Anyone have experience of PGD?

[ThePurpleFairy]

Apologies if this is in the wrong section - I thought it would be most appropriate here as I believe the PGD (pre-implantation genetic diagnosis) process is essentially the same as IVF.

As far as I know I don’t struggle with infertility, I have never yet been pregnant but my husband and I are thinking of TTC next year. The issue is that I have a genetic condition which dramatically increases my chances of developing cancer in my lifetime, with a 50% chance of passing this on to a child. At the time of my diagnosis I was told I would be eligible for PGD, which would mean that a successful pregnancy resulting from the process would be without the genetic mutation.

The rub is that I am absolutely terrified of all things hospital, needles etc. This isn’t your standard phobia, it is quite debilitating - simple blood tests, birth and being put on a ward alone would trigger me. To give background, I don’t have much hospital experience - I have never even had a blood test so it’s probably partly the fear of the unknown (though I do get panic attacks when given injections and have also fainted afterwards before). I’ve briefly looked into the IVF process and I’m just not sure I can handle it, for example even the thought of a catheter makes me want to heave

Basically I wondered if anybody had been in a similar position and gone through PGD, or similarly decided not to proceed and to try and conceive naturally? I’m very conflicted as I would love to stop this mutation being passed through my family, but equally I’m not sure I’m strong enough to do it in this way. I also believe that the chance of a successful pregnancy from the whole process is only about 30%, which adds to my reservations.

Any advice would be much appreciated!

Hi @ThePurpleFairy - my DH has a genetic condition thatbmeams that 50% of embryos will be non viable. We have been TTC naturally and last year had a twin pregnancy which was unaffected by the condition (either of them) but sadly had a late term misscarrige at 23 weeks (unconnected to the genetic issues). I am now just recovering from a MMC - we are waiting for the test results to see if it was caused by the known issues. I am now considering PGD.

We wanted CVS with the twins, but with locations had to wait until amnio at 16 weeks, which was very hard. Obviously, we did then try naturally again.

I am still not sure if we will go down the PGD route.. planning to ask for a referral so we can at least have a discussion, so very interested to know if anyone else has experience.

Thanks for your reply, we have booked a joint GP appointment to ask for a referral. I figure it can’t do any harm to go and have some discussions before making a decision.

They did mention the CVS or another called amniocentesis I think it is called as well but I can only just about manage standard injections, the thought of a beastly needle going into my stomach terrifies me. Also, I don’t know what I would do if we conceived naturally and then they told us that the baby did carry the gene as I’m not sure the genetic defect is that bad it would warrant a termination - I am not disabled in any way shape or form, I just need cancer screening every 2 years and I basically can’t get life or critical illness insurance (which is the particularly shit but still not bad enough to justify aborting I don’t think).

The whole thing is just so complicated, so much to think about! I sympathise with anybody else dealing with this, it puts such a dark spin on something that should be so exciting

I think going for the referral is a good idea. That is what I now plan to do, even though I am not sure if we will go for it.

We know that with our genetic condition any baby would die quickly and so I am confident a termination would (for us) be the right way to go if we had a bad result.

We were booked in for CVS twice with the twins, but due to the location of our separate twin placentas it was not possible. It was hard seeing the babies and not knowing if we would havr to terminate one or both. It was hard waiting to 16 weeks to then have the 2x amnio (one for each baby) However, it really wasn't much more than a standard injection. it was not very painful for scary. The hard part was waiting for the results.

I am also someone who hates doctors and hospitals and being touched, but it is surprising what you can tolerate in these situations.

I am sort of in your situation with the cancer thing, only I haven't been able to get a definitive diagnosis as to whether I have the genes or not (all living relatives have died and so they can't do a mutation match). I was living abroad and they were able to test me for all the known genes so far that cause the condition and I am lucky that I don't have it, however they can't say I am truly negative because there might be a different gene in my family that I can't get matched against.

When I realised that PGD would be an option I decided to get my genetic status tested , even though it makes no difference to my 2 yearly screening protocol as we assume that I have the gene to be safe. I just wanted any baby to be born without having a lifetime of this screening to go through.

As I said, PGD is now not necessary as I don't have a known mutation, however we are now starting IVF for other unrelated issues.

It is a really tough call, but definitely worth getting a referral - I too am dreading needles, but I figure that I have tubes up my ass and down my throat every 2 years, I can handle some sodding needles!!!

Re the life insurance. As far as I am aware, you don't have to disclose genetic tests on life insurance forms, aside from Huntington's I think of course if you have had cancer then that is a different story.

Feel free to PM me if I can help

Realise the above post was confusing. It was when I heard about PGD that I decided to get my genetic status tested, the neg result means that there is nothing to do PGD on, but I still need my screenings.

Hope that makes more sense?

Google IAPT in your area, they.can help you with the phobia. Good luck!

@user1471465987 thanks that definitely makes sense, we are in the same boat by the sounds of it except I have a confirmed mutation. The thing with life insurance is I don’t even tell them about the test but as soon as they ask about family history that’s it they basically won’t cover for any cancer. Presently I have cover through work which I have increased to the maximum as they never asked any questions but I don’t know what would happen if I moved jobs!

@AliceScarlett thank you, I have already been through IAPT, 18 months of CBT and I’m still pretty much the same, marginally better but still climb the walls when in a hospital or when approached with needles - I’m a definite flight risk!

Are you in the UK? It seems odd that you are getting no coverage at all as you are not actually sick, or have not been sick. My family history is pretty dire and I am definitely covered ok. I am not sure whether I disclosed my result as it is favourable (is). Go via a good insurance broker rather than doing it online yourself and also speak with Macmillan or CRUK who will be able to point you in the right direction. I know people who have been insured after having been sick (they just had to wait a few years for the condition to be included in cover) so I find it odd that there is nothing for you at all...(not meaning to sound judgy or disbelieving, as it's all totally rubbish) Our broker found us a better deal than we could ourselves.

I have some medical anxiety , but I do have anxiety and OCD so am aware of how you are feeling a bit (with me other things trigger it) but I try to pretend I am already a parent and need to set an example to my kid... so pathetic but sometimes it works...

Good luck! In my limited experience of IVF so far, everyone is super sympathetic and really gentle so hopefully they will put you at ease a bit.