How to cope and keep positive (long post)


#1

Hello ladies,
I am a frequent poster on this board, but for all who don’t know my history here is a quick re-cap. At the age of 21 I was disgnosed with Stage 4 endo, I was riddled with it (all over tubes, bowels, intestines, ovaries and outside of uterus). At 26 I got married and me and my DH sought out an RE to start with IVF to start a family. I started seeing an RE, went through my first IVF cycle, transfered 1 blast and 1 9cell grade B…:bfn: . Was told I had hydro in both tubes but that was not a concern. Did research and decided to switch RE’s and started seeing an immunology RE. Was told hydro is a cause for concern and through new RE’s recomendation and 2 other opinions decided to have both of my tubes removed. Had immunology b/w done and found I had elevated NK cells. On to IVF #2 had 16 eggs retrieved but DH had no sperm (he has what they call intermittent sperm, sometimes there sometimes not? No cause identified) All 16 EGGS frozen. FET #1 (Mtese retrieved plenty of sperm) out of 16 eggs only 5 survive thawing and 3 fertilize. By Day 2 only one is surviving, had 2dt of 4cell grade A…:bfn: . IVF #3- 14 eggs retrieved, 11 fertilize, all set for 5dt and BAM! Hurricane Irene blows in, have to do 3dt, put back 1-8cell and 2-6cell Grade A embryos,( 8 frozen embabies on day 3)…:bfn: . RE believes we are dealing with an implantation issue, adding Lovenox to meds and new and rarely used drug for IVF called Neupogen. Fet #2, 4 frosties thawed out and allowed to grow to Day 5, 3 make it to blast, 5dt of all 3 blasts…:bfp: ! This was my first :bfp: EVER. My Beta’s were all doubling and things were looking up. Then at 17dp5dt I started having some mild cramping, went to the b-room and had some light pink bleeding when I wiped so called RE to come in for an early u/s. By the time I got to the office (appx. 3 hrs later) the bleeding had gotten a little heavier (not as heavy as my period). Had the u/s done and saw a sac, yolk, early stage of fetal pole. Was assured everything looked good (right on track). When I left the office still nervous but not as worried I noticed by that night the bleeding had turned to a small amount of brown staining. Woke up the next morning and a little light pink when wiped, but then immediately turned to very little brown staining again (no cramps since the morning before and no clotting). By the next day, no more brown or pink… nothing at all. Was so relieved and now I was just waiting for my next u/s in 5 more days. Go in for my 2nd u/s this past Monday (24dp5dt) and as Im sitting waiting in the room, me and DH are joking and laughing… we are so excited. BIG MISTAKE… RE does u/s and there is nothing there!!! No sac, no nothing. I have miscarried… beta test confirms my levels have dropped to 6. RE asks if after he had seen me if I had any heavy bleeding or cramping or clots, I told him no not at all (even on my heaviest bleeding day, the day I saw him I was not even filling one pad the entire day).

Now I am completely devestated and have not gotten out of bed in the last 3 days. I have only managed to eat twice in 3 days b/c I just have no appetite and I just cry all the time. I can’t help thinking what did I do to make this happen??? What could I have done to avoid this? I just don’t know how to deal with this miscarriage. I have 4 more frosties and we are going to go ahead with another FET, but now Im having dreams that none of the 4 are going to make it to blast and we will have to start all over from the beginning. This will be my 6th cycle and over the past 3 years have spent appx. $50,000 on fertility. This has delayed us buying a house, and I am starting to think that at 29y/o I thought I would have more in life by now. No home to own, no children, just heartache, stress, and feeling empty. I’m sorry for the long post but for the past 3 years this forum has really helped me let things out that I have a hard time dealing with. Any advice or kind words are more than appreciated!


#2

I am so sorry for everything you’re going through. I don’t have any advice I used to find most of the time it didn’t help anyway. But I wanted to tell you what a strong woman you are. How most couldn’t come out of what u have been through so far. I also want to say that one way or another u will get your family each cycle you’ve made progress from no sperm to sperm no implantation to a pregnancy. I know mc is horrible I wish u never knew what that feels like but this will get better I promise keep your head up and look to tomorrow sometimes that’s all anyone can do. Good luck with ur next step


#3

I am so, so sorry. Like the pp, I find that most of the time the advice doesn’t really help. The only thing I can suggest is not to beat yourself up. Not about the loss, and not about laying in bed. When you get ready, you will get out of bed. I can’t tell you that it will ever get easier, I can only say that you will make the best decisions for you. Whether that means continuing to try or putting things on hold. Good luck to you.:grouphug:


#4

Thank you everyone for your kind words… so I have gotten out of bed, but havent yet left the house. This weekend for me is going to be hard seeing I have my best friends daughters 1st birthday and I will have to see all of my friends and their children. I just don’t know how that is going to go… My friend had told me if I didnt feel up to it she completely understands but I figured it’s something I need to do. I can’t hide my whole life from people with children, nor can I hide the rest of my time in my house, PLUS I love that little girl so much and could not miss her 1st b-day. This is the friend though that has been there alot for me (who had also had 3 miscarriages before having her little girl) so if anyone can remotely understand it is her.


#5

Ally, I’m so very sorry for your recent loss. You will eventually have the energy to pick yourself up and continue to get what you have always wanted. The only thing I can add is that you absolutely didn’t “do” anything to make any of this happen. PLUS, there isn’t anything that you could have done to prevent it either. Try not to be too hard on yourself.

The two positives here that I can see are that you are young and have some time to figure this all out AND you found out that you can get pregnant!!! That’s a really big step forward, HUGE. Some of us continue to get implantation failure and this time you got one to STICK. Hang in there, we are all in this together!


#6

Ally, I am so sorry for all the heartbreaking experiences that you’ve had to endure- I honestly feel like a missed miscarriage is the worst joke ever played on a woman. It is so devastating! I’ve been there before, a lot of us have and unfortunately it is going to take some time before you feel better- I know, the one thing not on a infertile woman’s side! After seeing your signature, I do have one question for you- have you ever had a lap or done a depot lupron shot for 3-6 months? Seems to me that if you have stage 4 endo, like I do, it would be a good idea to address it some way, shape or form. But that’s just my opinion. I’m interested in your reply. You are in my thoughts. Hugs!


#7

Oh and no, YOU HAVE DONE NOTHING WRONG! Nothing, zip, zlich, zero. Please don’t think like that. Try and be kind to yourself right now, you have enough bad stuff, be good to the person that needs it most.


#8

Thank you ladies, deep down I guess I know it’s nothing that I did but it’s just hard to accept it I guess so Im looking for something or someone to blame.

Artchickadee: Yes, I have had 3 laproscopies and 3 laparotomies (spelling??, where they cut open my whole belly), at this point I was told by multiple dr.'s that they would not do another surgery b/c of all the one’s I have had unless it was life threatning. I have also done the Lupron Depot shot, but havent done one in awhile due to me doing the IVF back to back to back.


#9

i’m so sorry to hear what you are going through, infertility sux!!! And like the other posters said, you did not do anything wrong. I know exactly how you are feeling…we suffered through 3 miscarriages and 6 total cycles before finally having success. Two of them were pretty early, but one of them we had even seen and heard the heartbeat. This was the second miscarriage and this one crushed me. Not only emotionally but it was extremely painful physically as well. I was soooo devestated that I did not think I would be able to try again. I decided that I had to try something different. I just couldn’t bear the thought of going through that again. At this point we decided to turn to donor embryos. We found 8 embryos through miracles waiting, on our first FET we got pregnant, and for the first time had extremely high beta levels. Imagine my shock when I started bleeding the day after my first beta that was over 1,000!!! Now I was convinced that even with perfect donor embryos there was no way we would ever have a baby. But since we had 6 more embryos left, we went ahead and tried again. I am so glad we found the strength to move forward because that cycle resulted in our wonderful little boy.

I’m sorry for the long post, I don’t have any great words of wisdom, but I thought my story may give you some hope. Please don’t give up, you can go on to have a healthy baby.

About your friends little ones party… if you are still feeling as down as your are now, maybe you should take her up on the offer and miss the party. I know this seems bad but I’m sure she would understand. Maybe you could take the little girl and your friend out the next weekend or whenever you are ready and celebrate her birthday another time. If you did miss the party, find something else to get you out of the house. Please don’t give up!!!


#10

Thank you for this article. That’s all I can say. You most definitely have made this post into something special. You clearly know what you are doing, you’ve covered so many bases.Thanks!

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#11

Just thought I would bump this thread up for you. I am sure there are a lot of people out there that can relate to you!!


#12

Update: So I met with my RE yesterday and he received my bloodwork back from the 2nd set of immunology testing they did right before I miscarried (1st set was done before transfer) and he found that while my NK cells were normal, my NK cell activity was a little high and my TNF cells were very high. He thinks this could just possibley be a dosaging issue with the Neupogen so for my upcoming cycle instead of 28iu nightly I will be doing 48iu nightly plus the Intralipid flush, and low dose prednisone. Can anyone explain to me what high TNF cells mean?? From what I gathered from my RE is that when they are elevated it plays apart in my body rejecting the embryo (like NK cells). He checked on my frozen embryos and we have 4- Day 3 embryos, 8 cells. 3 are grade A and 1 is grade B all with no fragmentation. They will thaw them out and let them grow until day 5 (like my last cycle). I just have this feeling inside that none are gowing to make it to blast (3 out of 4 made it to blast last cycle) but the way my luck has been I just have no faith left that we will ever get good news.


#13

I don’t have any advice, but agree with everyone else that you did NOTHING wrong! While I have never miscarried (as we have never even been pregnant), I certainly can understand the not wanting to eat, get out of bed, etc. Take your time and grieve…then when you feel like it, move forward. I’m so sorry for all you have endured and lost. Infertility is a very cruel and unfair process. Best wishes on your next FET. :grouphug:


#14

It’s such a hard thing. When something doesn’t work how do you keep up hope? Nothing anyone says helps… Saying don’t stress, or you’re young doesn’t help… My advice is to try as hard as you can to have your children “naturally” and then you have to go with plan B or even C. That’s where I’m at… Trying plan A one more time… Then onto the backup plans… One way or another I WILL have a family of my own.