I'm sorry I've had trouble updating the community here and the "Who Shot my Stork?" But the last month has been crazy. I went through my IVF, had two perfect 8 cells. Started to feel symptoms in the 2ww. Tested early and my hpt was negative. Tested again and had 3 positive hpts. Beta #1 was only a 14, and I knew that was bad news. I was devastated. I tried to make my peace with it.
Beta #2 was 4 days later and it was a 36. So, we thought it's over for real now, we tried to make our peace with it finally.
Beta #3 was 4 days later and the number quadrupled to a 160. We all admitted confusion and wait to see what was going on.
The day after Beta 3 I started spotting, and 3 days later I bled a lot, with clots. I had some wine that night, took some Advil, told friends who knew it was over. We cried and made our peace with it AGAIN as best we could.
Beta #4 was 4 days later and my beta is now a 552. My uterus is still clear, but it would be you usually can't see a sac until it's closer to 1000. They told me they were concerned about progesterone (why? Isn't this over???) and to double my dose. They aren't sure whether it is:
- an ectopic (still not visible)
- a miscarriage (betas still haven't come down somehow)
- small chance of viability- how with passing of clots I don't know. It would have to be a miracle in my opinion. Lots of people are posing the "lost twin", i just don't know and of course don't want to hope for something soooo far off.
But after going through so much, I can't think it's anything but over and hoping it's NOT an ectopic.
I have heard some of you ladies have had an ectopic in the past?? At what point, does it start becoming dangerous? I mean, it can't rupture a tube if my beta is still only in the hundreds, and if they can't see it yet, correct? My doc scheduled my next scan and bloods for Thursday. They do not feel it's dangerous yet, but told me to be on the lookout of course.
This just plain old, flat out, SUCKS. It is the most draining and maddening part of my fertility experience so far (and that's saying something, after 2 other m/c's and 2 other IVF's.) I just want to be able to move on, and even that can't happen.
Any advice is appreciated...Thanks for listening to my tale of woe. I am not the miracle child of IVF, sadly.
Tuesday, June 15, 2010
Monday, June 14, 2010
Introductions
Hello,
I found your blog yesterday and spent all day poring over it. I found it at just the right time, because I really need to be part of this conversation! I have been feeling very isolated for a while now with my IF experience.
So, here's a little bit about me: I am 34 years old, and my husband and I have been trying to conceive for over 18 months. We tried naturally for about 9 months, but in that time I had some very negative experiences with doctors that made me paranoid in general about being dismissed and under-diagnosed, and probably led me to worry and seek intervention sooner than I might have otherwise. I had a high thyroid test (Hashimoto's hypothyroidism) but had a number of doctors tell me that things were fine, that I didn't need medication, etc. Since I had already been ttc for 7 or so months at that point, I was already feeling uneasy, and that's when my self-diagnosis on the Internet began. Reading about links between thyroid and conception/infant health just made me very mistrustful of my doctors, with whom I also had some truly horrific experiences I won't go into in detail right now (I was screamed at by an RE to "Stop thinking I could control everything... I could end up with a kid with Autism; we're not robots! We can't control nature!") All of this is just to say that I started my IF journey feeling at times that I was "hysterically" inventing the problem, and having a hard time getting any acknowledgment or support that something might actually be wrong.
I eventually found a good Endocrinologist to treat my hypothyroidism, and then a fertility clinic here in NYC where one doctor accepts my insurance (RMA: http://www.rmany.com/) Since September 2009, I've been going to RMA regularly. My RE there diagnosed me immediately with PCOS, although I do not have all the "classic" symptoms of pcos (it was something that had been overlooked by other docs). I do have polycystic ovaries on an ultrasound, but I also do get regular periods (albeit long cycles - 32-34 days) on my own, and I'm fairly sure that I ovulate at least most of them time during those cycles. Although my doctor likes to refer to my "erratic, irregular cycles," the truth is that my cycles were not all that irregular before I started intervention; they were just on the long side. My experience with RMA has been that they are competent and efficient; the nurses return calls and results swiftly, and they are always open. But my doctor - who is well regarded and well published in the field - very clearly sees me as a statistic and an age category. His treatment of me is technically proficient, and may in fact be the best option, but I don't get a sense that he really thinks about me as an individual case. At all. He definitely needs to re-read my chart every time he talks to me, and then makes a decision based on the information in front of him. He is not very interested in my thinking, and after my failed IVF, did not arrange to discuss with me, but just said, "Ok, when do you want to do your FET?" My biggest complaint at this point is that he doesn't provide me with ANY information, just "solutions" (which so far haven't worked). He seemingly has zero curiosity about why my IVF failed when everything looked perfect throughout the cycle.
So, here's my treatment history, all at RMA: I had 4 cycles of Clomid (various doses) with IUI's -- all BFN. I had one cycle of Gonal-F injections with IUI, in which I had 4-5 eggs -- BFN. I just had my first IVF in April/May. As they could have predicted (and perhaps better planned for) I "overstimulated" and had 47 eggs on extraction! I was completely thrilled when 20 of them fertilized. We transferred two beautiful day-5 blastocysts (Grade A) -- BFN. I was really devastated, as I had thought of IVF as my "last resort." I also kind of thought, pragmatically, at least it will show us something. If my eggs don't fertilize, at least we'll know they're terrible. But that didn't happen, and everything looked so good! (btw, my husband's SA is fine -- borderline low morphology, but his sperm count is consistently extremely high). On both my Gonal-F IUI cycle and my IVF cycle, I am pretty sure that I felt some "pinches" or "twinges" that I am now suspecting were implantation pangs. On my IVF beta, I had trace amounts of hcg in my system, enough that they re-tested me two days later just to confirm. The nurse said this maybe suggests that something started to implant, but then stopped dividing. Now I am wondering if this is the issue -- that my eggs do get fertilized, but just can't keep dividing. My lining always looks great on the ultrasound, and though I've had borderline low Progesterone tests in the past, I'm always on the supplements or POI shots, and the numbers are high. My progesterone test with the IVF was around 27. So I don't think the problem would be inability to implant, but maybe there's a genetic factor or something else that might cause the embryos to arrest or stop dividing? This is something I need to ask my doctor about, I guess.
We are now moving into a second IVF cycle. Although we have five frozen blastocysts, we are doing another fresh cycle this summer, partly because I am a teacher and can not go through that during a school year again, and partly because we want to exhaust my insurance benefit on the more expensive treatment before we do the FET. Once that insurance benefit is gone (after this fresh cycle) we will be paying for everything out of pocket, and I don't think we are able or willing to do much of that. We don't really want to spend all of our "adoption money" on treatments that may or may not result in a child, so I think one FET would be our last intervention before moving on to adoption. So, as I move into a second fresh IVF, I am hoping you all can help me figure out which very specific questions to ask my doctor (I am going to call and schedule an appointment just to review my treatment this week). I am hoping to impress upon him that this is likely our last shot, and that I really want to explore possible reasons for why the first IVF failed. If my embryos are not dividing, why is that? Is there anything we can do to get a better outcome? Are there specific tests I should be asking for? This is really the time to do it!
I am currently on Provera to bring on my period, as this cycle after the failed IVF is stretching on quite long (I'm on day 32, but bloodwork last week on day 27 showed that I wasn't even close to ovulating). I'm hating this provera, but hoping it brings on my period sooner rather than later. Once that comes, I'll go into bcp and lupron, and hopefully start stimming again end of July. Part of me wanted to try and switch clinics because of the impersonal, "one size fits all" treatment at RMA, but Cornell doesn't have any appointments until end of summer, and I really just want to move forward with this. I suppose if things fail again, we may try to move on to Cornell, but at that point we'll be out of money, so I'm not sure.
Well, this is getting long, so I'll end it here. I will just add, though, that despite my truly wonderful, sensitive, supportive husband, K., I feel very alone with all this. My best friend got pregnant in October after 2 months of trying, she's due in 2 weeks, and this has basically ruined our friendship, at least for now. My cousin is also due at the end of the month, and over the last year and a half I've watched everyone around me get pregnant, have babies, and move forward with their lives while mine stands still. I feel like time moves on and changes happen for other people, but I am just stuck in cycle after cycle of stagnation and disappointment and heartbreak. I feel like I've fallen off the wheel, and the consequence has really been that I hide away, hang out with my husband, and avoid social situations as much as possible. I just feel like I can't relate to anyone, and they definitely can not relate to me.
Thanks for reading this, and I really do look forward to "talking" with you all! Please do comment if you have some suggestions about what I should ask my doctor now...
Thanks so much,
Jen
I found your blog yesterday and spent all day poring over it. I found it at just the right time, because I really need to be part of this conversation! I have been feeling very isolated for a while now with my IF experience.
So, here's a little bit about me: I am 34 years old, and my husband and I have been trying to conceive for over 18 months. We tried naturally for about 9 months, but in that time I had some very negative experiences with doctors that made me paranoid in general about being dismissed and under-diagnosed, and probably led me to worry and seek intervention sooner than I might have otherwise. I had a high thyroid test (Hashimoto's hypothyroidism) but had a number of doctors tell me that things were fine, that I didn't need medication, etc. Since I had already been ttc for 7 or so months at that point, I was already feeling uneasy, and that's when my self-diagnosis on the Internet began. Reading about links between thyroid and conception/infant health just made me very mistrustful of my doctors, with whom I also had some truly horrific experiences I won't go into in detail right now (I was screamed at by an RE to "Stop thinking I could control everything... I could end up with a kid with Autism; we're not robots! We can't control nature!") All of this is just to say that I started my IF journey feeling at times that I was "hysterically" inventing the problem, and having a hard time getting any acknowledgment or support that something might actually be wrong.
I eventually found a good Endocrinologist to treat my hypothyroidism, and then a fertility clinic here in NYC where one doctor accepts my insurance (RMA: http://www.rmany.com/) Since September 2009, I've been going to RMA regularly. My RE there diagnosed me immediately with PCOS, although I do not have all the "classic" symptoms of pcos (it was something that had been overlooked by other docs). I do have polycystic ovaries on an ultrasound, but I also do get regular periods (albeit long cycles - 32-34 days) on my own, and I'm fairly sure that I ovulate at least most of them time during those cycles. Although my doctor likes to refer to my "erratic, irregular cycles," the truth is that my cycles were not all that irregular before I started intervention; they were just on the long side. My experience with RMA has been that they are competent and efficient; the nurses return calls and results swiftly, and they are always open. But my doctor - who is well regarded and well published in the field - very clearly sees me as a statistic and an age category. His treatment of me is technically proficient, and may in fact be the best option, but I don't get a sense that he really thinks about me as an individual case. At all. He definitely needs to re-read my chart every time he talks to me, and then makes a decision based on the information in front of him. He is not very interested in my thinking, and after my failed IVF, did not arrange to discuss with me, but just said, "Ok, when do you want to do your FET?" My biggest complaint at this point is that he doesn't provide me with ANY information, just "solutions" (which so far haven't worked). He seemingly has zero curiosity about why my IVF failed when everything looked perfect throughout the cycle.
So, here's my treatment history, all at RMA: I had 4 cycles of Clomid (various doses) with IUI's -- all BFN. I had one cycle of Gonal-F injections with IUI, in which I had 4-5 eggs -- BFN. I just had my first IVF in April/May. As they could have predicted (and perhaps better planned for) I "overstimulated" and had 47 eggs on extraction! I was completely thrilled when 20 of them fertilized. We transferred two beautiful day-5 blastocysts (Grade A) -- BFN. I was really devastated, as I had thought of IVF as my "last resort." I also kind of thought, pragmatically, at least it will show us something. If my eggs don't fertilize, at least we'll know they're terrible. But that didn't happen, and everything looked so good! (btw, my husband's SA is fine -- borderline low morphology, but his sperm count is consistently extremely high). On both my Gonal-F IUI cycle and my IVF cycle, I am pretty sure that I felt some "pinches" or "twinges" that I am now suspecting were implantation pangs. On my IVF beta, I had trace amounts of hcg in my system, enough that they re-tested me two days later just to confirm. The nurse said this maybe suggests that something started to implant, but then stopped dividing. Now I am wondering if this is the issue -- that my eggs do get fertilized, but just can't keep dividing. My lining always looks great on the ultrasound, and though I've had borderline low Progesterone tests in the past, I'm always on the supplements or POI shots, and the numbers are high. My progesterone test with the IVF was around 27. So I don't think the problem would be inability to implant, but maybe there's a genetic factor or something else that might cause the embryos to arrest or stop dividing? This is something I need to ask my doctor about, I guess.
We are now moving into a second IVF cycle. Although we have five frozen blastocysts, we are doing another fresh cycle this summer, partly because I am a teacher and can not go through that during a school year again, and partly because we want to exhaust my insurance benefit on the more expensive treatment before we do the FET. Once that insurance benefit is gone (after this fresh cycle) we will be paying for everything out of pocket, and I don't think we are able or willing to do much of that. We don't really want to spend all of our "adoption money" on treatments that may or may not result in a child, so I think one FET would be our last intervention before moving on to adoption. So, as I move into a second fresh IVF, I am hoping you all can help me figure out which very specific questions to ask my doctor (I am going to call and schedule an appointment just to review my treatment this week). I am hoping to impress upon him that this is likely our last shot, and that I really want to explore possible reasons for why the first IVF failed. If my embryos are not dividing, why is that? Is there anything we can do to get a better outcome? Are there specific tests I should be asking for? This is really the time to do it!
I am currently on Provera to bring on my period, as this cycle after the failed IVF is stretching on quite long (I'm on day 32, but bloodwork last week on day 27 showed that I wasn't even close to ovulating). I'm hating this provera, but hoping it brings on my period sooner rather than later. Once that comes, I'll go into bcp and lupron, and hopefully start stimming again end of July. Part of me wanted to try and switch clinics because of the impersonal, "one size fits all" treatment at RMA, but Cornell doesn't have any appointments until end of summer, and I really just want to move forward with this. I suppose if things fail again, we may try to move on to Cornell, but at that point we'll be out of money, so I'm not sure.
Well, this is getting long, so I'll end it here. I will just add, though, that despite my truly wonderful, sensitive, supportive husband, K., I feel very alone with all this. My best friend got pregnant in October after 2 months of trying, she's due in 2 weeks, and this has basically ruined our friendship, at least for now. My cousin is also due at the end of the month, and over the last year and a half I've watched everyone around me get pregnant, have babies, and move forward with their lives while mine stands still. I feel like time moves on and changes happen for other people, but I am just stuck in cycle after cycle of stagnation and disappointment and heartbreak. I feel like I've fallen off the wheel, and the consequence has really been that I hide away, hang out with my husband, and avoid social situations as much as possible. I just feel like I can't relate to anyone, and they definitely can not relate to me.
Thanks for reading this, and I really do look forward to "talking" with you all! Please do comment if you have some suggestions about what I should ask my doctor now...
Thanks so much,
Jen
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