Wednesday, March 21, 2007

Not sure why I'm saving this - so I'm sharing it

Updated with a correct drug name and another study link.

I started blogging long after my last confirmed pregnancy and loss happened. Recently a few bloggers, long-term ones, mentioned how long they had been TTC and been blogging, and I laughed at first, then realized with a shock, I've been doing this longer...and my last pregnancy longer than a chemical of a few days, was in 2004. The blogosphere barely existed back then.

I'm an old fart.

And some of the things you all now take for granted, like getting chromosomal analysis done on yourselves or your lost pregnancies, or using intravaginal prometrium instead of PIO, I helped make those things standard.

(Sounds strange, but all I'm going to say right now, is that I am a a tenacious bitch who threatens to sue at the drop of a hat, and then forces a policy change as a result. Never fuck with an obsessed grieving mother. Never.)

But I don't talk about it all here, and that is useless to me and to my blog friends like you all, who might need to read this or see it or know why I show up on your blog and give out useless assvice. Because maybe it isn't useless, at least sometimes.

(If any scientists reading any of this blog ever, have any corrections, updates, misspellings, whatever, please email me at aurelia dot cotta at gmail dot com, or leave a comment and I will fix it. I want this right if I'm going to save any wanted pregnancies. Thanks for your help!)

One thing I've done is try to fight for better diagnosis of miscarriage and pregnancy loss. There is very little evidence based medicine that researches how often and why miscarriages occur, and designs methods to prevent and treat them. The rule about not diagnosing miscarriage causes until after 3 losses is utter bullshit, based on population stats, but not lab & pathology reports. And that is a crime against all women's health IMO, not just the infertile. I am not a lab experiment dammit!

So, this is the method I will use again if I ever can get a damn egg out of my ovaries, and persuade it to speak to a sperm. I doubt I'll ever need it, (*sob*) so maybe you guys can use it?

First thing is, that chromosomally damaged pregnancies can't be saved using these meds. And lots of losses, especially early ones that do not show a heartbeat or movement or growth, are chromosomal. But lots aren't. Many miscarriages, premature births, stillbirths and things like IUGR, quite often can be a result of placental dysfunction, clots, calcifications, inflammation, improper formation, etc. (not always, but sometimes)

My endometriosis adhesions could have caused the my placental inflammation, or a gene I have called PAI-1 4G/4G, which causes reduced fibrin clearance. In other words, my blood doesn't sweep away the crap that accumulates when something tears in my body. ( a cut, a scrape, a placenta attaching to a wall, etc.) It's sort of like having the opposite of hemophilia, ie. too much clotting, as opposed to not enough. This gene and endo have been linked, but because of epigenetics, (what happens to you in your life like your environment, viruses, infections, or medical conditions can switch your genes on and off, therefore, biology isn't destiny) I don't put much stock in the idea that we are helpless against our genes.

For example, this gene can cause death in sepsis in meningitis and pneumonia. In fact, most people don't die from these diseases, but the ones who get very ill, quite often have this gene. But we have vaccines for those things, so I got the pneumovax shot, and meningitis (Mena.ct-ra) shots, and I no longer worry about the gene in that respect. I'll keep getting any new shots I find, and I go to a cardiologist once a year for checkups. Is there a fix for this gene in pregnancy? Not a fix precisely, but a treatment protocol I dreamed up with my RE's help.

I know about the inflammation on my placenta, because I hired a placental pathologist look at the remains of both my late miscarriages. Her name is Dr. Carolyn Salafia and she is at Early Path Consultations here.

She has lots of scientific info on her site about placentas and pregnancy. I love her to pieces!!!

Anyway, basically the idea is that as soon as you ovulate or transfer an embryo you start using hcg (as a micro dose shot, 1000 iu/day or 3000 iu/every three days & not just as a trigger), baby aspirin, progesterone, prednisone, and folic acid. This study describes one version.

After confirming pregnancy, (2 successive blood hcg tests, inbetween micro hcg shots, beta goes up you are preggers, down you aren't), you switch the aspirin to heparin and keep it all up for the first trimester.

You check the progress of the placenta formation by doing weekly early dopplers on the uterine arterial blood flow.

In the second trimester you continue the heparin, use weekly progesterone shots (17-hydroxyprogesterone caproate) study citation here instead of suppositories or prometrium and continue folic acid. Prednisone can be stopped when you feel comfortable with the doppler numbers and your blood pressure stays nice and low.

It's not too late for people to get a report from Early Path, if your losses occurred even a few years ago. Slides from every placenta & birth or pregnancy loss, even terminations, are always kept for 10 years by law in most jurisdictions (Canada & US), so you could ask your hospital or Doctor to send slides and whatever paper records and test results you have.

I know this all sounds complicated, but it's easier than delivering dead baby after dead baby, until you get a live one, and a hell of a lot less traumatic I think.

I'm going to explain more about some of this in subsequent posts and what has happened to me in the past. I just can't write anymore today.


  1. Yes, so much is unfair. I do wonder, though, the coincidence of people like you and me having these lesser known afflictions. We delve. We push. We educate, ourselves and others. We get the word out. We change policies.

    The gender inequality continues to make me incensed. Why is sperm analysis covered, but egg analysis isn't?

  2. Damn, you are good.

    I wish you didn't know all of this because what you have been through, that is just not fair.

    This is impressive info. I have a question for you, though. You say in the second trimester to switch to medroxyprogesterone. This is the same stuff that is in Depo-Provera. I had a shot of that stuff when I was 18 because of recurrent ovarian cycts. I was allergic to the carrier and spent 3 months in a living hell. What would happen if you can't (or refuse) get near that stuff. Would PIO work? Or some other form?

    Thanks so much for posting this, Aurelia. I hope you get the opportunity to use this protocol again.

  3. Fascinating. I only had one miscarriage, but it still bugs me that it was pretty much dismissed. It was an early m/c, after seeing a heartbeat on u/s, after IVF#1, and was just chalked up to bad luck, probably chromosonal. It was a natural m/c, so no tissue to test.

  4. This is all very interesting- it's so important to have women like you who are willing to fight for better women's health policy and research. I think it's shameful how things get funded and why, and how little research on human reproduction is done. Sure, lots of people get cancer, but half the population is female.

    Of course it's a tad hypocritical of me because my lab's grants are part of the NIH's cancer money...

  5. Reality, I fixed the name of the progesterone. I was cutting and pasting and stuck this in the wrong post.

    I think this is the same kind used for PIO but different clinics use different versions. Some get labs to mix their own custom generic versions. ie. Prometrium has peanut oil, and some women have allergies, others have soybean oil, etc..

    And Jenny, it isn't hypocritical! Women get cancer too...sometimes from pregnancy, like molar pgs, and sometimes our reproductive choices influence our risk of cancer. It's not a zero sum game...we could research everything IMO.