First, let me say that I am shocked at the number of comments and e-mails you all sent me. Your support is immeasurable.
So, yesterday was D&E Day. I had spent the prior day (Wed.) shuffling back and forth from my OB/GYN (who agreed to do the surgery), and the hospital for pre-admissions paperwork and bloodtests. Frankly by the time I woke up yesterday morning and prepared for my hospital day, I was out of tears and exhausted. I just wanted it over.
I even had a few laughs (imagine that) in the hospital with the nurses and in particular the anesthesiology team. One guy was a young Richard Gere who talked about golf and Tiger Wood’s big butt (yeah, I know ???) and the other was a Dr. McDreamy look-alike right from Seattle Grace Hospital (except he was one mystic tan away from resembling George Hamilton). As I was waiting for my “happy hour shot” in the IV from McDreamy, I started at the staff gathered at the desk in the OR, and it dawned on me that most of them were way younger than me and good looking. How did that happen?
Anyway, my trusted Dr. D completed the D&E, and thank goodness she thinks she got it all. I can’t tell you how relieved I was to hear that in recovery. If my hCG hits zero even within a few weeks from now, I will bow down and salute her good work.
So here I am, back where I started a million times. Miscarriage #4 or #5 depending on whether you count my chemical pregnancy from 2006.
I am spent.
But I intend to use the next couple of months to try to uncover anything new I can learn about what my problem is.
For those of you late to the game, let me tell you a brief history. I’ve been tested for the basic RPL panel (thyroid, clotting, immune, blood disorders, etc.) over the last year. Nothing out of the ordinary. S. and I have had our karotype tested- normal chromosones. I’ve had Day Three testing drawn three times in the last year, my FSH and estradiol still clocking in as better than normal for my age. I’ve never been diagnosed with a luteal phase defect (on unmedicated cycles I have a 13-14 day LP). I’ve only had low progesterone with a pregnancy once that I know of, but that one was doomed from the start with low hCG. Hubby’s SA’s have been normal.
So there are a couple of unanswered questions. One, it’s proven I still have a decent ovarian reserve but nothing to be said of the “quality” or the eggs, which may indeed be a big problem. The RE vaguely suggested a couple paths, one being donor eggs. I feel as if I am under the gun, not just with my age, but financially. So it is important to have a plan that makes sense.
Two, I know all of you who have been there (suffered any repeated losses) have read probably the same books I have. I am especially intrigued by some immunologial factors that may have NOT been tested for. Not because I have a crappy RE, but they can’t order more detailed tests because my local labs are not equipped to test for them.
If any of my IF blogging friends are still lurking, I need help. If you or any of your blogging friends have had RPL testing beyond the normal stuff, I want to hear from you. What did you do, where did you go (doctors, cities), what did another specialist find if they found anything? My e-mail is in my profile….
To be honest, I don’t know where this path is leading. I don’t know if I am at the end or close to it, but I promised myself last night as I was lying in bed that I would take the next few months and uncover every stone I can. Because I won’t even make peace with any of this if I don’t try.
If you are hearing desperation in my post, well, truth be told, that ship sailed ever since the last miscarriage. I am so totally devastated knowing now that it is possible to have a great looking pregancy bite the dust and that that scares the shit out of me.
But it also make me want to look for the answers. I know that is easier said than done, and sometimes the answers are never found. But after all the time, energy, disappointment I’ve had over the last three years… I need to do right by myself.
I need to uncover each stone. I need to.
Hi Shelli,It’s hard for me to comment without knowing what was on the standard RPL panel that you mention. I have had multiple early losses and been through four doctors and loads of tests and only just now found the problem. Natural killer cells in the uterus – basically a messed up immune response that doesn’t recognise the embryo as part of the mother, it thinks it is foreign, and so kills it. And here I was happily blaming my MTHFR and ATA. This test is not standard. Most RE’s won’t have heard of it or even believe in it. You need to see a reproductive immunologist. There is some really great info at the Yahoo reproductive immunology group.If you search that term you should find it. Lots of girls there swap info about docs and cities etc. There is SO much more than what your average RE knows about. I am so glad I finally found the right doctor. As far as I am aware my doctor is the only one in AU who deals with this issue. I hope this helps and good luck!
http://fertilizeme.blogspot.com/2008/02/and-beat-goes-on.htmlHere is a link to my blog where i discuss part of my RPL results and what they meant to my MFM/perinotologist (maternal fetal Medical) dr. Maybe you can get an appointment with one and ask your questions. My MFM Dr explain so much more to me than any other dr could explain to me in a way that I had some clarity (gave me many different articles/notes/pamplets to read). Also a genetic counselor has the knowledge to explain is as well. Good luck to you and so sorry to hear about your losses.
As a sufferer of secondary infertility myself, I highly recomend my doctor in NYC, Sami David. You should check out his website http://www.samidavid.com. The amount of detective work that he is capable of doing is really amazing. He’s worked miracles for a lot of couples who had given up hope. It’s worth a shot at least to read some of the testimonials. People come to him from all over the country. On another note, I find your strength, humor and ability to go on really inspiring. In many a dark moment in my fertility roller coaster (miscarriage, botched D&C, second D&C, first green light cycle got an ectopic, resistance to methotrexate and on and on and on) yoru blog gave me a lift. I hope you get a lift soon too.
Gah, “unexplained” is awful. Our doctors had no idea why I could never stay pregnant. Like you, we had all the tests done. At our insistence (our highly respected docs thought it was stupid) we tried donor sperm. I got pregnant the first time and carried to term. Second time was the same way. http://plainjanemom.com/2007/08/31/what-it-took-to-get-us-to-where-we-are-now-it-exhausts-me-just-reading-about-it/I guess what I’m saying is: go with your gut. It’s what worked for us. That and trying not to go completely batshit crazy.Sending love your way,Erika
Shelli,I hope you’re doing OK. Glad to hear everything went OK with the D&E… as glad as one can be given the circumstances.I will TRY to keep this as short as I can! But your story is all to familiar.My RPL w/u has been negative. But if I get pg. ever again my doctor wants me on extra folic acid, baby aspirin, Lovenox, and Predinsone. His rationale is although all my clotting tests are “normal” I could have some unknown weird undiscovered clotting disorder that there is no test for. Same goes with the prednisone for the immunologicals side of things.There’s also 2 doctors in Chicago (I live in Michigan) that he could refer me to… on does IVIg the other does paternal leukocyte infusion. Neither treatment has a conclusive study to show whether they are effective or not. And of course that kind of treatment would not be covered by insurance.I could go on… but that’s a good summary of all of my “research!” Let me know if you come up with anything else. Take it easy this weekend,Jen
Shelli,I don’t sense desperation. Frustration, yes, and determination. I think that is a healthier mindset than just hopelessness. You want some answers and you deserve them. I really hope you find them.–MM
I hope someone can give you some answers or help with what you are looking for. I am so sorry you are having to go through this. Stay strong, I am saying some prayers for you!
I am so sorry Shelli. I wish there was something I could say or do to help. Unfortunately I don’t have any wisdom on the RPL thing but I hope that there is someone that adds something to what you’ve already been tested for that will provide you answers. {{{{HUGS}}}}}
I had some basic RPL testing done but all they tested me for was lupus anticoagulant and antiphospholipid syndrome. I believe those are included under the “blood disorders” category since they involve clotting. But, I wanted to throw that out there just in case. I never had it done, but if they can test your homocysteine (sp?) levels, it might help to determine if you have the MTHFR mutation and if it would be an issue. If it is, they might put you on baby aspirin or Lovenox/Heparin. Again, I’m no doctor but just wanted to throw some stuff out there from my limited bucket of knowledge.I’m sending lots of love your way from MD. It is just so hard to deal with the grief and feeling like you have such a limited timetable is so stressful. I hope you can find a smoking gun. XOXO