Don't I at least deserve that much? To know why, the cause, the reason my babies die. It's absolutely maddening to have doctor after doctor say, "Well, you do have the MTHFR and the Hashimoto's hypothyroid, but I don't believe that is the cause of your miscarriages." Well, the two we had tested were genetically normal males so that rules out "natures way" and the off chance that the lab grew my tissue instead of the babies'. What do you believe the cause is then? "Sometimes we just don't know." WTF?!
The last time I got this information was a couple of days ago. Did I have a doctor's appt.? No, I got the pleasure of reading it in a report that the perinatologist sent to my OB/GYN. I had gathered some final records to send out to CCRM in preparation for our IVF, and there it was. The cherry on top of that crap sundae? He says maybe I have some generalized autoimmune disorder that they haven't diagnosed yet, but the fucking pernatologist never told DH and me that during our meeting with him! Did he miss the part where I said I would do anything possible to avoid another miscarriage? After all the fucking tests, blood draws, poking, prodding and humiliation I've been through thus far did he really think I'd turn down doing some more if it could possibly give me an answer?!
I hate this because I'm not even technically his patient. He only treats women during pregnance, and I haven't been able to get knocked up again since we lost the last baby in July '06. I just had an appointment with him pre-emptively because I need care for the MTHFR from the very start of a pregnancy and my OB/GYN thought I was too difficult of a case for him to adequately follow. My RE passes you off if you miscarry which royally sucks since my body just doesn't let go and I end up having to see another doc just for a D & C. So I don't relish the thought of having him be my only physician and going through getting passed on during such a horrible time. Who the hell wants to call up a doc and say, " I haven't seen you in a while, but I seem to have failed another one of my babies. Could you squeeze in an appt. to scrape this one's remains out of my useless uterus?"
So, now what? I guess I'll have to try and get the perinatologist to see me again and ask what other tests we can do. Or I can try to find a rheumatologist or someone to help me figure out what to do. I know their are Reproductive Immunologists out there, but I just don't know that I can emotionally or financially afford their testing or controversial IVIG treatments. Not to mention that they are all out of state. I hate feeling so helpless. The pain and fear are sucking the life out of me.
I'm so fucking tired of this. And DH is out of town again, and I just told him off on the phone for the second time today. I feel so alone, and I'm just losing it here. How does anyone make it through this with a good outcome?
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8 comments:
I wish I could jump through the screen and give you a hug. I am so sorry you are going through this, hun. I know it's not the same as having someone with you, but you aren't alone. Please keep getting it all out here. You will get through this. Hugs.
I am so sorry that the doctor stuff is adding to your suffering.
I'm hypo, too, though no one has bothered to figure out why yet. I know how much fun it is (or rather isn't) to be dealing with all sort of complicated medical crap, along with the incredible pain of IF/RPL.
Keep writing! It does help. Well, sometimes it helps...
I wish you all the luck in your IVF cycle. I live in Colorado, so at least I can say it's a nice place to visit! You can either look at IVF as this onerous beast, or look at it as an opportunity to get pregnant. I've looked at it both ways, but it's much easier to find peace with it than fight it all the way. A friend of mine who did IVF with DE was the one who turned my attitude around on this. You've found a good way to get support on the blogsphere. Hang in there!
Thank you all so much for taking the time to comment. Your support means a lot to me! It's a bit of a surreal experience to journal my thoughts in such a public forum, but then to have people get it and care enough to offer their insights and support is amazing.
I try to look at IVF as "at least I'll have a shot again." I mean if we don't at least get pg again we definitely won't have a chance at a baby. It's just that all I know of pg is inextricably tied with miscarriage. I guess in that regard it's just very hard to take it one step at a time. *Deep Breath* It has to be easier to go with the flow than to fight the current, so I'll keep on trying!
I'm sorry you are going through this, I know how hard it is, especially when you have all these identified issues, but just keep getting told, oh, sure, you have that, but that's not it. RIGHT! Then what is? It's so frustrating. I have one piece of advice though - go to the RI, go straight to the RI, and do not pass go or collect $200. If I could've done anything different on this journey, I would have gone to the RI sooner, rather than thinking some normal doctor was going to help me.
Welcome to the blog-o-sphere. You have had such a tough road! I am so sorry for your losses.
I have not had a chance to read all of your posts but I did see that you were diagnosed with a Bicornuate or Acurate uterus. I was diagnosed with a bicornuate a year ago after 2 losses, only to find out I had a uterine septum - an anomaly that causes early loss. A septum can also be easily removed and has good obstetrical outcomes after surgery.
I am wondering how your anomaly was diagnosed - ultrasound, HSG, MRI? These diagnoses can be wrong and have very different pregnancy outcomes. I would strongly encourage you to join the Mulleriam Anomolies Yahoo group and tell the women on the boards your story. They ARE experts, both in knowledge and support.
Wishing you the best of luck.
Here are some links I wanted to share (my blog is the last:)
http://health.groups.yahoo.com/group/MullerianAnomalies/
http://mulleriananomalies.blogspot.com/
http://auterusdivided.blogspot.com/
I'm so sorry for all your pain and anger. I'm sorry you have had to suffer so many losses of your babies and don't have any answers. Not having answers and not having a doc you can trust is an awful, suffocating feeling. I agree, go to a specialist, be it an RI or a rheum. Hang in there. YOu have my prayers.
amberbye from ff here. I hear you loud and clear ... why do they keep dying? I would be irrate if I were you ... not getting that crucial information from the peri let's see ... way back when, when he thought to write it down!!!! ARGH!
I'm so glad you're going to CCRM and will be stalking you ... can you make sure to journal your experience there? They are on my shortlist for IVF #3 - should we need to go there. Hopefully not.
Losses stink.
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