Tuesday, November 14, 2006

problem solver me

I keep thinking there's something I've missed.
There's some little trick, a little twist and if I could just figure it out I would have a better cycle/better embryos/that elusive second line.

So despite the fact that I've been to 5 clinics and seen god knows how many doctors, I keep thinking that if I read enough journals, scan all the abstracts from scientific meetings, consult with all the specialists (ahem...that's you folks) I will figure IT out.

Because surely there's a reason for everything, right?
And it's just a matter of finding the problem and fixing it. Right?

So.....to recap.
7 cycles on my own, 2 of which were cancelled.
2 + 3 + 2 + 4 + 3 = 14 embryos altogether.
Not a single one has stuck.
Some have been 'perfect' (beautiful 7 or 8 cells with no fragmentation); others have been grade II but they are never 'bad'.
Lining is always 8mm or more.
HSG shows no uterine abnormalities.
Blocked tube may have been affecting implantation but the tube was been clipped almost a year ago.
2 Laps to remove endometriosis.

1 DE cycle
3 8-cell, grade I embryos.

Every fricken cycle has been negative. The highest beta reading I ever had was 8.

Sparkle mentioned the Miscarriage Management Program. When I searched around for info I found this great website which got me thinking of the possible issues.

Blood Clotting disorders
They have run a thomophilia panel on me (between cycles 6 and 7).
Everything came back normal.
So it's not a clotting thing.

Chromasomal abnormalities
Well..this is tricky.
There are never enough embryos to do PGD on so that's out of the question.
My husband had been checked for a couple of genetic markers and they came back negative.
There's nothing else to go on (ie. family history) so what else would they test for?
How could all 17 embryos to date have been genetically abnormal?
Shouldn't the more recent ones (from younger healthier eggs) have been normal?
My first IVF cycle was at age 34. Could my eggs have been crap (genetically) even then? But how that does explain the DE failure?

the Uterus
2 HSGs, 2 surgeries and a gazillion ultrasounds.
The uterus appears to be fine.
But what about the beta3-integrins?
I've been thinking about this. I'm not convinced...and I"m not even sure how to go about investigating this since the people who test/diagnose this are in the US and I am not.
From what I can gather, the fix is to take Depot Lupron for 3 months. This can resynchronize the expression of the integrins.
Well...I was on Depot Lupron.
Okay it was 2 shots (2 months) not 3. But that should have helped, no?
Does it have to be 3 shots?
Should I ask for 3 in the future anyway, even if I'm not tested for beta-3 integrins. Can't hurt, right?
And, it's supposed to help quiet the endometriosis. Which is why I took it for 2 months in the first place.
Are the hypercoaguability panels checking for uterine function? Is this a standard thing I can ask an RE for?

The Endometriosis
See above.
The Depot Lupron was supposed to help.
Lots of people with endometriosis get pregnant. I've met them and their babies.
So that's not the only issue.

Immune Disorders
I don't know. I really don't know.
If this was the answer wouldn't they be checking immune issues for all women?
Why is the research so equivocal?
Where the hell is the research to back this up anyway?
I don't know if I can deal with the expense of dealing with one of the US groups that does the immune testing.
And it's begining to feel like I'm grasping at straws.
What exactly is the deal with immune testing ?

Other things....
Corticosteroids (prednisone, medrol etc)
Are supposed to help with implantation by suppressing the immune system.
I did take medrol with cycle #7.
Anyone know more about this?

Asprin, vitamins, acupunture, yoga, relaxation etc.
Yes. Did that.
No. Didn't help.

Liana suggested the possibilty of a gestational surrogate.
To that I say aaaaaiiieeeeee
I just can't contemplate that right now.
In Canada is even more impossible than the DE route (shockingly there are not many women out there willing to gestate a baby for 9 months without any compensation). But it's not just that.
I want to be pregnant.
I want to carry a baby and give birth and have stretch marks and gain 50 pounds and complain about my swollen ankles.
I want that.

I am asking for any and all assvice.


At 2:49 PM, Anonymous Anonymous said...

Hi NinaB

I'm Canadian too and I hear ya about the difficulties of doing DE here.

However, I don't think immune testing is done only in the States. I recently was tested for every immune disorder known to humanity. I was skeptical because I'm 40 so surely my miscarriages were age-related? But it turns out I do have an antithyroid antibody (as well as being old). This can play a role in m/c but can also prevent pregnancy from occurring.

I really think you should get some immune testing. I was put on both Medrol and Heparin, somehow they were supposed to work together to manipulate my immune system. I did get pregnant though still don't know if I'll stay that way - and have no idea if the new drugs made the difference - but it can't hurt! If you want the full list of autoimmune tests I had, email me and I'll send it to you. I have put my email address in the field for "Web page," but if that doesn't work and you want to reach me, post a comment.

I don't think you are grasping at straws - you are pursuing every avenue, which is the right thing to do when it's something you really want. If you wind up moving on to adoption or whathaveyou, it will be with the knowledge that you did everything you could.

At 4:46 PM, Anonymous Anonymous said...

Wow - you found my exact program!
This was a fantastic - the results pages of all theses tests has basically become my introduction to doctors!

What was good about it was the full cycle monitoring - so they tracked all the days up to ovulation then following - after that a biopsy to see if any possible reason for implantation failure.

I did come back with slightly elevated ACA's - so my treatment is now heparin from transfer. My current doctor is also okay with aspirin.

Unfortunately my subsequent failures would seem to be related to embryo quality.

Sigh - so I am in the same position - hoping the better quality eggs from our donor will stick.

There must be a similar program to this at one of your clinics - obviously you might not need all the tests?

At 6:00 AM, Anonymous Anonymous said...

I think that until you have several failures from a donor, you can't be certain -- or even seriously consider -- that the problem comes from something other than a combination of embryo quality and bad luck.

This sucks, I know. But whereas your own eggs' subsequent failures do point to (at least an) embryo quality problem (especially given that there were not too many oocytes retrieved, and two canceled cycles) a single failed donor cycle doesn't really point to a problem except for bad luck. Even in the best of programs, IVF is not successful most of the time, so I think that for now you have to attribute the donor cycle failure to bad luck, or rather not good luck.

I know that this is all the harder because your donor was your sister, and it's difficult (or even impossible?) to ask her repeatedly. Given that she has not successfully done IVF herself, or donated before, it's hard to know if her aggs' chances are average, or also impaired. But in the absence of some identifiable problem, only several failures with a proven donor will truly point to a problem on your "receptive" end.

I know you have said the genetic connection is important to you, and you may not decide to go the route of a non-related donor, but you implied in your post that you were open to a "next time." I am glad of that, and do think you should think of all possible options, and all possible tests. I do believe that if you continue, you will get there.

At 7:54 AM, Anonymous Anonymous said...

Nina, for what its worth, I don't think that it had anything to do with doing 2 shots of depot Lupron, not 3. My US clinic (CCRM) routinely does 2 instead of 3 with similar results. I did 3 because I was pulling out all the stops, and for timing reasons. Sort of your thinking; If 2 is good, 3 is better. I can't read your post and comment, but if I can think of anything else, I'll let you know. Hugs.

At 11:18 AM, Anonymous Anonymous said...


I'm sorry if I suggested something before you were ready to hear it. One must tread lightly when someone is dealing with IF issues. Believe me, I know.

I just wish I had a better suggestion for you, but I don't. I'm not as up on all the other possibilities.

I'm sorry. I'll just shut my trap now and wish you the best.

At 11:29 AM, Anonymous Anonymous said...

What your sister did for you was incredibly generous, so I don't mean to suggest that it wasn't somehow enough. But . . . how many eggs did your sister produce? It sounds as though her cycles were similar to yours. If that's the case, she might have similar issues. I know it's difficult to find donors in Canada, but I think I'd be looking for a proven donor.

Hang in there. I've followed your story for a while and you've been through so much. Here's hoping for a better 2007.

At 4:18 PM, Blogger Lut C. said...

I have no advice for you, I'm afraid.
I'm way out of my depth.

At 7:45 AM, Blogger ninaB said...

JMW- I can't find the link to your email address. Pleas trying sending me a message at reveuse.n @ gmail.com and I'll write back.

Sparkle- I thought that might the right program! I am hoping I can convince my new RE to do some monitoring. What do they look for with the biopsy?

Anon- I appreciate your comments. I had a very long talk with my doc at Cornell after cycle 7. He was convinced that, although I had an egg quantity problem (because of low reserve due to having 1 plus a bit ovaries removed) that he saw no indication of a quality problem. My sister's response was really good. There were 16 mature eggs. All fertilized right away without ICSI. Not all embryos were perfect 8 cells, but they were very happy with the quality.
I am open to an Anon donor route...but also know that realistically it's not easy to find donors of my racial background.

Lynette - thanks, it's reassuring to know that an additional Depot Lupron shot probably wouldn't have made a difference.

Liana- Don't be sorry!! I truly value your input.

At 9:20 AM, Blogger Krista said...

Nina, I have read this post a dozen times trying each time to think of something helpful to say. I just can't think of anything.

I do agree though that if the donor cycle went so well, it could have just been bad luck. With that many fertlized eggs I am hoping that you have some frozen to try. Lot's of people with unexplained infertility do not succeed on the first IVF but have success with frozen cycles or subsequent cycles.

I know that is not helpful. I so truly want this for you. I hope that 2007 is a much different year.

At 5:30 PM, Blogger Thalia said...

I'm with krista, have read this loads of times but can't find anything helpful to say. I will say that one donor cycle does not an impossibility make. Even a young 26 year old with an FSH of 2.5 and tubal problems does not get pregnant on every cycle. So I think it would be worth considering another donor cycle if you feel up to it - and if your sister does.

I don't know about the other stuff, sweetie. It's not proven. It might help, it might not. Some of it might be worth a try but it's hard to tell what. The doc I saw recently who I liked did seem to thikn there might be something in the immune stuff, but ask how they do the assay - does it really test the cells reaction to uterine tissue?

At 9:30 PM, Anonymous Anonymous said...

I'm just glad to hear from you again.. It's good to have you back


At 2:57 PM, Anonymous Anonymous said...

Checking in to see if you've had any success with your research. I hope so!

At 4:23 AM, Anonymous Anonymous said...

Hi NinaB, I am interested what's Cornel's opinion on immunology testing? May I kindly ask you to send me the list of the tests from jmw to my email tgueorguieva@yahoo.com , please. Thank you.


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