I so appreciate all of your thoughts regarding what we should do next (see previous post). It is really helping me sort through all this. Please, keep it up. You've given me a lot to think about and asked me a lot of important questions, many of which warrant their own posts.
I'll start with Wessel's question: Why did I list option #5, "donor eggs/embryos plus a gestational surrogate?" The answer might change your ideas about what we should do. I'd appreciate your thoughts on this. Really. It would not be assvice.
We do indeed have reason to suspect that my uterus might not be able to sustain a pregnancy, even though I've never had an intrauterine pregnancy. I am a DES daughter, meaning that I was exposed to diethylstilbestrol when my Mom was pregnant with me. Her effing OB was a lazy ass who didn't keep up with the medical research, because even in 1970 they knew that DES not only doesn't prevent miscarriages, it actually increases their incidence.
For women who were exposed prenatally, DES is linked to 1) cervical cancer, and 2) abnormalities of the uterus and cervix that make it difficult to carry a pregnancy. To quote one source "[DES Exposure] does not mean that DES daughters cannot and do not sometimes conceive and deliver normally, but the possibility of problems is very great."
The most obvious manifestation of DES exposure is having a "t-shaped Uterus." Soper of Uterine Wars has a t-shaped uterus and maintains an excellent informational blog about this kind of anomaly. Not all DES daughters have this anomaly, however, but their chances of getting and staying pregnant are still reduced because of unfavorable changes in the uterine lining.
Due to the DES exposure, my uterine shape is not normal. It is not a classic T-shape, but is about halfway between T-shaped and normal. Check out the below diagram, which I cooked up based on my HSG films. My medical records say my uterus has "irregular margins."
DES exposed women with an abnormality of the cervix or uterus (which I have, although not as severely as many) are:
- 5 to 13.5 times more likely to have an ectopic pregnancy. (The theory is the uterus is inhospitable, so the embryos implant in the tubes instead. Note that I've had two ectopics.)
- 1.5 to 2.6 times more likely to have a miscarriage.
- 3.o to 9.6 times more likely to have a premature birth than unexposed women.
The research shows that, even with DES exposure and uterine anomalies, if you manage to get pregnant, you have a 61% chance of delivering at full term compared to 80% for unexposed women. The odds are still in my favor. But I personally don't know anyone who is DES-exposed who has succeeded. Getupgrrl is the blog world's most famous DES daughter, and she ended up using a gestational surrogate due to repeated miscarriages. It seems likely that Soper was DES exposed due to her uterine shape, and she ended up adopting Moonpie from Kazakhstan.
When I first saw Dr. Blond in August 2004, she strongly recommended against transferring more than one embryo because she felt my uterus was not capable of sustaining multiples (turns out this did not become an issue since I am a poor responder). She also encouraged us to line up a high-risk OB (which I didn't do because I felt it was jumping the gun). Furthermore, about 6 months ago, she told us she did not think I was a good donor egg candidate due to my uterine shape, poor lining, and DES history. Now, however, after 3 poor response cycles, she is talking donor egg again, provided we're willing to accept the low odds.
Part of me thinks it's beyond risky -- stupid, even -- to spend $30K on donor egg when statistically we have a significant chance of a bad outcome. But then again, I really want to be linked to my child in some fashion, be it biologically or gestationally. In California, a gestational surrogate plus an egg donor is somewhere in the $100K-$150K range. That is just too much, and is infeasible unless our friends and family help us by donating their eggs and writing 9-month leases on their wombs. And boy, talk about asking for a favor!
Bottom line, however, is that we just don't know whether the increased miscarriage and premature delivery risks apply to me since I've never had an intrauterine pregnancy.
So now you see our dilemma. I think we'd (or at least I'd) move on to donor eggs or embryos once we scraped up the money if it weren't for all this DES crap.
 Note that I present a range of numbers because different research studies measured different results.
 My notes from a recent RESOLVE conference breaks down the cost of donor egg plus a gestation carrier in California as follows:
- $25K-30K fee for the gestational carrier
- $20K for the gestational carrier's agency
- $10K fee for the egg donor
- $10K for the egg donor's agency
- $10-20K is the cost of the IVF cycle and embryo transfer
- $5-$40K for the gestational carrier's prenatal medical expenses
- $20K-30K for the labor and delivery (Insurance typically excludes L&D costs for gestational carriers)
- PLUS: reimbursing the GC for any lost wages or childcare costs that result from pregnancy complications or bed rest.
PS - I feel a follow-on post coming on, one detailing the DES pregnancy outcome stats based on the original data from the various studies, because I am a super analytical nerdand a half. But it would probably bore the hell out of you.