My husband and I are having IVF with PGD because I have a genetic condition with a 50% chance of being passed on. The condition is called CADASIL. It’s a rare condition of the blood vessels in the brain which is linked to stroke and early onset dementia. My condition is de novo; I’ve spontaneously developed it myself before I was born, and no one else in my family is affected.
I’m based at a satellite clinic but have to have procedures done at Guys because of the way the funding works for my PGD testing.
I’ve had one egg collection. 12 collected, 10 mature, but only 4 fertilised and only 2 made it to day 5. Those two are good quality, but because my condition is rare and usually diagnosed in people aged 40+, they haven’t got enough data on cadasil patients to proceed with a negative test. They have to find two embryos WITH cadasil in order to confirm the accuracy of any negative tests. It will take 2-4 months for the results on the two we have frozen. Whatever the results there will be no transfer this time. Any negative ones will be kept frozen until we have our two positive ones confirmed.
We’ve waited three years to get to this point. I’m 32.
This weekend my cousin and an old school friend have had their second babies. A close colleague has announced his partner is pregnant and he’ll be a dad for the second time.
And here I am with none. I’ve cut out caffeine, I’ve cut down severely on carbs and sugar except for those from whole grains and fruit and veg, I’ve cut out make up, plastic food containers, and nail varnish, I’m taking supplements of vit D, coQ10, pregnacare, omega 3, and I take a low dose of aspirin as all my cadasil medication is incompatible with IVF. I’m normally on atorvastatin, nortriptylene and clopidogrel. I’m exhausted, suffering symptoms of my condition (migraine, dizziness, ‘ice pick’ headaches, anxiety)… I feel like absolute shit. I look like absolute shit.
I’m just really struggling and I can’t see it working. I just can’t. It feels like it’s all going to be for nothing. The more people say “it’ll all be worth it” the angrier I feel because it really really might not be. I don’t know anyone who has been through this in real life, and when I posted on a Facebook support page someone told me I was wrong about my treatment and that there was no way I’d get a second egg collection. Everyone on the group does supportive posts about how EC was a breeze but I have an ovary twisted behind my uterus and all my pre-EC scans were hideously painful and after EC I struggled to walk for 4 days with the pain. I feel so alone. I feel like something is wrong with me. My husband is really supportive but he’s working all hours at two jobs to save up in case we need £10,000+ to try again after our 3 funded rounds.
I don’t even know what I’m posting for, just that I’m sitting in the bath crying because it’s so much harder than I thought it would be and I feel like it’s my fault. Like I’ve not tried hard enough or my condition is some kind of weakness in me.
I’m sorry this is so long.