Hi šš¼ Ive never posted on a forum in my life so please bare with me, my husband and I have generally kept our past 5 year journey very private but itās now come to the stage Iām anxious to hear other peopleās experiences who have been or know of someone been through something similar.
Our journey so far in a nutshell - after 5 years of TTC and 3 miscarriages, countless blood tests, scans and consultations at our local Aberdeen fertility clinic over the past 2 years, we have been given the conclusion of a few problems between both my husband and I leading to our infertility. These being for myself, I have been diagnosed with an under active thyroid, Anti phospholipids syndrome, a heart shaped uterus, a 4mm cyst on my left ovary and endometriosis. For my husband he has been diagnosed as having a chromosomal abnormality called balanced translocation. So between the 2 of us it has explained a lot of the WHY? questions we have asked over the past 5 years of our TTC journey.
So as of where we go from here, we have been referred to Glasgow royal infirmary for IVF with PGD as our local clinic does not offer this. Because we have already had a diagnosis for our infertility, my question lies as to what to expect next?
How long should we expect to wait?
If the IVF journey longer with PGD?
And many other questions that will take too long to list.
Any information or advise on our next past of this journey would be greatly received!
Please send good vibes our way šš¼
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xMoex
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I'm afraid I can't help with any of your questions but good vibes I can definitely do!! Wishing you all the best of luck for a speedy and successful IVF journey xxx
Sorry to hear of your struggles & losses, I cant help as I havent been through PGD but wanted to welcome you to the site. There is one lady on here that had success with PGD and she may be able to help as she's been good advising other and helping others out in this situation, she's still an active member although got her BFP although not with Glasgow.... Lizzielizzielizzie . Best of luck with it all!xx
Hi xLRx, we are also having IVF with PGD. The journey is longer as they need to test the embryos once they get to day of 5 of development. They have to get them to day 5 in order to take a very small DNA sample, they then get frozen. We are currently waiting for our genetic results. Due to our condition been sex related our samples have to be sent to America so I guess might take a little longer. I don't know enough about your condition so I can't comment on the results time ours is 2-3 weeks.... everything else is the same egg collection and egg transfer. Hope this help xx
Aww thank you! It amazing me how everyoneās journeys are so different yet have so much in common! Sending love to you and yours! Itās so reassuring to have these positive words in your head when your nervous about everything thatās going on x
Hiya, I donāt really have the answers to any of your questions but just wanted to say hi and welcome you to the forum. We are also under the care of Aberdeen fertility centre. Iām glad that you have a diagnosis and that you have been referred elsewhere for the relevant treatment xxx
Hi šš¼ Oh really, we honestly hand on heart canāt fault Aberdeen for all they have done for us and helped us get to this stage! Again I send lots of positive vibes your way!x
Out of interest, did your diagnosis come following recurrent miscarriage testing? We recently had that bloods done in Aberdeen but were told we might have a bit of a wait for results. I also have thyroid problems xx
Hi, they diagnosed all my issues in the initial blood test investigations after 2 miscarriages then we had our 3rd miscarriage half way through the process to which they promptly sent us for genetics testing due to recurring miscarriage issue to which we discovered my husbands balanced translocation. We waited about 8 weeks is I remember rightly for the results of the genetics blood results. Itās all a waiting game but we just understand thatās what it was an just had to be patient x
Yeah, they told us around 6 weeks, possibly longer due to the festives. Will be worth the wait if they can detect something that they can work with/treat x
Before starting your ivf with pgd I would strongly recommend that you get the issues with yourself sorted out as far as possible so you are able to produce as many eggs as possible and also sustain a pregnancy. You could do this whilst you are on the waiting list to start treatment (Iām in England and I started treatment about six weeks after my funding was approved but I chased a lot to make sure I was not being forgotten). It is a different funding system in Scotland though so I canāt advise on that.
In the meantime, my hubbie took a supplement called condensyl every day, itās quite expensive but we decided that, given only 50% of his sperm are viable, we wanted to make sure they were super sperm! I took ubiquinol to try to ensure my eggs were the best quality they could be, as well as pregnacare max which my consultant recommended. You generally need to be on supplements for three months before you see a difference (sorry if you already know this).
In terms of what you could do-At a guess: You need to see your gp for medication to get your thyroid working properly and maybe see a gynaecologist to find out whether they want to take any action re your heart shaped uterus. Some women have the septum reduced so their uterus becomes more rounded.
Different consultants have different opinions about treating endometriosis but it depends where yours is- hopefully your ivf consultant would be able to advise you whether they need to treat any areas, eg if it is on your ovaries then they might want to treat it before trying to get eggs for egg collection.
If necessary though it could be that this could be an op you could have done once youāve got some viable embryos but before you have them implanted. Or maybe it wonāt be necessary at all.
Any 5 day old embryos you produce during ivf with pgd will be biopsied and then frozen whilst they test the sample. This test took 2 1/2 weeks to come back with results for us. But any viable embryos can stay frozen as long as necessary if you need any treatment to make sure your body is in a good state to receive them and nurture a pregnancy. We were given stats from our genetic counsellor suggesting we would get 1/6 day 5 embryos viable. We had six fertilised eggs but only four made it to biopsy and of those, one was balanced and Iām now 39 weeks pregnant with her. However, the consultant said we had been extremely lucky given that I was 39 and in two previous rounds of standard ivf we had only ever achieved one blastocyst which failed. From reading online, it seems like most people have really random results, I donāt think the geneticists really know enough to make very accurate personal predictions.
There are some closed international Facebook groups about balanced translocation. However, I would caution you that people obviously tend to post more about difficulties than successes so, whilst Iāve found these groups a great source of information, I didnāt actually find them and join until I was pregnant. Iām not sure whether they would have helped me or not whilst I was still trying.
Finally, once they test your embryos, theyāll only be able to tell you if they are viable (balanced) or not. They wonāt be able to tell you whether they carry your husbandās translocation or not. You can generally find out through CVS or amnio but I personally chose not to because thereās a tiny miscarriage risk. So our daughter will have to decide for herself whether to be tested as a young adult because you canāt have your childrenās chromosomes tested here in the UK without a valid medical reason.
Wow! Thank you so much for your advice, itās much appreciated We have managed to regulate my thyroid and have had several scans/blood tests etc done over the past year to monitor and asses cyst/uterus etc which again they are giving the green light too so all I would like to do now is take more self care and I will definitely go and look up some of your supplement suggestions. Iām overwhelmed with all your guys support already, I feel like Iāve tucked myself away and feel a weight has been lifted talking to people who understand! Itās also so nice to know a bit more about the process and what to expect, thank you!x
Iām so glad to hear that youāre being well taken care of regarding the other issues, so now youāve just got the ivf to look forward to! Fingers crossed for a short wait and feel free to message me if you have any more questions x
Wow. You guys š thatās a struggle and a half! I canāt advise on the pgs testing and I was going to suggest Lizzie (I see sheās responded). I hope youāve found some useful support with your post and good luck for the future xx
Hello I just wanted to post to let you know what fantastic care I received in Glasgow. Their staff are so so nice and I felt very well cared for. The Scottish government target is that they want you recieving your first round by nine months so expect a six month wait between referral and your first clinic visit. Wishing you the best of luck xx
Hi šš¼ Oh thatās great to hear, we canāt fault our local service and because we will have to travel over 150 miles to get treatment itās all a bit daunting going into completely unfamiliar territory, thank you for sharing that x
Hi, i am currently at GRI for PGD IVF. Waiting list is longer than normal IVF list, I waited about 13 months from first appointment to start of treatment. You do go in for a few appointments during this time for bloods and paperwork. It is such a long and stressful time waiting and I wish I had known at the start how long it would take. They estimated 6-8 months on the waiting list. Lizzie above has given an amazing reply but feel from to message any questions xx
Hi šš¼ Thank you for being honest, we are used to waiting at our local clinic but Iām aware all centres are different, because we know nothing about GRI and our specialist didnāt know much either it was hard to āhalf planā our year as it was and what to expect without getting our hopes up too soon. Can I ask if all your treatment has been at GRI or was you referred from another hospital? Thank you xx
All my treatment has been at GRI other than my initial genetics appointments which was at the QEUH as I knew I would have to undertake pgd from the beginning. Yeh I have spent all of this year thinking I couldnāt do much and plan anything. You have already done amazing and I really hope they can get you success now they know what needs to be done.
When you are on the waiting list they should be making your genetic test for the embryos and this was around 8 months to be completed which is part of the hold up in getting started. Not sure if I have just been unlucky with timing or my test was more detailed. Iām still under treatment so hopefully 2019 will be out year! X
Ah ok, yeh I know the waiting is the struggle but fingers crossed will be so worth it! Thank you for your advise and I honestly wish you the best on your journey, sending lots of love your way and 2019 will be successful year xx
Just to add to the above, depending on which chromosomes and where that your hubbie has his translocation break points, you may not need a specialist test/probe building. My husbandās breaks are large so did not need an individual test. Hopefully yours will be the same and your wait might be shorter then. Xx
Just wanted to let you guys know that we received our first appointment letter yesterday for the beginning of March next year to meet with our new hospital consultants! It was so unexpected so soon, I was setting myself up for waiting til summer so it was a very welcomed early Christmas present! Role on spring, I feel like weāre wishing the months past but itās impossible not to.
Merry Christmas everyone and enjoy every moment with your nearest and dearest xx
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