DC1 and 1 after) and they were all conceived first time so I’ve never had a problem actually getting pregnant, just couldn’t stay pregnant without the pred! All 6 of my previous pregnancies were when I was 29-33 though and I’m 36.5 now so feel like it will probably take longer this time.

Has anyone had bad nausea with the pred? I didn’t have any at all previously but have felt so sick this time and am only 7 days in.

Hello all, hope you’re doing well ❤️

My second cycle hasn’t worked, and have been plagued by some frustrating easy@home evaps (although my fault for scrutinising them hours after the window for reading the test!). The amount of time I waste on this stuff is ridiculous!

Last time I conceived, it was right after a Hycosy and I’m keen to try and have another one to boost my fertility. Does anyone know if I’d have to have an appointment with Dr S first before arranging a Hycosy at CRP? I’m assuming so as we didn’t discuss this before. If that’s the case, I guess I may as well wait to the review appointment after 3 cycles.

also another question, do we need the blood test results that they request we get from our GPs (eg full blood count etc) for our 3 cycle review with Dr S?

@harrietm87 hope youre doing ok, sorry you’re having a rough time of it with the pred and bad memories. Fantastic you had 2 DC on his protocol though! Did it take you long to conceive both times? I’m starting to feel frustrated it will never happen for me!

Just popping on to say hello to @KtAgs and @NessyT91 who I’m pretty sure I remember from the 2020 thread - congratulations on your babies!

I had DC2 in Nov 2020, my second with Mr S, and trying again now for baby 3 having persuaded my GP to prescribe the protocol (without intralipids) which for me was pred and progesterone. This is only cycle 1 for me and the first time trying without SO - brought back a lot of bad memories and the pred is making me feel horrendous.

Im sorry for everyone that finds themselves on these threads but wishing everyone the best of luck.