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IVF Multiple Cycles and the Long Haul BG #16
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Posted 30 May 2013 - 08:13 AM
Hi Sparky, wow you have had a really rough trot with this IVF thing, I'm so sorry. I only get a very small number of embryos (5 transferred from 4 cycles, two of those were only Day 1 so I have no idea whether they were remotely viable, and the other three were slow/erratic growers, so probably sucked too). I've been taking DHEA for three months now and am about to head into my fifth and possibly final stim. I haven't really noticed any side-effects from the DHEA, except for maybe oilier hair and pimples, but they could be from anything. This cycle has been very slightly longer than usual, but I did a medicated FET last cycle so I figure I was a bit screwed up from the hormones.
If this ends up being your last cycle, are you looking at using an egg donor? That's what I'll be doing. We're already using anonymous donor sperm due to DH's azoo, so the genetic thing is not a bit deal for me at all.
Anyway, today is CD 1 for me, so here we go... back on the train for ICSI #5, for maybe the last time, and hopefully the last time for just a couple of years! Start Saizen tomorrow and Gonal-F Saturday, and my first scan will probably be next Thursday, but I need to ring the clinic today to book it.
Posted 30 May 2013 - 05:09 PM
Hi Sariele. Sorry to hear what a crap IVF journey you have had too. It really sucks doesn't it....especially when you see it working for others first time. I'll be really interested to hear if you have better results from the DHEA (I hope so). My skin is dreadful because of it (though my FS claims this is a good sign that it is working) and my period is now 3 days late (though spotting has started so hopefully tomorrow). I really pray it is worth it and it's 5th time lucky for both of us!
I'm not starting my next cycle to late July but I have an appt with Dr Sacks in a couple of weeks to get a second opinion regarding my NK cell issue. My current FS is not a great believer so I will be interested to see what he has to say.
DH and I have decided that a donor embryo is not for us. We don't know anyone suitable to donate and using an anonymous donor is just not for us. Whilst I fully understand why people would want to, we are just at our wits ends after over 3 years of trying and 4 stim cycles. We just don't have the emotional strength (or financial resources) to go down the anonymous donor route.
The way my clinic charges for PGD is that if you get 2 or less embryos make it to testing on day 5 then the next cycle they only charge you the standard IVF and not the extra PGD fee (even though they still test them). As such it makes sense for us to do two more cycles and if that doesn't work I think it is time to move on with our lives and just accept that it is not meant to be. I'm really hoping it doesn't get to that though.
Hi to all the other ladies. I look forward to getting to know you all.
Posted 30 May 2013 - 05:13 PM
Dadora - just had a chance to read through some of the older posts and noticed you were querying CGH. I've been doing CGH on my embryos so if you have any questions I'm happy to try and help.
Posted 31 May 2013 - 03:45 PM
Hi Sparky10, I am a little like you are the moment. I am not sure if I am ready to do Donor egg or sperm. I am an only child, so don't have anyone to ask really, my DH Is adopted, so okay with the donor sperm but he has a son from a previous relationship and it kills me that I can't have his child, DSS was a 1 in a million chance apparently, I am thinking of asking my FS on Friday for NK Cells testing and also DHEA. I believe that I have to try anything. What do you mean your skin is really bad.
Sariele - best of luck for the next cycle. I am with you, that our next cycle will probably be our last and final. I am 38, so time is running out for me and after 3 years and debt, I don't know if we can continue this journey, although my DH keeps telling me that we will sell everything we have. I just don't know if I have the emotional strength to do it anymore.
Posted 31 May 2013 - 05:00 PM
I was thinking of joining you while we work our way through what is likely our last FET after a long break (about 6 years or so). We start around 2000 so this has been a rather long term effort which I think will come to an end with this FET. 6 years ago we headed off in a different direction hoping that might work, but no success there either. But we were neither permitted nor at the time really with the energy to face another FET. This will be something like our 24th cycle. I'm fully accepting this is more about closure. I hope that's not too depressing.
Posted 31 May 2013 - 06:59 PM
Hi Amberspark - Sorry to hear you've had such a rough journey too. When I told my FS that the next cycle would probably be my last she suggested we do a few things. Firstly get checked for endometriosis and NK cells and secondly try DHEA for 3 months before undergoing another cycle. We have previously tried Saizen (which is also supposed to help egg quality) but unfortunately, whilst it increased my number of follicles, it didn't seem to make any difference to my egg numbers or quality. DHEA is really our last resort but I'm trying not to get my hopes up too much. We'll see what happens I guess. By bad skin I mean I look like a spotty teenager. I have pimples all over my face! Still both my FS and chinese medicine/acupuncturist claim this is a good sign. I hope they are right
Estel2 - welcome. Sorry to hear of your journey but I hope this FET is a miracle for you. I do know what you mean though. I'm also getting to the point in this journey where I feel like I am doing it just so that I can say I tried as much as I could rather than because I actually believe it will work. I really hope it does work for you though.
Sarile - hope you are doing ok.
Posted 03 June 2013 - 10:58 AM
Welcome Estel I hope your stay in this group is a short one - for good reasons
Thanks for the info Sparky. It really seems my FS has little to no idea what he is doing CGH wise. Did you have to do a lot of prep work to get started down that route? My FS has told me it will take months to get prepared :/
Posted 03 June 2013 - 02:40 PM
Hi Dadora - that does sound a little strange. If you do PGD to test for a specific genetic mutation then it can take months as they sometimes have to do a work up to develop a specific test. With CGH however my understanding is that they simply test all the chromosome and therefore no work up is involved. We started the month after my first FS appointment. There was no waiting necessary so I would definitely query with your FS why you have to wait.
The waiting for me always comes afterwards as my clinic does CGH on day 5 embryos. They test whatever you have on day 5 and you have to wait about 2-3 weeks for the results. They then do a FET the next month. It does drag out the process quite a lot but my clinic is of the opinion that FETs are better than fresh transfers anyway. Different clinics do things differently with PGD though so you may have a different protocol.
Posted 03 June 2013 - 03:35 PM
Oooo, that is just infuriating then I think they are just really disorganised. I tried calling my clinic after speaking with FS about it (and getting nowhere) and they kept saying "PGD". So, OK, I guess it IS a PGD but like you said Sparky, it's not for a specific genetic mutation.
May I ask what clinic you are using at the moment, Sparky? I can PM you if you prefer? Unfortunately where I live I don't have a wide choice of providers :/ I know my clinic also does day 5 testing and FET after, so at least that is a good thing.
Gosh, ATM I feel like stomping around the office and having a tantrum, lol. AF must be around the corner
Posted 03 June 2013 - 05:09 PM
Sorry to hear they are being so difficult Dadora. If there is one thing I've learnt from this journey it's that you have to be assertive to get what you want. I would keep pushing them to explain to you why there is such a delay. I'm with Genea and they do all their own testing but I know some of the interstate and regional clinics don't do their own testing. They get Genea to do it instead. Maybe this is part of the reason for your delay? I'm not sure but I think they at least owe you an explanation. I feel for you. It is so frustrating all the waiting around with IVF. I think the clinics sometimes forget what a big impact they are having on our lives.
Posted 03 June 2013 - 08:40 PM
Hi guys, just thought I'd stop by even though I can't really contribute much to the current conversation, lol.
I'm CD 5 today; day 4 of Saizen and day 3 of stims. Been feeling lots of ovary twinges and strangely some pre-AF type feelings too, so hopefully there's already a fair bit of action in there. My scan is on Friday so I'm anxious to see what kind of numbers we're dealing with, and whether the follies are doing what they're supposed to be doing...
Posted 03 June 2013 - 10:45 PM
Hi sariele, hopefully all of those twinges mean lots of follies! get of luck with your stimming.
Sparky - hmm I'm with genea, too...maybe I've just got a dud FS :/ alright! I'm ready to get assertive!
Posted 04 June 2013 - 07:57 AM
Dadora - that is even more strange then. Genea can definitely do CGH without a waiting period. Perhaps your FS just hasn't done it much and doesn't realise the normal PGD waiting time doesn't apply to CGH. I would start harassing your FS as I find the nurses don't do much unless they have clear instructions from the FS. I'm lucky my FS is pretty proactive but even so I have had to push a bit to get things done when I want them done. Good luck. Maybe we can start together! I'm due to start my next round in late July.
Sariele - Great to hear from you. I'm thinking of you and praying that DHEA does the trick for you this time. Good luck for Friday. I'll be stalking for an update. How many eggs do you usually get at EPU?
Posted 04 June 2013 - 11:52 AM
Sorry I have been MIA. Well yesterday was my appointment with my FS at the Royal Women's, it lasted a whole of 10 mins. Basically he told me that as we have tried everything within the IVF protocols, there is not much more they can do for me at the RWH. I was floored, I asked about DHEA and he said they are not allowed to at the public hospital. He referred me to a Dr that apparently still works with Melbourne IVF but outside the square apparently. To say that I was devastated was an understatement.
They said my egg quality is really bad and with DH's sperm problems, we need a miracle. Gee thanks.
So I rang as soon as I got home and low and behold, they had a cancellation for tomorrow and we got straight in. So I don't have to go through everything again. I still have the appointment with the Monash Dr which its looking like I will keep now. Surely this is not it for me. So Confused.
Just a question for other long haulers. I have been having some issues with my insides, seems to be after the last cycle, It is still really sore and tender in there and I have had a period since the last fail but its just still tender and seems to be causing problems with my bowels. Sorry for TMI, I have had a Pap smear and will be having a US tomorrow to double check everything.
Posted 04 June 2013 - 05:08 PM
Hi Amberspark - I'm sorry to hear your FS was not much help. DHEA is still somewhat of an experimental drug so I guess, whilst it is frustrating, it is understandable that it is not available at a public hospital. My FS uses it as a last resort only. She thinks it may be of benefit but there have not been any large studies on its effectiveness and it's long term side effects are somewhat unknown. As such she has been very particular that I should only be on it for short periods of time (3-4 months max). I'll try anything at this point though. There is also a drug called Saizen which is supposed to help some woman. It is less experimental but way more expensive than DHEA. I tried it on a couple of my cycles and unfortunately it didn't work but apparently it does work for some woman. I don't think you are out of options yet so don't give up hope. You just need to find a more progressive FS. Good luck with your appt tomorrow.
With respect to your insides, I haven't had that issue but I did find after my third stim my body was really run down and exhausted. I stupidly went ahead with a fourth stim (after having a month off) and it was a bit of a disaster. As such I think your body does pack it in a bit after a few cycles and you need to take a break. I will have had 6 months between stims before my next one so I'm hoping that helps. I find acupuncture is also great for helping with the recovery.
Posted 05 June 2013 - 02:15 PM
Sorry about this news from your FS - its not easy to deal with. I hope you may find some new approaches with some other doctors that could help.
Posted 05 June 2013 - 02:24 PM
Thanks Dadora! Though it will probably be short regardless. My estimate is we will be looking a transfer at the end of June/start of July. Just started the syneral today. Its kind of odd being back after such a long break. So many things I hadn't thought of for ages, or done. Such as drinking coffee: I think I spent about 5 years during IVF totally caffeine free but have fallen for it again since.
Posted 05 June 2013 - 02:30 PM
Thanks Sparky10. Good luck with your DHEA treatment. I hope it is the answer for you. But I hear what you say.
Posted 06 June 2013 - 11:37 AM
Goodluck estel2 and we are on the same now Sparky10
Well DH & I went to see the new doctor and it was interesting to see all the older ladies in the waiting room. He specialises in Egg Quality issues, so obviously mature age women go to him. He was running an hour late but due to the fact he was spending more time with his patients and I was feeling okay about that, I figured if he was taking his time and not rushing like the number you are at the RWH, then that was a good sign.
He explained everything in laymens terms from the start and told me that he wants me to go on DHEA for 3 months minimum before we start another cycle. He said that I have to get it from a special pharmacy at Docklands. He said I have to continue losing weight and look after myself in the next 3 months and then we will do a flare cycle. He said he will do the EPU at the women's to help keep my costs down. Makes me wonder why I didn't go to him sooner. So today I am feeling a little more hopeful, he said to relax for the next three months and he has known people to fall pregnant naturally on DHEA. I really liked him, so if anyone is in Melbourne and looking for a new FS, I would recommend.
Posted 07 June 2013 - 07:36 AM
Amber - that is great news. I'm so glad you have found someone who is going to do everything he can to make this work for you. FX the DHEA is all you need. My FS has also had a number of patients fall PG naturally on it.
Sariele - Good luck for your scan today. I hope you get lots of nice follicles growing.
Have a great long weekend everyone.
Posted 07 June 2013 - 09:53 AM
Hi Everyone, just popping in to say I'm on CD1 of my FET cycle - picked up my puregon and pregnyl today. Here's hoping a six month break, acupuncture, Chinese herbs and yoga can make a difference!! please, please...
Good luck for your scan Sariele and Amber I'm so glad the appointment with your new FS went well.
Hi everyone else
Posted 07 June 2013 - 11:33 AM
Amber - that is so great that you've had a good experience with your new FS. That is how they should all be! I'm so glad you have a plan Are you planning a cycle for September, or just playing it by ear?
MRae - Good luck with your FET. All that good stuff (accu etc) will surely make a difference. Fx!
AFM - I saw my FS today and we finally have a new plan to move ahead. We're going to give it everything to see if we can finally strike a BFP. The plan is to do a stim cycle next cycle with CGH and then a month off and hopefully a FET in August with immune protocol from Dr M. So this week and next is karyotyping and counselling (again *sigh*) and my cycle starts the week after that
Posted 07 June 2013 - 11:38 AM
Hi Dadora - its so nice to have a plan and I have everything crossed for you this cycle. We are planning in September to do another cycle. We should be ready by then and I mean money wise
MRae - woo hoo for the start, hoping this one is it. You couldn't do anymore than you are, so fx its the bounty.
Hi Sparky10 - hope you have a great long weekend too.
AFM: So started taking the DHEA today, poor DH had to do the long trek into the city yesterday to get them for me but got it $184.00 for 3 months which in the grand scheme of things is not that bad really. I am husbandless this weekend, so looking forward to it and spending some quality time with my mum. I plan to relax, eat and relax and eat...lol.
Posted 07 June 2013 - 03:10 PM
Hi ladies, thanks for asking after me. Sorry for no personals at the moment, I've got a bit on right now. Just wanted to let you know that my scan was slightly disappointing today; we looked at my right ovary first and FS and I were very pleased to see about 10 or 11 follies there, but on the left I only had one. I've never had such a bad response from Lefty before, I generally get at least 3 or 4! So despite taking a triple dose of Gonal-F, I still have about the same number of follies as always, which means that unless the DHEA and Saizen have worked some sort of miracle, I look set to have yet another cycle where I only get 7 or 8 eggs, and will be lucky to have 2 fertilise again... I know I shouldn't write myself off yet, but I really thought that I would have more than my usual 12 follies being on 600iu!! Oh well.
Another scan Monday and the EPU probably Wed. Will be back to catch up properly later.
Posted 08 June 2013 - 02:40 PM
Sariele - I know it's hard but try not to get too hung up on your follicle numbers. It's actually a good number. Too many usually indicates poorer quality. I usually only get 4 eggs so would kill for 7 or 8. I know I'm not telling you anything you don't already know but just remember that it's the quality that matters not the quantity. My understanding is that the DHEA is more likely to improve your quality than quantity so even if you get the same number of eggs as usual hopefully you'll get a much better fertilisation rate and they will form blasts. I'm really hoping that is the case for you.
Dadora - great to hear your FS is moving forward. Sounds like you are doing the same protocol as me. I'd be interested to hear what your protocol under Dr M will be. I was tossing up seeing him or Dr Sacks for a second opinion on my NK cells. I went with Dr Sacks in the end and have an appt with him next week. Not sure how helpful he will be but I guess we will see.
Amber - welcome to the land of zits and extra facial hair (although of course I hope the DHEA doesn't have this effect on you). The things we do to get PG!
MRae - good luck. I hope this is your month.
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