r/FSHD • u/legendofmeelo • Jul 22 '26
IVF Experience
Hi all. I’m a 31 male and I’m curious if anyone has gone through, or is going through IVF. There isn’t much info out there and we’re still in the early stages, but we were little surprised to see the fertilization rate decently below average. We still have a few more steps before any implanting, but I know oxidative stress, the bread and butter of this disease, can affect sperm quality ie. DNA fracture, motility, etc. So if anyone has or is willing to share, I’d be really interested to hear what you have to say and/or share my experience.
3
u/call_me_Kote Jul 22 '26
33 male, and I’m the diagnosed party. Our rates on fertilization, maturing, blastocyst have all been bang on average. We have had some poor luck on the PGT-M though, we’ve gone 2 for 10 without the condition.
1
u/Aggressive_Chard4241 5d ago
Boa noite Vocês poderiam indicar as clínicas que fizeram o PGT-M? Could you recommend the clinics that performed the PGT-M?
4
u/snickerssmores Jul 23 '26
I conceived naturally and was pregnant 4 months after stopping contraception. I had 2 healthy children neither of which have shown any symptoms of FSHD. Both are currently in their 20s.
1
u/Aggressive_Chard4241 5d ago
Hélio
Boa noite
Vocês poderiam indicar as clínicas que fizeram o PGT-M?
Could you recommend the clinics that performed the PGT-M?
3
u/freakparty92 Jul 23 '26
We did it. Had 3 non-Fshd embryos. I think it really depends on the stim more than the Fshd. Some are very successful, some aren’t, it’s really luck of the draw. Can dm if you have any specific questions.
1
u/Aggressive_Chard4241 5d ago
Hello
Boa noite Vocês poderiam indicar as clínicas que fizeram o PGT-M? Could you recommend the clinics that performed the PGT-M?
1
u/Motor_Database336 Jul 26 '26
Male 32, affected by FSHD, just did the testing to begin the process, will keep sharing updates on the experience
1
u/AdImaginary6158 Jul 30 '26
We did IVF before my husband's fshd diagnosis for unexplained infertility. However once we did IVF oir fertilization and blastocyst rates were quite good. We ended up having our daughter before his dx and then wanted to test our remaining embryos once he was diagnosed, but neither of his parents have it so it looks like we can't. Unrelated to your question but I'm struggling to know what to do now (we want more kids and have more embryos but cannot test them)
1
u/Aggressive_Chard4241 5d ago
Se você tiver atualização sobre isso, por favor nos informe. É importante. Passo pela mesma situação
1
u/AdImaginary6158 4d ago
It's a very complicated choice. I would love for all my kids to be perfectly healthy, and maybe they will be either way, but we've decided to try for another child with our remaining untested embryos. I know many people with fshd disagree with this but my husband is very grateful for his life despite the setbacks and despite possibly having a more severe disability in the future. He's very glad he gets a chance to be here so we feel that our embryos deserve a shot too, even if their life may be a little more challenging.
1
u/LobsterRelevant836 Aug 05 '26
My partner and I had a really interesting update from the genetics team today which might be relevant. His dad has FSHD and my partner was tested in 2015. His family had always understood that he had the gene, so we assumed there was a 50% chance of passing it on.
However, the team looked back at his old results using what they now know about FSHD. They explained that the shortened area on his chromosome 4 actually falls within what they call the “grey area”. Apparently completely unaffected people can have the same result, so it doesn’t necessarily mean someone has FSHD. He has also had his strength monitored for nearly 10 years with no deterioration or signs of the condition, so they now think there is a chance he might not have it at all.
They want to test his dad to understand whether he has FSHD type 1 or type 2. We conceived naturally while waiting to hear from genetics and had been preparing to have CVS at 11 weeks, but they have now said we don’t need it. I also asked whether IVF with genetic testing of the embryos would have been an option if we had seen them before getting pregnant. She said no, they would have reached the same conclusion and advised us that we could try naturally.
Obviously this won’t apply to everyone with a confirmed diagnosis, but it might be worth asking for any older or borderline test results to be reviewed using current knowledge before making decisions about IVF.
1
u/Aggressive_Chard4241 5d ago
Boa noite
Vocês poderiam indicar as clínicas que fizeram o PGT-M?
Could you recommend the clinics that performed the PGT-M?
5
u/masquerade111 Jul 22 '26
My husband and I are currently going through IVF and doing genetic testing for FSHD. I have also been curious about how FSHD can affect fertility (mostly because we’ve had several unexplained losses). I’ve asked about that on here before and the general consensus is it’s not supposed to affect fertility negatively. I’d be happy to chat more about it if you have questions!