All About My DES-Ravished Uterus

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[1]. (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[1].
• 3.o to 9.6 times more likely to have a premature birth than unexposed women[1].

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[2].  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.

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[1] Note that I present a range of numbers because different research studies measured different results.

[2] 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.

Comments

[kate #2]

I don't blame you for being in to the statistics...It is your money and your emotions that you are spending in this journey. I think we all have to be proactive in finding out the IF issues we are all facing.

I have read so much about DES women and their problems and am astonished by how many people it affected. Such BS that it could be handed out so freely to pregnant women for so long. Such bullshit....

PS Ok. that just freaked me out that you had me in the knocked up section already!

[Susan / holdingpattern]

Sorry, kate #2, if I freaked you out by reclassifying your blog. To be honest, I did it because my blogroll is automaticlly populated via Bloglines. And I quickly move people from the Fabulous Infertile to the Knocked Up category because I find I need an extra ounce of strength to read pregnancy blogs. I do read them, I just have to be in the proper state of mind first. Sorry. I hope I did not jinx you.

[Emily]

Wow, $150K, that's a lot of money.

I completely understand about statistics, and that's why I'm seriously mulling over not doing and IVF and just moving straight away to donor egg. The stats are just not in my favor (40, can't get pregnant at all, not even a chemical). I've run through all the numbers with my husband who is a stats guru (you two went to the same school, he's class of '88) and it just doesn't really add up for us to spend the $20k when we'll just end up donor anyway.

I'm sorry about the DES. It's very unfortunate how someone else's carelessness (your mom's ob) can affect your life so greatly. Makes me really mad.

Keeping you in my thoughts and thinking of you as you make this decision.

[Nico]

I had never really thought about donor embryos until I read some of the comments on the last post. If you're not tied to the idea of at least one of you having a genetic relationship to your child, then it seems like trying that at least once might be the best option - less time than either domestic or international adoption, sounds like less money as well. And now that an ectopic is much less likely - worth a shot?

I'm totally into stats. (probably the whole school thing). So bring it on!

[Julianna]

Well, I still am leaning towards donor embryo. The entire IVF process is dwindled down to fantastic frozen embryos.........no IVF drama involved.

You will then know the true status of your uterus.

Donor embryo is amazing and extremely cost effective. The cost of a FET is about $3,000.00 including the meds! HUGE difference in cost......if that is a factor.

Enough of my rant on your blog!

[wessel]

Julianna stole my idea write out of my fast-typing fingertips -- it would seem to me that a really smart way to test the waters is to go for donor embryo. The cost is peanuts to those of us who are used to handing out 10K checks like they are pennies. I would also be very wary of dropping 25-30K on a DE/IVF cycle (not sure where you got the 40K from but it ain't that bad yet!) under the circumstances. In fact, under the circumstances, I for sure would NOT do another cycle with my own eggs.

On the other hand, I wouldn't assume that your uterus can't do it for you, not just yet. I have the rarest uterine anomaly, a unicornuate, or UU for short. Read all about it on my blog under Let Me Tell You category--scroll to the bottom since it's an early post. I was a kid at the time and had gotten pregnant accidentally--we had no clue that I had a UU nor did any doctor figure it out until almost 20 yrs later when I insisted on an HSG during an IF workup. Moral of the story is this: I had no pregnancy complications whatsoever and delivered fullterm. Yet the stats show a less than 30%, that's THIRTY PERCENT, live birth rate for UU's, and many of those are premature. I'm sure glad I didn't read those stats before I got pregnant. It could be that I simply got really lucky, or, it could be that the stats are not entirely truthful. You don't know what your uterus can do unless you put it to the test. Your RE would not be suggesting a trial with DE if she really thought you had no hope of successfully carrying a baby (unless she was not thinking clearly during your consult, and it would be easy enough to verify that by asking her again).

I see now why it is so much more complicated. DO/IVF is cheap, and you get a good embryos out of it, and if you find that your uterus can do the job, then you can move on to DE with your husband's sperm for a sibling or two.

[millie]

I've got a local friend who's a proud mama of gorgeous twins through donor embryos. I'm sure she'd be happy to talk with you if you're interested.

I wish I was a patient at your clinic because the wait for ED is so very short.

If you're thinking donor egg, I think you guys should come on safari with us in January. The whole thing is really affordable (about 1/3 of what it would be here). Just sayin'.

[Molly]

Wessel sounds like she's on to something. Could you try an FET with donor embryos? Or would you feel that both of you lacked a genetic connection?

[deborah]

I've got no assvice to offer up, Susan, but I just wanted to tell you how impressed I am with your spirit, drive and determination through this whole process. Not to mention your thoroughness. I wish you quick resolution and some semblance of peace as you work through these difficult questions.

[thalia]

Blimey. What a lot of issues to weigh up. ANd I am completely and utterly stunned by the costs. DE just really isn't an option in the UK due to the lack of donors so it isn't something I have seen the costs of here. But boy is that a lot of money. I quite understand why you'd be looking for alternatives.

I can't tell you which way to go, but I'm here, listening and hoping and wishing you a lot of the right support as you go through this process.

[chris]

I really feel for you. That's a lot of information to weigh.

Take care.

[Pamplemousse]

Susan, I am aghast at the amount of money for GS/DE cycle in California. Man oh man!

Is Millie talking about Tertia's info on SA donor eggs?

Thalia, Bridge in London charges about £6000 - £7,000 for an anonymous DE cycle here in the UK but I am unclear if that includes meds. They have a lot of info on their website.

Sorry to hijack the comments, S! I am hoping that you can come to a decision that is financially/psychologically right for you and your husband. Thinking of you.

[JennyK]

I hope you find an answer soon. I'm not sure if you're even still reading comments to this post, but don't be totally disheartened by the costs of DE + GS. Check out the surrogacy websites (allabout surrogacy, surromomsonline, etc) for more info about women who are willing to be GSes without going through an agency--many women prefer going indy and that would save you a chunk of change.... Just a thought. I don't want you to give up!

[JennyK]

PS: The GS's insurance usually DOES cover prenatal care, labor & delivery.

[JennyK]

PPS: Sorry to keep adding on, but most indy GS's fees are more in the $15k - $23k range as well....