Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@myrainbowjourney I think that’s a positive step. I have 3 friends who have recently got their BFPs via IVF. Has Dr Shehata or his team suggested IVF too or do they think you should stick with the super ov programme? I know it’s so hard when we see how easy it seems to be for other people. I struggle with that too. Like you said though I think we just need to accept this is our journey. It’s the acceptance that is the hardest part for me xxx

@Tgrf55 me too. I can't help but feel resentful and like it's all so unfair. But it's not changing the outcome so I want to try and feel a bit more accepting of it. Like you said though, it's not easy.

My next step will be IVF after we stop super ovulation. At my last consult with Dr S he said once we decide to stop super ov then IVF will be his suggestion. I have a couple more months but then I think it's the natural next step. I feel like I need to know in my mind what to expect, to know if we are in a position to start xx

@myrainbowjourney I know, I feel resentful too. The ectopic plays a big part in that I think. Stay positive, it’s the only way. Have you had therapy at all since your losses? I really felt I needed it especially after the ectopic and it does help you to deal with the resentment side.

Did Dr S say why he thinks the super ov hasn’t worked for you yet? Xxx

@Tgrf55 I haven't had any counselling. Well, I tried a session under the recurrent miscarriage clinic but I didn't get much from it. I'm not sure it was anyones fault - I probably wasn't ready. I think I'll see how the complaint goes. I think that might give me some level of closure regardless of the outcome.
How long did you go for?

He hasn't said as such, and I think he's confident it could work. He told me most people have success on cycle 4-6 but agreed with me when I suggested I might need more because I only have the one tube, and that stat is for double tubed people. Obviously it can happen much sooner for anyone but I don't think he's thinking I've exhausted it yet. But I think in another couple of cycles it'll be time to investigate further. Because of my age it would be normal to see what's going on after 6 months of not falling pregnant. So I'll give it a few more to allow for the tube, and then move on xxx

@myrainbowjourney still dizzy and super tired and apparently in a very bad mood (husband says that 🤓). I think this time the drugs got me down. Not to mention that I am flirting with whatever has high levels of sugar every single minute of the day. Thank you for asking!

I am hoping it works with the super ov. Not because there is anything wrong with ivf (we did consult with a couple of clinics too before) but if you are anything like me, I need a plan of action. And good to have options. Also good to have the finance sorted. I had a spreadsheet with prices and options. Did I say I am a planner? 😬

On the resentment front, I totally understand. During my first pregnancy another 3 of my immediate friends were pregnant at the same time. I could not shake the feeling that I was this 1 in 4 statistics are talking about. To this day, I cannot see their children and not think that. It really is something. I have to say that at some point in my life I need to go back to therapy. There must be lots of fear and anger in there.

@myrainbowjourney my therapy is ongoing. but my work pay for things like that as part of my benefits package so I figure I may as well. If I had to pay myself though that would have finished a while ago because it’s so expensive and now I’m with CRP I need every spare penny!!

The one tube is so frustrating. I am praying I ovulate from my left side when I start the programme and the left tube catches it. I don’t really have much faith in the tube moving to get an egg from the opposite side, I know there are lots of success stories but I’m not sure xxx

@MrsMargot oh tell your hubby he has no business complaining 😂

I'm just the same with needing a plan. I have to know what's next. That's why I was getting so anxious when I was approaching my 'last' super ov. I feel I need some kind of control. Although the spreadsheet I am lacking!! It's what I need! But looking at the ££ in black and white might terrify me.

I think it's so difficult seeing pregnancies around you. Its never from an unhappy place for the others, but it's just hard. Why it's you that's the one that's being left behind. That's what I always feel like.

@Tgrf55 @MrsMargot I definitely think I'd look to have some counselling at some point too if I needed. If I got it through work I'd definitely do it but like you said @Tgrf55**, I can't justify more outgoings at the moment. Silly really when it's probably really important. I think if I do get pregnant, I'll be so anxious and worried the whole time. I might revisit then, if I ever get there. I think the biggest thing is the trauma of the ectopic and my resistance to ever go back to that hospital. Not sure that'll ever change.

Also @Tgrf55 I know what you mean about the other tube. I do know it's possible, but it's less likely so you just think of the negative. But it really can happen, and there's every chance it'll happen for you if you didn't ovulate from the left. I have all the hope.

@myrainbowjourney it is exactly that, isn’t it? Some control over the situation. I am exactly the same. I felt that everything was out of control so I was trying to make sure I can control the things I could. Still the same.

@Tgrf55 this is an amazing perk. Take advantage as much as you can. After my 3rd mc we did some couples grief counselling sessions. We both deal with grief differently but it was helpful to keep on trying. I definitely want to go back and address my issue, especially with the constant anxiety attacks but very similar to @myrainbowjourney I cannot spare the expense at the moment. Maybe I should start campaigning for this to be added as a work benefit. It is so hopeful that some workplaces are offering it!

@VenusStarr so sorry to hear about this anniversary. I know what you mean when you say you'd never imagine being here now. Remembering the losses is so hard but they will always be a part of you.

@myrainbowjourney would you not do IVF through Dr S? would be interested to know why you are going elsewhere. Dr S pricelist is eye-watering but think that will be our route based on latest experience (still awaiting quote from Dr Jan pa..).

To those talking about the expense of councilling, I got some free through NHS last year. It wasn't ground breaking but was good to talk to someone. She must have said "that's OK / expected /normal /understandable / reasonable" to just about every single thing I said or felt but it did help hearing it all the same! I was also recommended a couple of books through it on miscarriage which helped a bit. Can dig them out if anyone wants to know Xx

@89Hope I haven't spoken to Dr S about IVF at all yet, so I don't know all that much about it. It's purely a consultation to just understand it all more than anything else. Then when the time comes I will also get an idea from Dr S. I would like to have more than one option so I can pick what feels right, but there's no reason in my mind why I wouldn't have it with Dr S.
I have heard his prices are a lot though, and so I'd just like a comparison I think xx

@myrainbowjourney I really do think the trauma of ectopic is so awful. Everything you say I resonate with. Maybe get on a wait list for NHS therapy and give it a go and see if it is helpful for you. Nothing to lose when it is free, although I’m not sure how long the wait would be.

@MrsMargot I know, I’m very grateful I can get it for free. Mine is through my health insurance with work. I suspect most people who have access to health insurance through work do also have access to counselling but it’s just not openly advertised. I didn’t even realise until someone at work made me aware. Def campaign for it at your work!

@89hope could you let us know a rough guide to the cost of IVF with Dr S when you hear back? (If you don’t mind) I would be interested to know too.
Btw, totally agree about the therapist saying your feelings are understandable lol. Mine also does this a lot!!

@Tgrf55 that is interesting! I do have private health insurance at work. I am wonderImg if it covers it and indeed they do not advertise it. I did find out they were covering pretty substantial physio from a colleague. I shall give them a call tomorrow! Thank you! ❤️❤️❤️

@MrsMargot oh definitely have a read through your policy then! Counselling is usually covered. Good luck - let us know how you get on

@Tgrf55 @MrsMargot I have it too, going to check through mine! xx

Good morning ladies, I have debated asking this as I know it can be so personal to discuss and rude to ask. I've weighed up all my options and think Dr S is the way forward. I imagine based on my autoimmune disease that I'll need the complex plan and yesterday was sat looking at our savings, figuring out if I have enough. I don't want to start and only be able to afford 2 months of his treatment for example. If you don't want to post here, would any of you mind letting me know roughly how much you spent on Dr S's plan, either so far or initial tests then monthly cycles via PM? To start with I don't imagine I'll need super O but these costs could be useful to know too. I just need to know If it's out of my reach as I'll need to look elsewhere which will be hard to get my head round. Thanks in advance 😘

Sorry I should add, I've seen the price list, but it's hard to piece this together, especially if you take/leave some elements. How often are you expected to have scans etc and has anyone left off parts of his recommendations for example. xx

@FfayeN Hey! Ok so far we have spent £3,500 on initial tests, a scan and my medication. I think the initial tests would have been around £2,000 which included the first meeting with Dr S but he wanted me to also have a hyfosy to check my remaining tube because I recently had an ectopic pregnancy and he also wanted my husband to have a DNA sperm fragmentation test. I also wanted a scan at my first appointment so that all added around 1,500 on roughly.

It is a lot of money but I don’t think you can really go in there with a set number in your head because everyone is different with the treatment they will need and tests etc. For example I now need to pay for the super ovulation programme each month too and I also didn’t realise that once you are pregnant the scans you need every 2 weeks are £350!!

The medication isn’t as expensive as I was expecting it’s really the initial testing that uses the most of your savings. Sorry I know I haven’t given you much of an idea but I hope that helps in some way. I would expect £2,000 for blood work. Xxx

Hey everyone, I had a scan this morning with my IVF clinic and it's not good news 😢 he thinks I have scarring following my surgery in November. I'm gutted. I thought that it was ok as my periods are normal flow, colour etc. But he said he was unhappy to proceed until I've had a hysteroscopy. I've contacted CRP to book in with Mr Jan.
I know it's the right thing and I don't want to waste my embryo but ffs. Why can't something go right?? 😢😢

Thank you for your kind words @myrainbowjourney @89Hope @Sezmarelda1 @Tgrf55 ❤️

Glad you found us @Sophi81 I use ubiquinol too, I buy from amazon.

@FfayeN I'm not the best person to ask, we're well into the thousands now. But initial costs were about £3500 for the bloods and tests.

Lots of love everyone xx

@VenusStarr so sorry to hear you are going this 😩. I really hope everything works out for you. There's nothing worse than being in a situation where you feel like it's never going to happen. I know how it can make you feel so deflated. I'm not sure what hystrosocopy is but I hope it all goes well. Xx

Thank you for your answers, I know it's hard to give a figure but even what you've advised gives me a starting point.

@VenusStarr so sorry to hear what you're going through, it must be so hard to keep positive but there's hope where there's treatment to create the best environment for your embryo. Sending love

@Tgrf55 thank you for the info, are you planning to do the by weekly scans when the time comes?

Hi @FfayeN, welcome to the group.

I was the same before I started. I wanted to go for it but I had to be prepared in my mind.

Initial tests for me were about £3k I think. But I also had to have the hyfosy and that included the consultations. I am on the complex plan and super ovulation and my monthly bills are around £800 🤮. Without super ovulation it would maybe be half that?

@VenusStarr I am so sorry to read that update! It does seem so unfair sometimes and really feels never ending. Did your clinic say how long they'd expect to have to wait to try your cycle? Sending you so much love as always xxx

@VenusStarr I am so sorry for these news. That sucks. Where they able to see any scaring or they assume you will have scarring?

@FfayeN similar prices to the ladies above. Initial blood tests is 2019 where £2700 including the first two consultations and medication. I had some basic blood panels from previous tests and he accepted them so I recon I saved around £500. This time around I paid £2k for updated bloods the two consultations And medication for 3 months. I could have possibly ask the GP to do the general blood panel and hormones (due to my mc history and age. This would have saved around £150-£200).

Once you are pregnant, you need to go for intralipids at 4, 8, 12 and 16 weeks and scans with him at 6,8,10,12,14,16 weeks. I can’t remember exactly how much I have paid but I can have a look on my spreadsheet as I was keeping a very close account on finances. At every scan, you will be getting your medication for the next two weeks. There will be additional things that you may decide to do (or they may be required) such as a harmony scan etc. There is also the option to do more scans past 16 weeks with Prof Akolecar. These are roughly every 4 weeks and they cost around the same as those with Dr S. Obviously, you can opt out and do the NHS scans.
If I can help in any other way let me know!

Thank you @MrsMargot and @myrainbowjourney that's really useful to know thank you. Better get the hubby doing some more overtime 😬. Best wishes to you both too xx

@FfayeN - I think you have to do the bi-weekly scans as part of the package due to them wanting to keep an eye on things as they are prescribing the drugs. But regardless, I would go anyway just for peace of mind i think!

@myrainbowjourney - How much are you paying per month for super ov? On the sheet i was given im sure it said that after the first month there is a package for £275 a month i think. It's so much money all the time :(

@VenusStarr really sorry for your news. Hope you are ok. Is the scarring from a D&C? How many have you had? I had one in November too and this was also my worry. Try to stay positive but i know it is SO hard. Sending you so much love.

I am feeling super deflated today. I feel resentful that we have to go through this journey and pay out so much money to get what so many other people get so easily and for free!!!! It's not fair, any of it.

Rant over!

Hope everyone is ok today xxxx

@Tgrf55 I pay the same as you said for super ov, but I also have intralipids at the same time, my trigger shot and the meds. It's usually somewhere around the £800 mark.

I TOTALLY feel you and that rant today. I think this another month that hasn't worked for me. I was ever so slightly hopeful as I had some very light spotting on Monday - either 8/9 DPO which is really unusual for me. But my FRER was negative this morning, I think. Thought I could see something but I know I'm kidding myself. It's getting harder each month and I'm becoming more and more bitter about it. I'm getting closer to wanting out of all this. It's so much to deal with xxx