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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Starting IVF with PGD and looking for support

3 replies

The3rdWatermelon · 19/10/2019 14:58

I don’t know if this is the right place to post. As far as I know we don’t have fertility problems, as we haven’t tried to conceive naturally, but I could do with some support as we’re starting IVF with PGD and I feel spectacularly shit at the moment. My husband is 30. I’ll turn 31 next month.

I have a very rare neurological condition, which is very painful, linked to strokes, and has a 50% chance of being passed on to any children I have. Neither of my parents have it. I’ve managed to spontaneously mutate it myself before I was born, because I’m a real winner. My husband and I have already agreed that we can’t risk having a child naturally because of the chance of passing on my condition.

In order to have the genetic testing, we will have to have ICSI as well. We’ve just had the basic fertility tests and the meeting in which they tell you everything that could possibly go wrong from start to finish (the testing adds in further chances for everything to go wrong, and they have to find an embryo which has inherited the gene for my condition, for comparative purposes, before they can proceed with any others). My husband is absolutely fine, well above average, just perfect. I have one “excellent” ovary and one that’s so scarred and shrunken and twisted around behind my uterus that the doctor asked if I was sure I’d never had major abdominal surgery. I don’t know how this happened. I’ve never had any kind of infection or anything like that, no surgery, nothing. I had regular tests in my teens before my husband and I were together. I’ve never had any signs of anything being amiss. My husband has been nothing but supportive, but I feel so awful for putting him through this shit, with no guarantee of success, when everything that’s wrong is down to me.

To be able to start this process, I’ve had to start weaning myself off my usual medication. I normally take a statin, a blood thinner and an antidepressant to combat the migraines caused by my condition. I’ve discussed it with my neurologist, and I’m now on just a low dose of aspirin, but I’m still in the withdraw phase from the antidepressant, and I feel bloody awful. Headaches, muscle pains, violent temperature changes - one minute I’m burning up and shivering, the next I’m cold and drenched in sweat. I’ve taken the weaning off slowly, but if anything it just seems to have drawn out the suffering!

I’ve told my two best friends about what’s happening, but having kids is a sensitive subject for both of them, for different reasons, and I don’t want to lump my issues onto them.

Also they say things like “my dog’s secretary’s third cousin’s barber’s auntie nine times removed had four rounds of IVF and it didn’t work, then she conceived naturally once they stopped trying!” I do not want to hear this. I cannot risk conceiving naturally and passing on this much pain to a blameless child. Your story is worse than useless to me (not that I said that out loud!).

We are currently allowed three rounds funded by the NHS, for which I’m incredibly grateful, but god I’m frightened!

I could really do with something positive from someone who has experienced similar, where I can read it at my own pace and no one can see me having a good cry. I’m sorry if this isn’t the right place to ask.

OP posts:
ST252 · 30/10/2019 22:21

Hi @The3rdWatermelon x

I am currently on my second round of PGD IVF because my husband has a genetic heart condition that we don't want to pass on. We were not successful in getting any unaffected embryos from the first round and have 1 embryo from the second round which is due to be transferred around the first week in December.

Although it was difficult when the first round was unsuccessful, our care has been second to none and other than just bad luck, we have had a really positive experience.

I'm happy to answer any questions you might have as I'm becoming a bit of an expert at the process now! X

The3rdWatermelon · 02/11/2019 20:26

Hi @ST252, thank you for your reply, and good luck for the transfer.

It's good to know I'm not alone, and that your experience has been positive so far. Everyone we've dealt with so far has been really kind and really helpful, but of course no one can answer the question I really want to ask: is this going to work?!

Do you mind me asking how long it has been since you started the process?

OP posts:
ST252 · 03/11/2019 14:20

It's so frustrating isn't it! We went for our initial genetics referral in November 2017 so it's taken a while.

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