Monday, April 28, 2014

"The Woman with the Thin Lining" - UPDATED

The second part of my consult with Dr. March was on Friday. On one hand, I came away with it knowing I had the advise/knowledge from an expert in the field of Asherman's Syndrome. On the other hand, he said I'm going to be "a tough nut to crack". Probably not something I necessarily wanted to hear. He believes that there is most likely significant damage to my uterus.

Based on all the records he has, he believes that the best thing to do now is to go forward with a protocol that he's seen success with. He called it the "all guns blazing" protocol. The good news is it isn't far off from what Dr. G and I just decided on. It's just a few tweaks. For anyone else that may be dealing with a chronic thin lining, I'm going to post it here and also on a tab in my blog so that it's easy to find in the future.

Dr. Charles March - Protocol for women with thin lining:

1) Ultrasound of ovaries on cycle day two
2) If no cysts, begin Estrace, 2mg three times per day
3) After 10-14 days of treatment, repeat ultrasound, focusing on ovaries and endometrium
4) If lining is at least 5mm, and follicles are in synchrony with respect to size, measure estradiol and progesterone in blood
5) If progesterone is less than 1ng/mL, begin stimulation with injectable fertility drugs and continue Estrace at the same dose
6) Monitor follicle development as per the doctor's usual routine and measure estradiol and uterine lining at each visit
7) As the estradiol level in blood begins to rise above the noted prior to beginning the fertility medication, begin to tapir the dose of estradiol
8) Administer HCG when follicle maturity (and hopefully a good lining) has been achieved

After step 8, either insemination or IVF with recovery (or transfer in my case)

In addition to the protocol above, he is recommending that after the HCG injection and eggs are released, G-CSF (Granulocyte Colony Stimulating Factor) should be administered as a "uterine flush".

Dr. March sent me the protocol so that I could share with Dr. G. I sent Dr. Gustofson a long email Friday morning. This is where it's always weird, because I obviously trust my doctor, but at the same time, here I am asking him to change his protocol based on the opinion of someone else. Dr. G has always answered my emails within 24 hours. So far, I haven't heard a peep.

I also received the results of my most recent TSH/T4 labs. I've been on Synthroid for the past 5 weeks and my levels have dropped from 4.76 to 1.28. Which is great news! When I emailed my nurse at CCRM on Friday she said she had received the results and was waiting on Dr. G to review. Another reason it's odd I haven't heard anything. So now he hasn't responded to my email OR my labs.

There goes my mind…freaking out, worrying that I've offended my doctor and he's completely written me off. Awesome.

I'd be lying to say I'm not a little disappointed that Dr. March didn't have some elaborate plan to "fix me. Rather…I'm feeling a bit "unfixable" at the moment.

To top it off, someone posted this on Facebook this morning, and my heart died just a little:



So many obstacles have stood in our way. Should I read the signs and acknowledge that I should be letting go?

Update since my original post:

Dr. Gustofson did finally get back to me last night. He is more than happy to do an estrogen priming followed by a stimulation FET as there isn't much difference and it may have some improvement. However, CCRM did a study with 40 women with thin lining using the GCSF uterine wash and only 2 had improvement (5%) so they have since abandoned that protocol. He is willing to do it, just doesn't believe it will help. 

I appreciate his honesty. 


30 comments:

  1. No way. You keep the fight until you yourself no longer feel it. Don't let someone else tell you not to fight. This is going to be the toughest fight yet so maybe someone is testing your faith/strength. You are strong and a fighter.

    I don't think your doctor is mad at you. I bet he's either busy or wants to really think, research or consult a colleague about your new protocol tweak. And if he is mad - F him. It's your body, your embryos and you have to be your own advocate.

    I'm so rooting for you. I have my Pom-pom's and my Suzanne sweater and I'm standing on the sidelines. Give me an S...... :)

    XOXO

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    1. Thank you! Pep talk (and cheers) appreciated for sure! I've been hoping that Dr. G is consulting with the other docs at CCRM, but would have been nice, if that was the case, to have at least responded!! I'm an infertile for crying out loud. I've already got enough crazy going on in my head!

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  2. Do not let go! You're a fighter and this fight is not over yet! I'm in your corner. You have gone through too much and worked too hard to give up now. Don't get discouraged. I feel like your new protocol (with the tweaks suggested) is encouraging, right? Keep on pushing forward, girl. You're a strong woman and this is not over!

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    1. Thank you so much. You're too kind and I appreciate you always cheering me on!! xoxo

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  3. Don't take any heed of anything on Facebook. If I did, then I apparently I like cancer, like child abuse and hate Jesus. Don't worry about your doctor, he gets paid lots of money to allow for a little dent in his ego. He's probably just researching if Dr. March's suggestions are supported by research. This sounds like solid plan! Feel confident!

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    1. Ha. Thank you for that reminder. I loved the quote, just kind of felt for a minute it was directed right at me!! Dr. G wasn't offended, thank goodness.

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  4. I think it's a beautiful quote. BUT, I really and truly believe that if you were meant to let go, you would feel it. I always questioned whether I was pushing too hard to become a Mom, but in the end I decided that just because my path to parenthood is longer/harder than others, doesn't mean its not in my destiny. I think as long as you feel the calling in your heart to be a Mom, you should keep on fighting. xo

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    1. Thank you. You've always been such a supportive friend in my corner and I appreciate your words of encouragement still. xoxo

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  5. Nope. The letting go WAS NOT for you. I know it. There is no freaking way your desire to have a child and the fight this far is something you should just let go. Awhile back I posted this concept (stolen from the Portland Trail Blazers) called "pounding the rock." The idea is you have to keep hitting the rock and eventually it will crack. What if you walk away and the breaking point is just 1 swing away? I know, I know, we have been pounding the @!%%@#%@% for EVER!! I feel you, I get it, I know it 100% sucks. But until my body/heart says in a very clear, obvious, peaceful way that I know "not meant to be" I will be pounding that @!%@#% rock till I die :) Love to you. Don't give up. You have some dreams on ice for a reason. Whether its you or a carrier, they are yours.

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    1. Thank you for this reminder. Sometimes we just need that little push to keep going when it feels like so much is stacked against us. I know this will turn around for both of us. I just wish it was sooner rather than later! xoxo

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  6. I agree! Do not give up, do not let go. You are a fighter and you will fight your way through this! I also think that if you were to get to the point where you were ready for the next step (something else), then you would know it deep in your heart and in your head. You are on my mind all the time and I am rooting for you my sweet friend!

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    1. I certainly won't give up, but sometimes I have days where I definitely need a push! So thank you for giving me that in your kind words! xoxo

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  7. These are "road work ahead" signs not "dead end" signs. It might just be a detour on the road you're traveling. Enough metaphors... Hang in there sister and keep trying.

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    1. SERIOUS "road work ahead". Great way to put it though! Thank you!! xo

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  8. "gracefully letting go of things not meant for you".... I don't think this applies to you. You are meant to be a mother. There's a way out of all of this for you, one way or another.

    It sucks that the doctor didn't get back to you right away. Maybe he's putting on his thinking cap to come up with something really good for you. I think they forget about how excruciating the wait is on the other side.

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  9. Do not give up. And don't worry about Dr. G -- you are paying a ridiculous amount for his best judgment, and he better be consulting with other doctors at CCRM or elsewhere to give you the best care possible. Here's the thing about letting go: it's all about the stage of life you're currently inhabiting. Now is not the time to let go. Now is the time to grab life by the balls and own your determination to be a mother.

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  10. I know how you feel about offending your doctor. I have been a little worried about that too recently as I am thinking about switching.

    I am hoping that this protocol is exactly what you need that will "fix" everything. It is so so hard to decide what to do! Don't listen to Mr. Buddha though! Do what you think and feel is best for you!

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  11. I'm bummed that Dr. G hasn't gotten back to you, but try not to read into it too deeply (though you know I would). He certainly shouldn't be offended that you wanted a second opinion... he knows what you're up against and he also knows how incredibly valuable those embryos are to you. You want to give this the VERY best chance of success possible. I'm hoping he feels good that the protocols are so similar.

    You know that I'm your BIGGEST cheerleader, and maybe this is affected by where I sit in my own journey, but I don't think switching to a gestational carrier is giving up. I'm desperately hoping that you won't need one, both for monetary reasons and because I know you want to be pregnant. But I don't want you to ever think of yourself as a failure or as a quitter if you decide to move to a GC... you are one of the strongest women I've ever known. I have full confidence that you and T will do what you need to do to bring your babies home.

    BUT, until that day, I'm hoping for BIG THINGS from this protocol! Any special number you're hoping for?

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  12. I can't imagine it's a great thing to be called a "tough nut to crack", although it may validate your feelings on some level. But still, where is that magic cure I was dreaming of for you?
    It's reassuring and much to your advantage to be working with such an open minded RE. He could have gotten his ego all bruised up over your visit to the Asherman's expert, but instead, he accepted the new protocol and gave you his opinion on it. I think you are in good hands with Dr. G.
    That is such a beautiful quote from the Buddha's life. I've read it before, but I needed this reminder right now. Thank you for sharing it. You are doing such an amazing job at being loving, gentle and graceful. I hope you give yourself credit for those amazing qualities you hold.

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  13. Glad to hear Dr. G got back to you. Don't read into those "signs" from a quote. You've come this far. Don't stop now!

    I've gotta admit, it kind of blows my mind these dr.'s are still so intent on using wimpy little estrace to start the cycle off. Sounds like the stims will be your "guns blazing" though, so that alone has got to make a difference once they come into play. Always pulling for you Suzanne. I hope those stims make all the difference in the world and get you where you need to be!

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  14. Sorry to hear about this doctor. Even when you don't have the energy to find - the Lord fights for you. I'm standing and believing girl!!! I haven't given up for you!! It's so understandable that you are weary, but God is there to hold you when you don't feel like fighting xoxo

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  15. Just keep swimming ( Dory - Finding Nemo)

    You have come too far to stop now! I will continue to pray and keep cheering for you guys!

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  16. I have no experience with this, but I am hoping that everything falls into place and your lining is perfect :)

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  17. Don't give up! Don't let go!! I'm praying this will be the winning ticket :)

    waitingforbabybird.com

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  18. Glad u heard back from Dr G. It was nice of him to give u his honest opinion and still allow u to continue with what u asked. Praying that this is ur magic protocol and everything works out. Still cheering for u Suzanne. I'm not losing hope for u and keep u in my prayers every night. U are a strong beautiful woman am u deserve a happy ending. Hugs!

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  19. That quote...wow. I can see how it hurt to read it. But don't let it get you down too much. Quotes like that always sound so great and wise, but they are so incredibly general. Buddha was not thinking of you and your specific story when he said it. Something in you is telling you that you are meant for this, and that this is meant for you. Trust that.

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  20. i think its good that your dr at CCRM is open to trying it even though he doesn't believe in it. who knows, you may be like those 2 women it actually worked for, you never know. if it doesn't hurt anything, then why not? good luck!

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  21. Ah, the Buddha quote. I think the people who judge us for going through various ART procedures are thinking "why can't you gracefully let go? What is wrong with you?" I don't think those words are meant for you right now. Because even people like Byron Katie (not a Buddhist, but a letting-go thinker) say about medical treatment: You pursue the best treatment you can find, with the best doctors you can find, you do everything in your power to heal what ails you, all the while letting go of your attachment to outcome. So it is working toward manifestation while letting go of expectation. It took me years to understand this distinction! ~theunexpectedtrip

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  22. *hugs* I'm so sorry Suzanne, I do think at this point it's worth a shot to try it, maybe, just maybe ti will work. I've been thinking about you a lot lately. I'm so sorry for everything you've had to deal with. This is so damn unfair!

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  23. I'm so glad that Dr. G is willing to try this other protocol. No regrets, my friend. You've gottta try everything. That Buddha quote wasn't meant for you. But these are "most people give up right before they would've achieved success" and "there is always a solution. you just have to keep trying doors until one of them opens". And ONE will open, my friend. Hugs.

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