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Infertility

IVF with PGD following recurrent miscarriage

69 replies

Pinkandwhite · 31/01/2017 19:20

Does anyone have experience or success with doing IVF and PGD (embryo screening) after recurrent miscarriages? I am currently going through my fourth miscarriage and I have been advised to look at this. If anyone has had any experience with this or has a viewpoint then I would be really interested in hearing about it. Thanks

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Pinkandwhite · 19/02/2017 03:12

Oh and I would say that I am definitely in the minority on that Facebook group. It seems that the vast majority of women on it went through many, many losses before getting a baby or don't have any children at all yet.

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bananafish81 · 19/02/2017 13:13

Unfortunately it is very expensive yes. As well as pretty shady

The matches on the UK surrogacy FB groups work really well - it's absolutely beautiful. But you have to try and cultivate a relationship with a stranger and negotiate a relationship whereby they'll agree to look after your baby for 9 months. It seems very rare for relationships to break down. But the lack of legal protection is a major concern. As well as the emotional difficulties of trying to navigate the process independently. A friend is going through it and it's incredibly stressful from the outset.

But if that's your only way to become a parent, you don't really have much of a choice!

So very sweet of you to offer to help - I'm truly touched. Wish I could wave a magic wand to make it right for us all!

I simply can't allow myself to hope that the next cycle could possibly work. Tbh I'm not allowing myself to even hope that we could make it to transfer without the cycle being cancelled, as I've been here multiple times before. Unless I can get a decent bleed this month, and 8mm and triple line endometrium, I'm not proceedings to a transfer. So could well be that we don't get off the ground at all!

Neupogen is used by Drs like Braverman & Kwak Kim in the US and Gorgy in the UK (and Serum in Athens) for RIF and RM. There's been an RCT in the NHS called the RESPONSE trial looking at G-CSF injections for unexplained RM - results aren't published to the summer. Unlike pred it's not suppressive so works in a different way. So am keen to see what my Dr reckons.

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Pinkandwhite · 19/02/2017 14:45

That's what I wish too. That I could wave a magic wand to make it all better for anyone who is suffering in this way. I read that a very high percentage of women who go through IVF are depressed. I'm not at all surprised. I just can't believe how much surrogacy in the US costs. That is insane. I'm sorry you're in the position of not knowing whether or not you can even do the transfer. That's so crap.

I have come across Dr Braverman and I'm wondering about visiting him... I started reading about Neupogen last night. It's interesting. I don't know where I should turn at this stage. I have had horrific ovulation pains over the past few days which is alarming but at least means I will get my period in a couple of weeks and can then start the various testing. I have arranged a telephone consultation with Raj Rai for this Wednesday and have requested a consultation with one of the professors from the article you shared a link to yesterday.

So what are your coping strategies if any? I find running is my main means of staying on top of my emotions. I feel like I should do yoga and mindfulness stuff but I don't have enough desire to do it so never do it!

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Pinkandwhite · 19/02/2017 14:46

I actually also can't believe you can't even meet your surrogate in those countries until they are 12 weeks pregnant. That is very shady. I would rather risk it in the UK than do that.

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bananafish81 · 19/02/2017 16:30

This summarises it pretty well

www.health.harvard.edu/newsletter_article/The-psychological-impact-of-infertility-and-its-treatment

"One study of 200 couples seen consecutively at a fertility clinic, for example, found that half of the women and 15% of the men said that infertility was the most upsetting experience of their lives. Another study of 488 American women who filled out a standard psychological questionnaire before undergoing a stress reduction program concluded that women with infertility felt as anxious or depressed as those diagnosed with cancer, hypertension, or recovering from a heart attack"

We are just existing, really, not living. Life is just what happens between Drs appointments and scans. I don't really see my friends much as they all have kids and we don't really have a role in their lives as their social lives (understandably) revolve around their mum friends. And when I do see friends I don't have anything to talk about, as the only thing going on in our life is work and fertility treatment. All our money and energy goes on trying to have a baby. At least if we'd been on holiday at some point in the last 2 years we'd have definitely ended up with a holiday! I just feel really very sad and withdrawn - everyone else's lives are moving forward and we're just treading water.

The idea that it's possible to make a baby with some sex is such a quaint and almost laughable concept! The only time we've ever been able to be in with a chance of conceiving is when we've had our two embryo transfers. Ironically this month I've had the IUD out so given we're doing ovulation induction we could hypothetically try naturally this month - except that we're doing endometrial biopsies so can't try, and would be too risky to TTC naturally if I'm ovulating over 6 eggs at once.

My coping strategies aren't that helpful - I focus my energies into trying to become as informed as I can, out of desperation in the hope my research will throw up something useful. So all my mind space is focused on infertility.

I have chronic pain from a spinal injury so take very strong opioid pain meds, plus I have epilepsy, so as I can't drown my sorrows in wine, I self medicate with chocolate.

Except when we start a FET cycle I have to give up chocolate because there's no point taking a higher dose of metformin to reduce the risk of miscarriage related to PCOS, if I then eat a load of sugar!!

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Pinkandwhite · 20/02/2017 14:26

I am so sorry you feel that way. It is completely and utterly understandable. It is so unfair. It drives me crazy that people who don't want or appreciate their children get to have them so very easily whereas someone like you who I am sure will appreciate your child so much, has an absurdly hard time.

How crap that you can't even have a glass of wine. I hardly drink because I prefer chocolate to wine but it's good to able to occasionally. My diet has been bad lately. I comfort eat for sure.

Did you know that there is a Braverman Facebook group where he directly answers people's questions? I found out about it through the recurrent miscarriage group and joined last night. It's really good.

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bananafish81 · 23/02/2017 07:58

Thanks pink

Tbh I doubt miscarriage will be my issue as I can't see that I'm going to be able to get pregnant again ever, as my first scan on Monday for my mock cycle was pretty disastrous, and I'm feeling utterly destroyed - and so foolish for allowing myself to feel hopeful that we had actually made some progress over the last 5 months slog of working on my lining. Well what an idiot am I to allow myself to feel hopeful that maybe things were pointing in a more positive direction.

One step forward and two steps back. Even making it to transfer at all seems so unlikely, let alone a cycle actually working

I've been watching from the sidelines as I've been on contraception, following everyone's journeys forwards - waiting for me to be able to join back in. But I'm going backwards, not forwards. After several months of fabulous lining with the IUD, now we're finally doing a mock cycle, and my lining has gone to total shit.

Did two endometrial biopsies and will get histology at my next scan on Sat. Scanxiety at defcon level 5. Then next biopsy for ERA test a week tomorrow.

Dr said we could definitely try Neupogen injections when we do cycle, although quite when that'll be is anyone's guess. And dunno why the fuck we're even bothering as it's obvs going to be a total waste of time.

Balls to it all.

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Pinkandwhite · 15/02/2019 18:42

I'm just popping back on to this thread to update after another mumsnetter private messaged me to ask what happened in my case in the end. I thought I'd put an update here in case it is helpful to anyone else to know.

I did go for IVF (in May 2017) and now have a 1 year old (born Jan 2019) as a result of that. I still don't know whether it was the IVF or the various drugs I took that pregnancy or just luck which made it work when 4 out of the 5 before hadn't worked. The miscarriage specialist I consulted with told me I had to start taking the medications before a BFP because by the time of a BFP it could be too late. I took herapin, aspirin, progesterone, estrogen and steroids (for the first 16 weeks).

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bluepixie · 16/02/2019 20:50

Did u do pgs too?

I also did ivf with pgs and had a baby after 6mc if anyone else interested

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Pinkandwhite · 16/02/2019 21:12

Congratulations on your baby cream123. The baby I have wasn’t PGS tested as an embryo because we went to Cyprus to do the IVF and I figured that seeing as we were there I may as well have a go at transferring the best looking embryo there and then. We had another 4 embryos that were sent for testing. 3 of those 4 were normal. Were most of your embryos healthy as well cream123?

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BottomleyPottsSpots2 · 17/02/2019 19:56

Thanks for this incredibly interesting thread. I've just miscarried a PGS normal embryo (my 6th loss) and really looking for answers / things to try now...

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bluepixie · 17/02/2019 20:20

So sorry to hear that bottomly it’s so though :(

It’s obviously not a magic cure. I also did immune tx alongside mine. Did u do any? Hope u have some more blasts to try with?

Pink and white. I’m also 34 and had 4 blasts 3 were normal (one baby 2 frozen).

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Pinkandwhite · 17/02/2019 21:03

I’m so sorry to hear that Bottomley. That’s brutal. You really deserve your rainbow baby.

I also took quite a few medications in the hope that they would help. I had all the RM tests done and although none of them revealed an issue, the specialist I saw suggested taking/doing the following from a couple of days before the embryo transfer: herapin injections, progesterone, aspirin, estrogen, steroids + a course of intralipids.

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Pinkandwhite · 17/02/2019 21:07

Cream123, does not knowing what worked with one pregnancy when others didn’t work bother you?

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bluepixie · 18/02/2019 12:34

Yes coz I want to try again and I don’t know wot to go for! Just do a pgs embryo or spend thousands on loads of drugs alongside it (which also make the cycle thougher physically). Either way I’m grateful we got there in the end was a long time coming and very very hard as I’m sure u know.

Bottomley lots of hugs

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Pinkandwhite · 19/02/2019 13:16

Ugh, that’s so hard cream123. Most of my drugs were paid for by health insurance so I didn’t think about the cost of that very much. It’s crazy how much we/medical professionals still don’t know about all of this.

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BottomleyPottsSpots2 · 22/02/2019 17:48

Thank you for the sympathy - I feel like a bit of a fraud now because actually, there seems to be a tiny tiny chance we might be okay and this might not be loss number 6. I suspect I'm at the point where I really jump the gun and assume the worst now. My hcg levels have been as follows (one PGS normal transferred):

8dp 5dt: 151
10dp 5dt: 393 (34 hour doubling)
12dp 5dt: 778 (didn't quite double in 48 hours = I thought doom)
14dp 5dt: 1844 (back to doubling in 39 hours)

I have now stepped away from the betas for the sake of my sanity. I was on the verge of coming off progesterone / estrogen but my consultant has said absolutely not, he is optimistic. I am NOT optimistic but I am going to keep going and just hope, hope, hope. I am now 5 weeks and 2 days (18dp 5dt). Taking 20mg prednisolone, clexane, aspirin, lubion (and cyclogest), estradiol, thryroxine. Cramping like mad - who knows what that means ... ugh. Early pregnancy is the worst.

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Angle786 · 01/07/2019 10:36

Hi

I am having 3rd miscarriage, have one boy and I am thinking that pgs is my last resort to try. I have no issue to get pregnant but to continue the pregnancy is issue. 2 of the miscarriage are under 6 weeks and one was on 8.5 weeks. Any one have any success to use ivf with PGS? Thanks

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Anatrina · 19/07/2019 17:31

@Angle786 have you had the nk cells/ immunology testing as discussed above?

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