So frustrated with government regulations! (Vent)

Margritli · June 2013

I just found out that all PGD is prohibited in the country that I am living in. We are still waiting to find out what is causing DH's MFI, but if it is caused by a genetic disorder (like Y-chromosone microdeletion), which is a distinct possibility with DH's SA results, this means that we would have to go abroad for IVF. As if this all isn't stressful enough!

Why should a bunch of old bureaucrats be allowed to make these sorts of decisions? Why would a developed western European country not allow PGD to avoid genetic disorders from being passed down to the next generation? Argh! This frustrates me to no end! Sorry, I just needed to vent for a minute there.

JennySC34 · June 2013

I am sorry you are going through this and that your government is blocking your chance for success! Surely they use ISCI and/or PISCI though.

Margritli · June 2013

Sorry, I guess I didn't explain it well enough. IVF with ISCI is not a problem here, but if there is an underlying condition caused by any kind of genetic disorder, then we would not be able to screen the embryos before implantation. It's all spectulation on my part at the moment because we still have to wait for the andrology appointment, testing, and results.

I was just reading this morning about MFI and specifically severe oligoasthenoteratozoospermia (OAT - really, really low everything, which we have) and kept coming across study after study talking about genetic disorders being the cause of OAT.

I know I shouldn't be asking Dr. Google, and I know I should try to take things as they come. It's just so hard at the moment. I want to know what is the problem, so that we can move on. I am so impatient.

I tried to call the therapist to no avail today. If I go crazy, just know that it was my own fault.

firesiren · June 2013

It drives me crazy that anyone thinks they should be able tell infertile people what they can do with their embryos. My DH never had enough sperm for any testing. We ere lucky enough to have 2-3 sperm at any time. How far will you have to go for treatment? Hang in there. ((HUGS))

JennySC34 · June 2013

Good luck! Not having answers or access to the technology you need is frustrating! I'm sending you hugs.

RosyGlow · June 2013

I'm so sorry. It is so surprising out of curiosity, where are you? My sister navigated some laws of genetics while she was living in the Netherlands...let me know if I can help by asking her questions. All in all, they were much more open to terminating an unhealthy pregnancy than to approving IVF for genetic reasons, which always surprised me. I hope that it all works out for you soon.

Margritli · June 2013

We are in Swit.zer.land. (It's stupid, but it's really small here and I don't want anyone trying to find me on TB, doubtful, but could easily happen.) It's one of the only countries in Europe that won't allow PGD. Our issues is severe MFI and one of the possible causes is genetic issues. My DH also had cryptorchidism as a child (undescended testicle), which also has me worried because the RE doesn't think the crytorchidism itself is causing the problem, but it can apparently be a sign of genetic issues, which is why I am really concerned. DH has never been seriously ill or had to take steroids or meds which could have decreased his sperm count so much. I know these things can be unexplained, but our numbers were just so bad and equally bad in all three catagories.

We are going to have to do IVC with ICSI regardless, but if we do have a genetic issue, then we obviously want to do everything we can to have the best possible chance of having a healthy child. For me, that would include PGD even if it means we have to go somewhere else.

I understand that they are worried about gender selection, but I just can't believe that they wouldn't allow it here for people going through IVF with known genetic issues. It doesn't affect us (thank goodness) but donor eggs are also not allowed here - something which totally baffles me and seems arbitary since DS are allowed. It makes me so mad!!!

Our clinic does work with a clinic in Spain for DE cases, so I guess we would find some work-around if it comes to that. I wasn't even remotely thinking that far when we got the DX last week and I didn't realize how severe DH's MFI is or how restricted treatment is here until later. I will ask the RE about this at our next appt., but this isn't until after DH's andrology in mid-August (and after the labs come back and the andrologist forwards them with a report to our RE...ugh, this could take forever).

ETA: Sorry this is so long. I've just been stewing in this all day.

RosyGlow · June 2013

Hi again - wow, what a frustrating ride. These are the same reasons that I am in favor of CHOICE in all areas of health care. As for gender selection, I think it's fascinating that the few who will choose an embryo based on sex ends up driving health care choices for the larger group who will need it...based on genetic reasons. My DH and I just completed our PGD testing (results in siggy) and we have specifically asked NOT to know the gender, because we want to be surprised if we achieve a pregnancy. I'm so sorry that you are going through the "in-between" time where you don't yet have answers but want to know what your options are. I really hope that your RE will continue to consider ALL options with your DH's sperm and reasons why it is so low across all areas. It must be so challenging to be sitting in the discomfort of not knowing what will come next. I hope your August results come with clear answers about next steps. I'll be thinking of you.

RosyGlow · June 2013

Oh, also, in my case, it's especially scary to think that PGD wouldn't be allowed for reasons of gender knowledge. Because I am carrying a sex-chromosome based disorder, it's very important for the embryologists to know the gender of the embryo in order for families to decide if they want to keep carrier embryos (like myself) etc.

solisilou · June 2013

I'm so sorry you have to go through this too. This is all so unfair! I've done some research and there are only three countries in europe that share the same stupid embryo protection laws (Germany, Austria and Switzerland). I can safely say that we really drew the short stick. Here in Germany, no infertility related PGD is allowed and it's also the reason why we're going to the UK for IVF #3. If the law in Switzerland is the same as here, they will also not allow you to do a blast culture of all your embies. The maximum you can let develop are three embryos and all the rest will get frozen immediately after fertilization. It's so frustrating I could scream! I believe a lot of these laws are directly related to the german trauma of World War II, mixing up treating infertility with eugenics, pure race and the likes. Do you have any possibility of crossing the border for treatment in a more "friendly" country? I didn't do it for our first two IVF/ICSI cycles and I'm starting to regret that decision...

Margritli · June 2013

I am completely frustrated, too, not because we are moving forward, but because these regulation limit our options and thereby our chances for success. I am trying to tell myself not to borrow trouble but I am definitely going to ask about this at our next appt. It worries me a lot!

I really hope the law will change soon here. I just saw this today:

https://www.swissinfo.ch/eng/science_technology/Genetic_embryo_testing_gets_cabinet_approval.html?cid=36083104

It would be fabulous if these measures would pass, but they require a vote from the people, so it could be ages until it passes, if at all. I am not too hopeful.

I don't quite understand what this means:

"As regards the practice of in-vitro fertilisation, the law stipulates that not more than three embryos may be cultivated. Impregnated ovules (zygotes) can be frozen for a period of 5 years. After this time, the couple must decide on the fate of the frozen zygotes, which can either be donated for research or destroyed. " (From:https://www.fiv-geneva.ch/en/documentation/swiss-legislation.htm).

Is this the same in Germany? Is it the freezing of the zygotes before development that decreases the chances of them developing into a pregnancy? I guess I am a bit confused on that point. If this is actually the case, perhaps we will look into going elsewhere. The costs in the U.K. are a lot lower.

solisilou · June 2013

Margritli:
I am completely frustrated, too, not because we are moving forward, but because these regulation limit our options and thereby our chances for success. I am trying to tell myself not to borrow trouble but I am definitely going to ask about this at our next appt. It worries me a lot!
I really hope the law will change soon here. I just saw this today:
https://www.swissinfo.ch/eng/science_technology/Genetic_embryo_testing_gets_cabinet_approval.html?cid=36083104
It would be fabulous if these measures would pass, but they require a vote from the people, so it could be ages until it passes, if at all. I am not too hopeful.
I don't quite understand what this means:
"As regards the practice of in-vitro fertilisation, the law stipulates that not more than three embryos may be cultivated. Impregnated ovules (zygotes) can be frozen for a period of 5 years. After this time, the couple must decide on the fate of the frozen zygotes, which can either be donated for research or destroyed. " (From:https://www.fiv-geneva.ch/en/documentation/swiss-legislation.htm).
Is this the same in Germany? Is it the freezing of the zygotes before development that decreases the chances of them developing into a pregnancy? I guess I am a bit confused on that point. If this is actually the case, perhaps we will look into going elsewhere. The costs in the U.K. are a lot lower.

It is word for word the same as in Germany and I do believe that we've lost some embies after thawing because they were frozen so early. It also drives me insane that they just choose which zygotes to cultivate based on very limited information about their quality and I have the feeling they're playing russian roulette with my mental sanity each time we do a cycle. I'm really sorry you also have to deal with these insane regulations...

Margritli · June 2013

Geez, I didn't grasp this before. This sucks...a lot.

I really like the clinic here and the RE, but I think I am going to have to have a serious talk with DH about looking abroad. We are going to have to pay OOP, which is fine, but we do not have endless resources to spend. It has been really hard for me here, and I am not sure that I can handle the emotional roller coaster of the whims of draconian germanic regulation in addition to the emotional burden that IF already is (totally agree with you about this being a complex with their past).

A HUGE hug to you, lady! I am so sorry that you have had to deal with this all, but I am really thankful for the information and insight that you can provide. I really hope that the switch to London is what makes it happen for you!

JennySC34 · June 2013

solisilou:
I'm so sorry you have to go through this too. This is all so unfair! I've done some research and there are only three countries in europe that share the same stupid embryo protection laws (Germany, Austria and Switzerland). I can safely say that we really drew the short stick. Here in Germany, no infertility related PGD is allowed and it's also the reason why we're going to the UK for IVF #3. If the law in Switzerland is the same as here, they will also not allow you to do a blast culture of all your embies. The maximum you can let develop are three embryos and all the rest will get frozen immediately after fertilization. It's so frustrating I could scream! I believe a lot of these laws are directly related to the german trauma of World War II, mixing up treating infertility with eugenics, pure race and the likes. Do you have any possibility of crossing the border for treatment in a more "friendly" country? I didn't do it for our first two IVF/ICSI cycles and I'm starting to regret that decision...

OMG! I didn't realize you guys would have to deal with this kind of thinking in Europe! I felt for sure America would be behind but I guess we're not! Good luck and cross that border!

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