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I am so hurt and sad (xposted)


Forum: Trying to Conceive with Medical Assistance

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  #1  
January 17th, 2012, 07:52 AM
sweet.hun's Avatar We're Complete <3
Join Date: Jan 2006
Location: Dover, DE
Posts: 7,396
I just got back from my next step consult with my fertility specialist.

The news was not very good.

I have a genetic mutation that is causing the miscarriages. Apparently we are playing russian roulette TTC on our own because they said about 90% of natural conceived pregnancies (if we conceive...the gene also causes issues with fertilization) will end in a miscarriage. The gene mutation makes it so that when my eggs split, the genes get placed in the wrong order and cannot continue to grow.

The only way to fix it is to do IVF with genetic testing on the embryos. Basically, they take the eggs out of me, join DH's sperm with them, and once they split they take biopsies of all the eggs and do gene testing to figure out which ones split normally without the mutation, and the ones that do they keep, the ones that are abnormal they throw away. And then a month later I get them inserted into my cervix and hope that one or two take.

It's about $20,000 without coverage. I'm at a total loss for words and want to stop ttc immediately since I have such a high chance of miscarrying. 90%?! That's just mind blowing.

We definitely don't have the money for this. I'm so shell shocked right now. I did not expect this news when I walked in to the appointment this morning. I've been crying ever since I got home because I don't think Jesse is going to want to spend that much money just to have a baby. I would do anything to be a mother, but I'm just not sure what Jesse is going to think about it. My heart hurts so much right now.
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Always missing my 3 angels. 2/9/06, 3/12/11, 5/22/12

Last edited by sweet.hun; January 17th, 2012 at 07:57 AM.
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  #2  
January 17th, 2012, 08:02 AM
Veteran
Join Date: Aug 2011
Posts: 165
OMG I am so sorry! I def praying for you and your DH. I do however know the feeling of bad news at the RE. We were told without IVF we at a 2% of conceiving on our own. I have had 2 miscarriages in the last 3 years both from heavily fertility treatments. If you need to vent or talk just PM anytime.
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  #3  
January 17th, 2012, 08:13 AM
kayakr's Avatar Persuaded by POAS’ers
Join Date: May 2011
Location: Midwest
Posts: 3,742
I am so sorry you didn't get great news. It is really hard to hear bad results and that something is wrong. I completely understand.

That genetic testing just might be your answer though. All the doors aren't closed for you. I know the money is crazy. We are faced with the same thing. IVF/ICSI/Donor Egg so I understand. Give your DH some time because he will be in sticker shock too. Maybe after a few months you guys will be able to make a decision to move forward and give it a try. You take the time you both need to heal and come up with a good plan that works for you both.

Again - I am so sorry you are hurting right now..
__________________
Gretchen
Me (43) DH(33) 12 years together - ttc our first together-I have 14yr old DS
Cycles 1-6 = BFN
Cycle 7 SA results abnormal morphology 2%, 50 mg clomid = BFN
Cycle 8 sonogram normal 50 mg clomid + trigger = BFN
Cycle 9 SA results abnormal morphology and motility. Count 200 mill, 100mg clomid + trigger = BFN
Cycle 10 natural = BFN
Cycle 11 hsg tubes clear, natural + trigger+IUI = BFN
Cycle 12 repronex + trigger + 2 IUI = BFN
Cycle 13 natural ovaries to stimulated for more meds = BFN
Cycle 14-22 natural cycle with Acupuncture and planning ivf/icsi/DE = ALL BFN
Cycle 23 Clomid 50 mg & Progesterone = BFN
Cycle 24 Natural = BFN
Cycle 25 BCP, SA result 7% morphology = BFN
Cycle 26 BCP and Lupron preparing for IVF
Cycle 27 IVF Acupuncture, DE Retrieval April 7, Transfer April 12 =
7 eggs retrieved, 3 fertilized, 2 transferred - zero snow babies
BETA # 1 16DPO or 11dp5dt = 569
BETA # 2 19 DPO or 14dp5dt = 1078
BETA # 3 22DPO or 17dp5dt = 2414 TWINS!
BETA # 4 30DPO or 25dp5dt = 12,685 6weeks 3days 2 heartbeats! 114 & 116
Clayton and Colton Born @ 34 weeks 11/22/13
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  #4  
January 17th, 2012, 09:04 AM
sweet.hun's Avatar We're Complete <3
Join Date: Jan 2006
Location: Dover, DE
Posts: 7,396
Quote:
Originally Posted by kayakr View Post
I am so sorry you didn't get great news. It is really hard to hear bad results and that something is wrong. I completely understand.

That genetic testing just might be your answer though. All the doors aren't closed for you. I know the money is crazy. We are faced with the same thing. IVF/ICSI/Donor Egg so I understand. Give your DH some time because he will be in sticker shock too. Maybe after a few months you guys will be able to make a decision to move forward and give it a try. You take the time you both need to heal and come up with a good plan that works for you both.

Again - I am so sorry you are hurting right now..
Thanks hon. I'm so the type of person that is like "Ok, let's do it right now!" And I know Jesse will definitely have a lot of sticker shock once he actually decides to read his email (he's at work and I dont know his military land line number) so we may be waiting a while until we feel comfortable going ahead with it. I know how stubborn he is and will want to take that 10% chance and try to get pregnant naturally, but I jut can't keep having miscarriages. They are just too painful.
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  #5  
January 17th, 2012, 09:15 AM
ccartanddesign's Avatar With Faith
Join Date: Dec 2010
Posts: 997
I think Gretchen is right - give yourselves some time to take in this devastating news and to deal with the emotions. Then when you're ready talk about options.
I'm so sorry you have to go through this.
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Me-38 DH-38. TTC #1 since August 2009
2/2011 - IUI + Femara + HCG trigger and Progesterone injection BFN
3/2011 - IUI + Femara + HCG trigger and Progesterone injection
4/2011 - not doing IUI - DH out of town
5/2011 - IUI with Femara and HCG trigger. In hospital due to infection from IUI.
Took a break from all meds this summer.
9/2011: - Start with new RE - testing begins.
10/2011: - Hysteroscopy - determine tubes are blocked.
10/2011 : - Laparoscopy - clip blocked tubes, determine right ovary is adhered to pelvic wall, cut adhesions
11/24/2011: IVF cycle #1 begins. Start stims.
12/2/2011: End stims. HCG trigger.
12/4/2011: Egg Retrieval. 9 eggs, only 1 embryo.
12/7/2011: Transfer.
12/20/2011: IVF #1 failed.
1/16/2012: IVF #2 first scan
"Humanly speaking, it is impossible. But with God everything is possible." Matt. 19:26
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  #6  
January 17th, 2012, 09:19 AM
mistletoe's Avatar Mega Super Mommy
Join Date: Dec 2011
Posts: 1,248
I am so sorry that you are facing such unexpected and difficult news. I don't have enough experience to offer sage advice (but the other ladies here certainly can), but I wanted to let you know that my thoughts are with you during this difficult time.
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  #7  
January 17th, 2012, 11:14 AM
Mega Super Mommy
Join Date: May 2011
Location: Chicago!
Posts: 2,423
Oh no, I am so sorry you got bad news at the RE. But try to stay positive as best you can. You know what is causing the miscarriages now, and there is an option. I know the cost is scary as hell, but save up for 6 months or a year, be stingy with your cash and before you know it you will have a good chunk saved up to do this. I hope you and your DH can come to terms with it all and give yourselves time to figure out what to do.
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Angel Twins 5/23/14 (at 7 weeks 2 days)



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  #8  
January 17th, 2012, 12:01 PM
MandyEllen's Avatar Mega Super Mommy
Join Date: Aug 2010
Location: New Jersey
Posts: 1,448
I'm so sorry to hear that news for you, Shasta! I am praying and hoping that the 10% chance of a good sticky baby happens for you when you least expect it. Don't give up hope. My friend (who went through infertility treatments to get her one daughter) told me to never lose hope! Hope is sometimes all we have!
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Mandy (34)
6/29/13 - transferred 2 embryos
7/10/13 - 14 dpo beta=300
7/12/13 - 16 dpo beta=825
7/19/13 - 23 dpo beta=18,870
7/26/13 - 30 dpo beta=72,091


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  #9  
January 17th, 2012, 12:30 PM
kayakr's Avatar Persuaded by POAS’ers
Join Date: May 2011
Location: Midwest
Posts: 3,742
Hope is what we have. There are many women holding their "Hope" babies right now.

Maybe you can make sure your DH understand how bad the loss is when you have a mc. Sometimes people don't understand and even though he is your DH, maybe he doesnt' understand exactly how hard it is on you. I am sure you try and stay strong most of the time which masks the devestation you truly feel with a loss. I think no matter what you have to heal from the loss of your babies first. Once you do that things will become more clear.

I know you feel broken - please don't. You're not. There is still a chance you can conceive all on your own and your baby be perfect.

Super big hugs to you !! I hope you feel better soon. You are not alone though and we all understand the panic you feel right now.
__________________
Gretchen
Me (43) DH(33) 12 years together - ttc our first together-I have 14yr old DS
Cycles 1-6 = BFN
Cycle 7 SA results abnormal morphology 2%, 50 mg clomid = BFN
Cycle 8 sonogram normal 50 mg clomid + trigger = BFN
Cycle 9 SA results abnormal morphology and motility. Count 200 mill, 100mg clomid + trigger = BFN
Cycle 10 natural = BFN
Cycle 11 hsg tubes clear, natural + trigger+IUI = BFN
Cycle 12 repronex + trigger + 2 IUI = BFN
Cycle 13 natural ovaries to stimulated for more meds = BFN
Cycle 14-22 natural cycle with Acupuncture and planning ivf/icsi/DE = ALL BFN
Cycle 23 Clomid 50 mg & Progesterone = BFN
Cycle 24 Natural = BFN
Cycle 25 BCP, SA result 7% morphology = BFN
Cycle 26 BCP and Lupron preparing for IVF
Cycle 27 IVF Acupuncture, DE Retrieval April 7, Transfer April 12 =
7 eggs retrieved, 3 fertilized, 2 transferred - zero snow babies
BETA # 1 16DPO or 11dp5dt = 569
BETA # 2 19 DPO or 14dp5dt = 1078
BETA # 3 22DPO or 17dp5dt = 2414 TWINS!
BETA # 4 30DPO or 25dp5dt = 12,685 6weeks 3days 2 heartbeats! 114 & 116
Clayton and Colton Born @ 34 weeks 11/22/13
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  #10  
January 17th, 2012, 02:38 PM
*JenJen*'s Avatar impatiently waiting
Join Date: Aug 2008
Location: west, but east. south, but not north.
Posts: 7,753
I'm so sorry Shasta. When we looked at the sticker price for IVF with ICSI and PGD and TESE(what two RE's have recommended for us) and no coverage, we literally cringed and took it off the table. We're slowly starting to consider it more, but it's going to take a while for us to save up for it and wrap our heads around it. I hate that the military doesn't cover a single cent of IVF
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My Blog
2006-2013 6+ years of NTNP, TTC, TTCMA, Losses, Surgeries, and Diagnoses.
RPL and Genetic Tests came back 100% normal | Endo, PCOS, severe MFI
Multiple early losses between 3 and 8 weeks.

Broken in heart, mind, and body. On a break until Summer 2014






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  #11  
January 17th, 2012, 08:26 PM
sweet.hun's Avatar We're Complete <3
Join Date: Jan 2006
Location: Dover, DE
Posts: 7,396
Me too. It's just so weird that they won't cover a single bit of it. We would get individual insurance to help pay for it, but really I have no clue where to start or what insurance would cover infertility up to a certain %.

And of course Jesse said to me "Well in 3 years we will probably have enough to do IVF." /cries

In the mean time I think I'm going to go in and get a Mirena IUD. I know that there is that small % that we could get pregnant and have the egg split normally, but I don't know if I'm willing to take that chance and then be stressed the entire first trimester wondering if I'm going to miscarry or not. This decision breaks my heart, but I don't want to live in fear every month. j

I've cried so much today I can't even believe it. I'm to the point right now where it's like I have no more tears left to shed. And now I'm freaking out because AF was supposed to be here today...and so far she's a no show. Hopefully she's just planning her grand entrance for tomorrow or something.
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Always missing my 3 angels. 2/9/06, 3/12/11, 5/22/12
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  #12  
January 18th, 2012, 01:25 AM
Kobain's Mommy's Avatar Future A&M Aggies Mommy
Join Date: Jan 2007
Location: North Dakota
Posts: 2,585
Did they give you a name for what it is? There are a few of us on here that have to deal with Balanced Chromosomal Translocation. My DH has it, and Kiwi that used to be on here has it as well. I know for us we were told donor sperm/IUI or IVF with PDG were the only way we'd have kids. We were devastated. But we talked with the other RE in the practice and the geneticist both said we are at a high MC rate and run the risk of kids having BCT as well but they didn't see why we wouldn't be able to have kids. We are on TriCare as well so IUI and IVF were out for us. We have two children after the first RE said we'd not have any if we didn't do IUI or IVF. Our DS has BCT but our daughter doesn't.
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  #13  
January 18th, 2012, 05:40 AM
kayakr's Avatar Persuaded by POAS’ers
Join Date: May 2011
Location: Midwest
Posts: 3,742
The decision is yours, but with BCP, you'll miss out on the chance of having that healthy baby you want without IVF. I think you should think about it first before you go have IUD placed. Give yourself some time to heal from this news, to heal from your losses so you can make good decisions not just based on emotion. I am sorry you are hurting, I truly am. I would hate for you to be my age (41) though and look back and regret that you didn't keep trying.
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Gretchen
Me (43) DH(33) 12 years together - ttc our first together-I have 14yr old DS
Cycles 1-6 = BFN
Cycle 7 SA results abnormal morphology 2%, 50 mg clomid = BFN
Cycle 8 sonogram normal 50 mg clomid + trigger = BFN
Cycle 9 SA results abnormal morphology and motility. Count 200 mill, 100mg clomid + trigger = BFN
Cycle 10 natural = BFN
Cycle 11 hsg tubes clear, natural + trigger+IUI = BFN
Cycle 12 repronex + trigger + 2 IUI = BFN
Cycle 13 natural ovaries to stimulated for more meds = BFN
Cycle 14-22 natural cycle with Acupuncture and planning ivf/icsi/DE = ALL BFN
Cycle 23 Clomid 50 mg & Progesterone = BFN
Cycle 24 Natural = BFN
Cycle 25 BCP, SA result 7% morphology = BFN
Cycle 26 BCP and Lupron preparing for IVF
Cycle 27 IVF Acupuncture, DE Retrieval April 7, Transfer April 12 =
7 eggs retrieved, 3 fertilized, 2 transferred - zero snow babies
BETA # 1 16DPO or 11dp5dt = 569
BETA # 2 19 DPO or 14dp5dt = 1078
BETA # 3 22DPO or 17dp5dt = 2414 TWINS!
BETA # 4 30DPO or 25dp5dt = 12,685 6weeks 3days 2 heartbeats! 114 & 116
Clayton and Colton Born @ 34 weeks 11/22/13
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  #14  
January 18th, 2012, 06:55 AM
sweet.hun's Avatar We're Complete <3
Join Date: Jan 2006
Location: Dover, DE
Posts: 7,396
I thought about it more last night and don't think I'll go with Mirena. I was in a really really bad place yesterday after the news. I'll mention it to Jesse about still TTC naturally, I'm just really scared of that 90% miscarriage rate. The doctor didn't tell me exactly what it is called, but I'm going to call them today so I can get a copy of all of my records from them. I'm going to get a genetics consult so I can learn a bit more about what is going on. Also apparently I have some sort of single MTHFR mutation as well but he wasn't concerned about it and didn't tell me what mutation it was. I did some research last night and apparently with MTHFR certain mutations require you to be on Heparin while pregnant, so I definitely want those medical records.
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  #15  
January 18th, 2012, 06:56 AM
*JenJen*'s Avatar impatiently waiting
Join Date: Aug 2008
Location: west, but east. south, but not north.
Posts: 7,753
Quote:
Originally Posted by sweet.hun View Post
Me too. It's just so weird that they won't cover a single bit of it. We would get individual insurance to help pay for it, but really I have no clue where to start or what insurance would cover infertility up to a certain %.

And of course Jesse said to me "Well in 3 years we will probably have enough to do IVF." /cries

In the mean time I think I'm going to go in and get a Mirena IUD. I know that there is that small % that we could get pregnant and have the egg split normally, but I don't know if I'm willing to take that chance and then be stressed the entire first trimester wondering if I'm going to miscarry or not. This decision breaks my heart, but I don't want to live in fear every month. j

I've cried so much today I can't even believe it. I'm to the point right now where it's like I have no more tears left to shed. And now I'm freaking out because AF was supposed to be here today...and so far she's a no show. Hopefully she's just planning her grand entrance for tomorrow or something.

*hugs* You can always PM me if you want to talk privately as well.
I'd hold off on the IUD for a few months at least, let this news settle on you and see where you stand once it's a little less raw and fresh.
I hate the military's stand on infertility and I can't wait until we can get some civilian coverage, but nowhere near here offers it as a work plan and an individual plan is too expensive for us at this point.
__________________

My Blog
2006-2013 6+ years of NTNP, TTC, TTCMA, Losses, Surgeries, and Diagnoses.
RPL and Genetic Tests came back 100% normal | Endo, PCOS, severe MFI
Multiple early losses between 3 and 8 weeks.

Broken in heart, mind, and body. On a break until Summer 2014






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  #16  
January 18th, 2012, 07:53 AM
kayakr's Avatar Persuaded by POAS’ers
Join Date: May 2011
Location: Midwest
Posts: 3,742
I am glad you feel a little better today, even it it's just a little. We know how you feel and you're not alone.

90% chance is scary. Anyone in your situation would also be scared specially with already experiencing a loss. 10% chance means there is still a chance though.

Hugs girlie!
__________________
Gretchen
Me (43) DH(33) 12 years together - ttc our first together-I have 14yr old DS
Cycles 1-6 = BFN
Cycle 7 SA results abnormal morphology 2%, 50 mg clomid = BFN
Cycle 8 sonogram normal 50 mg clomid + trigger = BFN
Cycle 9 SA results abnormal morphology and motility. Count 200 mill, 100mg clomid + trigger = BFN
Cycle 10 natural = BFN
Cycle 11 hsg tubes clear, natural + trigger+IUI = BFN
Cycle 12 repronex + trigger + 2 IUI = BFN
Cycle 13 natural ovaries to stimulated for more meds = BFN
Cycle 14-22 natural cycle with Acupuncture and planning ivf/icsi/DE = ALL BFN
Cycle 23 Clomid 50 mg & Progesterone = BFN
Cycle 24 Natural = BFN
Cycle 25 BCP, SA result 7% morphology = BFN
Cycle 26 BCP and Lupron preparing for IVF
Cycle 27 IVF Acupuncture, DE Retrieval April 7, Transfer April 12 =
7 eggs retrieved, 3 fertilized, 2 transferred - zero snow babies
BETA # 1 16DPO or 11dp5dt = 569
BETA # 2 19 DPO or 14dp5dt = 1078
BETA # 3 22DPO or 17dp5dt = 2414 TWINS!
BETA # 4 30DPO or 25dp5dt = 12,685 6weeks 3days 2 heartbeats! 114 & 116
Clayton and Colton Born @ 34 weeks 11/22/13
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  #17  
January 19th, 2012, 11:09 AM
Pregnant with #2
Join Date: Apr 2011
Location: Boston
Posts: 1,374
I am so sorry *hugs*. I would definitely find out the names of these things so you can do some research on your own as well.
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  #18  
January 19th, 2012, 02:15 PM
Kobain's Mommy's Avatar Future A&M Aggies Mommy
Join Date: Jan 2007
Location: North Dakota
Posts: 2,585
Don't make any decisions until you talk to a geneticist. The one RE told us that there was no hope, that we would keep having MCs unless we did IUI with donor sperm or IVF with PDG. While a BCT can be had and those things are needed most aren't and they are more common than people think as the geneticist told us. With DH's BCT the chromosomes it's on makes it we have a 50% of each pregnancy of a MC, but not the 5% the RE told us.
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