Wednesday, December 15, 2010

Unanswerable

"Mo, no one knows what to do in your case anymore, because no one knows what the problem is.
There are no more tests that I can think of to run to answer your questions.
And no one who will be able to tell you what to do, what direction to take. I'm so sorry."

--my local RE, in response to my question of where to go from here
(medical options include another FET, FET with gestational carrier, sperm donor, or egg donor)

Mo

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67 comments:

  1. Oh no, what a disappointing thing to hear. I'm so sorry and wish there was something to say to make it better for you. You are in my thoughts and prayers

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  2. I'm really sorry Mo...this is just a cluster*uck beyond cluster*ucks. You and Will were the topic of conversation at the dinner table last night between me and DH. We both just really feel for you. Unexplained has got to be beyond frustrating and so incredibly unfair. What does your gut check say is the culprit? Big big big hugs...I'm here every step of the way.

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  3. Grrr. I hate this not knowing. I assume you'll talk to Dr. Schl. as well to get his take on the situation? What about that simultaneous FET and GC plan you talked about a while ago?

    You're in my thoughts.

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  4. I can't imagine what you are feeling- but here from across the computer screen I sit here in frustration for what you're going through- and sadness- its not fair. . . its not fair. I'm thinking of you Mo

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  5. Oh god - so very sorry. There's nothing worse than hearing that the doctor has no clue. Thinking of you.

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  6. Well, damn. That was one seriously pessimistic response. I hope Denver has another idea. Ugh, I am so mad for you!

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  7. Damn it! I'm sorry. Sucky, sucky, sucky! Sounds like, without solid recs from the REs, you and Will need to decide what you can handle emotionally. Sorry this crap is beating you down. So damn unfair!

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  8. My initial reaction was that, although frank, it was a bit of an a-holish response. I'm not sure what question you posed to him to garner that response nor do I think you are looking for someone to "tell" you what to do. In IF it is all about options, paths to travel to get to the goal, and then up to the patient to decide which road to go down.
    You are not out of options. You have to think in terms of doing what you'll regret not doing but also think in terms of what is more likely to get you to motherhood.
    I'm sorry about the f*ckedupness of this all.

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  9. Oh Mo, I'm so sorry. What a terrible thing to here. I wish I knew what to say. Please know you're in my thoughts and in my heart. I hope your other clinic has some more productive things to say.

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  10. What a terrible thing to hear. I hope CCRM can give you a more optimistic take on things. You must be really struggling right now. I'm sorry.

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  11. wow, that is so tough to hear. i wonder what CO will say...but how are you feeling about it? what do you want to do? what does your heart say? and will? how is he?

    thinking of you both.

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  12. Oh Mo, I'm so, so sorry. I just have no words.....thinking of you and Will.

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  13. I'm so sorry. How frustrating that your local RE doesn't have any answers. I wish they could figure out the root of the problem here!

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  14. I'm so sorry it's such a horrible thing to hear :(

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  15. Oh hun, I'm just SO sorry. Sending you hugs and prayers.

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  16. Oh that is tough to hear. I'm sorry. I'm thinking of you and Will.

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  17. I'm so sorry that conversation was so unhelpful. It must be beyond frustrating. I do hope you can get a little more guidance from Colorado. Big hugs.

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  18. Mo dont lose all hope I was told a million things from differnt RE's when we kept having recurrent losses...and the fact that you had normal male def says no genetic issues as sometimes normal female can mean they got some of your tissue and not the baby...So I know I sound like a broken record to some but at your point in the game I believe there still is help for you....your just not seeing the right Dr.....I really really really think you set up an Apt with Dr.Kwak Kim in Chicago...I know it is probably far for you but people travel to see here from everywhere in the US and even some across seas...She is very known in the immune community and also worked very closely for years with Dr. Alan Beer who wrote is your body baby friendly he is the pioneer in immune related pregnancy loss...Dr.Kwak does require the first visit to be done at her office but after that she can manage things from afar and as long as you have a Dr. that will complete her recommendations it would work out..I would def not be where I am today without her and I know immune stuff is still controversial but she test the numbers and other things and Ive seen what my body does and how it responds to her treatments and I am now 29wks pregnant and by no means has it been an easy ride and there has been lots of ups and downs and constant change but I can say I am still pregnant thanks to her...If you have any questions you could email me personally at kklendworth@yahoo.com...I just dont want you to lose all hope because I did until I met Dr.Kwak and I know she could help you:)

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  19. Mo, I'm so sorry. Having the experts say they have no idea is the hardest thing. I echo what Dora says, your next step will be determined by what you can handle emotionally.

    'Coming to Term' has stories of women who went through a a comparable hell. They still kept going, and some of them succeeded one day. The one thing that book absolutely drove home is that in many of these situations, science had absolutely NO answer for why things suddenly worked with one pregnancy, while failing so reliably every other time.

    The question is- how much more can you go through? I'm more numb to pain than I was with the first loss, we do grow scar tissue, but I fear it can never be thick enough to shield us sufficiently.

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  20. I'm so sorry, Mo. It's so hard to find yourself in a situation where science has no answers -- perhaps even more so if you are in the field yourself?
    I'm thinking of you, and hoping that you will get answers one day, or better yet, have a healthy baby independent of whether anyone is able to explain it.

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  21. I guess the very small silver lining here is that at least you know your RE isn't feeding you a line of bulls***. Ugh. Am thinking of you and sending lots of prayers your way as you and Will work to figure out what's next.

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  22. Well that's the most useless response ever isn't it. I'm so sorry. I hope Denver can give you more direction.

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  23. Oh-Mo...Wish that would have been said differently.
    I know for myself that after 6 failed IVF's and 2 failed IUI's and 4 miscarriages in the midst of all that....well, I could not walk into another IVF without changing some factor in a big way. I knew I was not quite ready to give up on pregnancy otherwise we would have pursued adoption. I knew that I wanted to be a mom and I really wanted to experience pregnancy and breastfeeding and well to make a very long story short...We changed up a big factor and used donor eggs. I have a beautiful 12 week daughter. I had to emotionally get to a place where I was ready to open that door. After my miscarriage 2 years ago...we pursued donor. I still have embryos with my eggs and DH sperm frozen in Colorado and I am not sure whether I will ever visit those again. I could not imagine another miscarriage. And though we were never sure what the factor was that was causing failed IVF's and miscarriages...it was a risk. Could it be my eggs? Was it my uterus? DH sperm? The only thing I knew without a duobt was that I was going to walk into another IVF with a different major factor. First round of DE IVF and now we have our baby girl.
    I want a happy ending for you.
    And I worry about you.

    Shannon

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  24. Sorry that there aren't words, even for the doctors. It's so hard, and nothing any of us can say will make it easier. I hope that you are able to find your path-- whatever it may be. We're all cheering for you.

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  25. Oh, I'm just so so sorry. That must have been so hard to hear. Sending you lots of internet love.

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  26. I'm crushed for you Hun. I wish there was a clear answer, I know that the only reason we could work with a gc is that my re was clear and ruled out my ute. It's big decisions. If you ever want to email to chat about surrogacy, email me speculumstories@ gmail.

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  27. Ugh - maybe its time for a new Dr? I think getting a 2nd opinion might be helpful - you might get a different perspective or different way of hearing about things that ever before. That's how my 2nd opinions have gone and it's been very helpful. I'm sorry, sweetie. Sending love and prayers.

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  28. Oh I know how this feels, an explanation would make it easier some way, at least give you answers, a reason why.

    Sending you hugs and hoping you manage to find a direction to take that brings motherhood to you.

    ~x~

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  29. I think if it weren't for bad luck you'd have no luck at all is what they are saying. It is so hard to hear that they can't help you. I am so sorry.

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  30. i REALLY know how you feel, being in the exact position. It sucks beyond belief. After one year of continued disappointment (well, on top of the previous 6 of trying with my own eggs!) we are STILL searching for a productive egg donor, and are in the process of applying for surrogacy, but success doesn't feel any closer.

    Wishing great things for both of us in the new year. x

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  31. I've been reading your blog for a short time now. Like the other posters, I am so sorry you and Will are going through this. Unexplained it the worst.

    I noticed that you don't list adoption in your choice of options? Is there a reason for that? Forgive me if you have already covered the topic.

    Best wishes to you and Will!

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  32. I think this illustrates how very little doctors know about recurrent loss. I know this doesn't make your next steps easier to figure out. Just know that you will pick the right thing for you.

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  33. Damn. That is one horrifically unsatisfying answer. I have no wisdom here, but I have a listening ear if you need one.

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  34. Damn is right. I'd probably try the FET + GC route first, then think of DE. But you've got to do what's right for you and Will. I so wish you weren't having to deal with this.

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  35. What a suckerpunch. My thoughts are with you. I hope you get some good insights soon.

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  36. I am so sorry! I am sure you have been tested for anticardolipin antibodies, but I just have to mention it. For my 3rd miscarriage they found that I was positive for it. I had seen the heartbeat at 6 and 8 weeks and then at that next visit there was nothing. I was basically told that a blood clot probably stopped the blood flow to the baby. I had to be on aspirin before TTC with my son and also through the whole pregnancy. Like I said, I am sure it has already been checked out, but I thought it was worth mentioning. As far as where you go from here...only you and Will can decide. You know what you can handle. I am sure having your RE tell you they don't know what to do was very difficult, but it doesn't mean there is no hope! Hang in there!

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  37. I just want to scream at him "NOT HELPFUL!".

    Maybe just trust your instincts on what to do next...they are usually right!

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  38. I just hate that! Thinking of you guys. I wish there were answers!

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  39. No useful advice, or ideas what to do, just- Oy! I feel for the both of you...

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  40. What MrsSpock said. I'm so sorry, Mo. You have endured so much more than I think I could, and I just hope you are able to find the right path.

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  41. I wish you did not have to hear that today. Wish the answers could be different for you. I'm so very sorry, Mo. Hope you are doing okay.

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  42. So sorry to hear this, and hurting with you and Will. From reading your posts, this much is clear: you want a child. Presuming you don't feel adoption is the right path for you right now and don't feel able to take on the risk of another similar loss, it seems to me that one question might point the way - what is more important to you guys, having a child that is genetically related to you both, or going through the experience of pregnancy yourselves? While certainly not any easy question (nor a guaranteed baby), answering this may help you figure out your next steps. Good luck to you both, and wishing you some peace this holiday season. Still hoping for you and with you.

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  43. I'm sorry. I know how difficult this is. On the one hand, I think the baby's normal chromosomal result is a good sign, in that it confirms you can make normals. But I realize not having a clear answer about why this pregnancy didn't continue is heartbreaking and frustrating.

    I read through the details of your history. Am I correct in thinking you haven't done any immune treatment? (Other than the Depot Lupron, which I know is for the endometrium but I'm not sure is immune.) If not, would you consider looking into immune treatment? That may be an avenue to explore.

    I'm working with an RI on the West Coast, but I also recently came across the name of an RE/RI in NY who I spoke with briefly, and he seems very passionate about trying to help patients with RPL. Let me know if you're interested in his contact info - I'm not just posting it outright because I don't want to push something you're not interested in and because I don't want to be an advertisement, particularly since I'm not a patient of his at this point so I'm not speaking from much first-hand experience. However, I am happy to share what I've come across in my research if you want it...

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  44. Oh hon :( No words, just love xx

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  45. You are in my thoughts and prayers. I've been thru 2 miscarriages before having my daughter (who is 1 now) and I cannot even imagine what you are going thru. How about getting a second opinion - perhaps try another Dr? It's horrible not knowing what the problem - becuz if you know what the problem is, you can find a solution. There are some great reproductive endocronologists in the NJ/NY area - including the one I went to - www.sbivf.com, I heard the program at Cornell in NY is also very good - I don't know if that is an option for you....praying that you find some answers.

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  46. Oh Mo! I feel your fury!!! I'm so sorry that things are this way. I just wanted to let you know that I am with you. Yesterday I was told that the lab techs lost my baby, then when they found it, it wouldn't grow DNA because of the time expiration. So I am left 'unanswerable' too! Plus super ticked! Not something anyone wants to hear after so much loss. It is frustrating and heartbreaking. I'm so sorry that you are in this situation. Look at all of your options and decide, in time, what your heart is telling you. Only YOUR heart will decide when enough is enough. Truly unfair!

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  47. It frustrates me when I read people get upset when a doctor admits they don't know what to do next. By no means am I suggesting the news you received was less than horrifying to hear....but sometimes its what we need to hear. That doctor did all he/she was capable of doing based on their education, experience or just what science is available at this point of time.

    Years ago I was told by my MD I was not going to be able to conceive and my only option would be adoption. I realized I could handle it one of two ways.....be crushed by it and accept what she told me or thank her for her time and move on, with a huge medical file in tow.

    Every doctor or medical provider has a different set of experiences from which they've learned. Maybe there's another doctor out there that will hear your story and know just what to do.

    Not to sound curt or non-empathetic but the reality of it all is some of us just won't get pregnant. It scares the sh*t out of me to think it won't happen but the reality is its very possible. I know personally I'm going to give it a go to have a child naturally but the truth of the matter is, God may have different plans for me. There are PLENTY of kids out there looking for a loving home. You don't need to have the same DNA to be a mommy and daddy.

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  48. I hope you told him what he could do!
    Mo and Will I am so sorry, I've been reading your blog forever and rooting for you.
    Would you consider using a surrogate? We used one with my eggs and while it did not work due to my bad eggs, the experience was a positive one. The carrier was wonderful but in the end we went with adoption versus donor egg.
    Just remember this, you will be a mother. It might be next year or 3 years, but you will be one.
    m

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  49. sending you love and good thoughts, I'm sorry that it isn't more....

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  50. I say this with protective love, so don't get mad, but what the fuck kind of options are those? That is a list of every option under the sun, not advice that we pay dearly to get.

    I am sorry my Mo. I hold on to hope for ccrm.

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  51. Mo, just wanted to let you know I nominated you for a 'Cherry on Top' award.

    I did'nt say this in my last comment and I wanted to. I hope your next option works out to be FET with surrogate. Given all I know about your history of RPL I DON'T think there is any solid evidence indicting your uterus, but Mo, physically and mentally, you have been through so much. I've been through 2 first trimester losses in 6 months, the one thing I dread is the process of the loss, the buildup of pregnancy, the D&C, the hormones...after a while, if you can spare yourself this, then do.
    Of course, you know your limits and capability better than anyone else.

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  52. those are a lot of options. I agree about the surrogate option, only b/c of what others have said... You have been through so much!

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  53. My RE said almost the exact same thing to me after miscarriage #6. She also said, after doing an US to check uterine lining and egg size, that I'm more normal than I think. Ha! Then why can't I sustain a pregnancy Sherlock? It's frustrating to put it mildly and fucking annoying to put it harshly. I wish I could offer some wisdom about what to do next but I don't know myself. All I can say is I understand what you're going through enough to wish like hell this wasn't happening to you. Sending my thoughts and much love to you.

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  54. Ouch:(
    Can't imagine how frustrating this must be to you both...

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  55. :-(


    Sad...and what a glum time for the Holidays.

    I hope you will sit down together and take a good look at the options.

    You deserve a break. You do.

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  56. Hi Mo. I've read for a while now, never commented. I just wanted to say that that sucks, and I know how you feel. I had my tenth miscarriage a couple of weeks ago, and I'm in the same boat - no one knows WHY I can't stay pregnant. This last one we had 'fixed' all my previous problems - and then my blood pressure went haywire and they couldn't get it down at all...and I lost another one. No one can tell me WHY, and its maddening.

    I have the MTHFR genetic mutation, which isn't always even tested for, and I really had to throw a fit to get blood thinner for it. Its not an immediate thing - test positive for MTHFR, get blood thinner - even though I've had clotting problems before and I have a family history of clotting problems, all unrelated to pregnancy.

    And I had to fight and fight to get anyone to admit that yes, I do have a luteal phase defect, and yes, we probably should do something about that.

    It's been like pulling teeth to get anywhere with my medical professionals, and now I'm out of reasons WHY.

    I just wanted you to know that I understand. It sucks. I really hope you figure it out. (Sorry for the verbal vomit.)

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  57. UUUUUUUUUUGGGGGGGGGGGGGGGGHHHHHHHHHHHHH! Wow. Not sure I know what to say. Take care of yourself. Do something that you love.

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  58. I know that the thing that those of us with IF/recurrent loss want to hear more than anything else is "we know what's causing the problem and we know how to fix it", but in the end I got sick of hearing that. I've lost count of the times a new doctor reckoned they had the solution, I tried it and it failed. In the end we went for donor eggs, based on our own best guess - and it worked - after 7 years, 6 losses and more tests, "solutions" and treatments than I care to remember. Please don't lose hope!

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  59. So- I have been very impressed with the amount of medical knowledge you have developed during this unfortunate process. I think you and Will will figure this out. You are very intelligent people and will know what to do. I ave so much confidence in this fact.

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  60. I'm so sorry for your pain. I don't know if this is at all helpful, but I just recently read a blog where she was going through a similar situation of recurrent losses. Eventually she found out that she had celiac disease and that was negatively affecting all of her pregnancies. Once she got that sorted out, she was sucessful.

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  61. I hate this for you, I really do. It's just not fair.

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  62. Oh Mo, I am just so sorry...words can not begin to express my sadness for you and Will :( and what a rotten response when you are already down!! Ack! Thinking of you...

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  63. Mo-- just checking in to see how it's going. I hope that you were able to enjoy your holidays, that the family drama is over and that you can begin to turn your thoughts towards what your next steps will be. I am sure that you and Will can figure out what feels right for you right now. Sending cyber hugs and hope that CCRM has more satisfying answers on this front.

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  64. Shit. Can't imagine how you must be feeling. I wish you lots of strength and love during this time. When you are ready would you consider going an alternative route? So sorry for this news.

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  65. Just wanted to give you a ((HUG))

    Thinking of you,
    Polly

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  66. I hope you both are doing well and survived the christmas season. I send my best to you. Thinking of you.

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