Long Update

rockpaperlove

Good morning ladies!

We completed our ODWU this past Friday...

Overall, our experience exceeded our every expectation. The staff. Our nurse. Our doctor. The facility. Every detail of CCRM was top notch impressive. They are the real deal, no doubt about it.

We arrived on Thursday, explored downtown Denver, had an early dinner at a hipster restaurant called Linger, then went to bed early to rise early for our long awaited first day at CCRM.

We arrived at 6:45 to check in for our orientation at 7:00. From there, it was a whirlwind of back to back appointments. Here is where things got interesting:

I had my ultrasound appt with the ultrasound tech mid morning, which determined that my blood flow through my uterus was great and I had a decent antral follicular count, but there were some red flags pertaining to my ovaries and the surrounding area. She even mentioned possible signs of endo based what she saw and I replied...this may sound strange, but I am glad to hear you say that because I have always speculated it, but I was never diagnosed with it. 

There are three reasons we chose to travel to CCRM...their stats, their lab, and their insistence to write the plot before writing the book. Meaning they require a very extensive workup at a hefty price, but for someone who is STILL unexplained - this was very important to us. I didn't want to spend another penny on cycling without getting some definitive answers first.

Back to the workup, the ultrasound had some red flags, which prompted Doctor Schoolcraft to request a second HSG. The last one I had was over two years ago. Two years ago, the HSG was found "inconclusive". My right side cleared perfectly, but it was concluded there was a poor photo take on my left side and my previous RE deemed it ok from what he could see with little skepticism. I trusted the professional who has seen a gazillion HSG reports. 

CCRM was able to squeeze me in for the repeat HSG at 2:30 after we completed our scheduled back to back scheduled appointments from 7:00 to 2:00. I was mentally and physically spent, but - what was one more speculum and catheter at that point? Omg. 

The ah ha moment: my left tube is blocked. It showed on the photos as a big fat fluid filled sausage. Just gross. The news is bitter sweet. I am so pleased to have left that day with a big answer in our pocket, but I am so utterly disgusted this was not caught TWO YEARS AGO.

Doctor Schoolcraft mentioned prior to the HSG test that if indeed there is a blocked tube, it could be a significant reason for our lack of success. The fluid that backs up in a blocked tube becomes toxic and flows back to the uterus and kills anything that tried to implant. I am so sad for my past embryos and all the time, money, and emotion - wasted, but I look forward to getting this resolved ASAP. I just want it fixed. 

And, I deeply despise my previous RE for ruining two years of my life. Our life could possibly be so different if only he had that HSG repeated, but instead he cycled me time and again pocketing tens of thousands of our dollars doing a half ass uninterested job. I am numb in disgust, but focused on the positive of pressing forward and thankful we are finally getting answers with Doctor Schoolcraft.

Wow. This turned into a novel. Thanks for listening - if you got this far... 

joules12

So happy that you had such a good visit with C.CRM and that you're pleased with how everything went, RPL!  That said, I'm sure the news about your blocked tube is incredibly bittersweet.  I'm so angry on your behalf (we've had some issues that prior RE missed, but nothing so egregious as what you're dealing with).  I'm sorry that you have all those wasted cycles and that you have to work through the emotions that come with this news.  I'm glad that you've got a new (very competent) RE to move forward with and that you will have some new plans to focus on.  (((hugs))), lady!

rockpaperlove

Thank you for your support now and always Joules. It has been a tough journey for both of us. I am rooting for you. For us. With all my heart! Big hugs back at ya. 

luvboston

I am devastated for you and please go to every doctor rating site and right a review no one should have to go through what you did. I am happy you are at CCRM and with Schoolcraft he is the best for your issues. I would have gone to him if he was a Reproductive Immunologist. GL with the blocked tube!

Scoop77

I'm happy to hear you're getting the kind of treatment you need and deserve, but it's so frustrating to feel like you've wasted time with previous REs who used up your time/money/emotional energy on bad protocols! I know exactly what that's like, unfortunately. Rooting you on!

PrettyAccountant

Hey Rock I am sorry that your previous RE was such a POS and led you down a path that had a lower chance of success. I know it is easy to say at least on my part but that is the past and now it seems they have discovered how to increase your chance for success for the future. I am so happy that they found something something that will help you get your take home baby. I am very excited for you!

DoublePortion

PrettyAccountant:

Hey Rock I am sorry that your previous RE was such a POS and led you down a path that had a lower chance of success. I know it is easy to say at least on my part but that is the past and now it seems they have discovered how to increase your chance for success for the future. I am so happy that they found something something that will help you get your take home baby. I am very excited for you!

This! Best of luck RPL!!

rockpaperlove

luvboston:

I am devastated for you and please go to every doctor rating site and right a review no one should have to go through what you did. I am happy you are at CCRM and with Schoolcraft he is the best for your issues. I would have gone to him if he was a Reproductive Immunologist. GL with the blocked tube!

Thanks Luv for your well wishes...I hope 2013 brings us all we have ever wanted through the assistance of a true professional! 

rockpaperlove

Scoop77:

I'm happy to hear you're getting the kind of treatment you need and deserve, but it's so frustrating to feel like you've wasted time with previous REs who used up your time/money/emotional energy on bad protocols! I know exactly what that's like, unfortunately. Rooting you on!

May our new RE's make our dreams come true!! Hugs and thank you for your support!! 

BzeetyD

So happy you were impressed.

CC.RM will look under every rock (haha!) and in every nook and cranny before they begin.

Hope you can get your tube situation fixed up ASAP.

Keep us posted!

rockpaperlove

PrettyAccountant:

Hey Rock I am sorry that your previous RE was such a POS and led you down a path that had a lower chance of success. I know it is easy to say at least on my part but that is the past and now it seems they have discovered how to increase your chance for success for the future. I am so happy that they found something something that will help you get your take home baby. I am very excited for you!

It is a good feeling to have a missing piece to this "unexplained" puzzle, finally. I will get the rest of the results of our workup in the next week or so. Hopefully more pieces will come together and maybe just maybe we will get what we have always dreamed of - a lasting pregnancy out of it all. I am hopeful and thankful for what CCRM has already done for us in one visit. Hugs and thanks for your support!! 

rockpaperlove

BzeetyD:

So happy you were impressed.

CC.RM will look under every rock (haha!) and in every nook and cranny before they begin.

Hope you can get your tube situation fixed up ASAP.

Keep us posted!

Thanks B! How long did it take for all of your results to come in?  

AmCheri

So glad that CC.RM is taking such good care of you.  It's a hardship on you to travel, but your commitment is worth it. You're already getting answers and good direction!  Keeping you in my thoughts and rooting for you as always.  GL sweets!

Mrs.McIrish

What  a shame that the prior RE could not diagnose a bad tube! That seems like IF101. It is sad to see this as so many people just don't have the resources to go to CCRM and rely on other crappy REs who don't do their job. I hope this fixes it for you and you will get your baby soon.

rockpaperlove

Mrs.McIrish:

What  a shame that the prior RE could not diagnose a bad tube! That seems like IF101. It is sad to see this as so many people just don't have the resources to go to CCRM and rely on other crappy REs who don't do their job. I hope this fixes it for you and you will get your baby soon.

I appreciate everything you said. Your reference to IF101 could not be more true. 

And, I can't help but think what if...what if we cycled again with our prior RE and got another BFN? It would undoubtably be the end of the road for us. 

Now, I have been given the gift of seeing this through with new information at hand. Thank goodness. There is still so much unknown and success is still far from guaranteed, but it is a foot in a new direction.

Feeling thankful today for our opportunity to meet with a great doctor who is giving us new hope. I hope we both get our baby soon. Hugs. 

BzeetyD

rockpaperlove:

BzeetyD:

So happy you were impressed.

CC.RM will look under every rock (haha!) and in every nook and cranny before they begin.

Hope you can get your tube situation fixed up ASAP.

Keep us posted!

Thanks B! How long did it take for all of your results to come in?  

I got a test back (AMH) and since then had to do a mammogram, a beta-3-integrin test (just had this) and will have CD3 blood drawn this week or weekend, depending on my cycle. 

Then I expect to talk to our doc shortly after that as they should have everything that was required for us. 

Hoping I'll be doing a retrieval in late March.

Will you have a lap for your tube?

Roxie5739

Great news on a great consult but I am flabbergasted with your prior RE and that HUGE miss. Hugs to you and all the luck in the world that CCRM has all your answers

rockpaperlove

BzeetyD:

rockpaperlove:

BzeetyD:

So happy you were impressed.

CC.RM will look under every rock (haha!) and in every nook and cranny before they begin.

Hope you can get your tube situation fixed up ASAP.

Keep us posted!

Thanks B! How long did it take for all of your results to come in?  

I got a test back (AMH) and since then had to do a mammogram, a beta-3-integrin test (just had this) and will have CD3 blood drawn this week or weekend, depending on my cycle. 

Then I expect to talk to our doc shortly after that as they should have everything that was required for us. 

Hoping I'll be doing a retrieval in late March.

Will you have a lap for your tube?

My integrin biopsy is next Monday - not looking forward to another speculum so soon after my ODWU, but it is the name of the game so - goooo team! 

I spoke to my nurse today and she is going to call me tomorrow morning with details on the lap. I spent a good amount of time today looking into having it done locally, but for various reasons - we feel most comfortable having CCRM do it.  Fingers crossed we can get that scheduled ASAP so a future cycle doesn't get delayed too much. 

I am rooting for you and your cycle just around the corner!! We are so fortunate to be with such an astounding clinic. May our dreams come true with their assistance!!

hootie123

One of my IRL friends just had a similar experience with a second opinion.  She only had one tube from an ectopic but found out the other was blocked.  She just had it removed.  Thankfully she only had done 1 IVF before figuring this out - but still it should never have happened. 

Good luck with your surgery and hopefully it is all you need - I have tons of faith in CC.RM - they will get you pregnant. 

Citygirl1015

I hope you don't mind me posting here, but I used to frequent the IF board for a while and have been taking a treatement break so it's been a while since I've been around.

WOW, thank you so much for sharing your story. Your initial HSG results sound incredibly similar to mine, and I'm wondering if my inconclusive results have anything to do with my repeated failed IVF's! My unexplained dx has always driven me crazy, especially when everything in my IVF cycles seem to go so well until they fail.

What is the process to correct this? Does it require removing your tube? I'm planning on starting my next cycle in March and would love to see if I can look into this before then. TIA for any insight you can provide!

rockpaperlove

Citygirl1015:

I hope you don't mind me posting here, but I used to frequent the IF board for a while and have been taking a treatement break so it's been a while since I've been around.

WOW, thank you so much for sharing your story. Your initial HSG results sound incredibly similar to mine, and I'm wondering if my inconclusive results have anything to do with my repeated failed IVF's! My unexplained dx has always driven me crazy, especially when everything in my IVF cycles seem to go so well until they fail.

What is the process to correct this? Does it require removing your tube? I'm planning on starting my next cycle in March and would love to see if I can look into this before then. TIA for any insight you can provide!

I don't mind you posting here. I am actually pleased you did because it makes me glad to know that my story might just make a possible difference for you or someone else silently listening.

I am so disgusted with the cycles I wasted time and energy and money on while not knowing this was going on inside my body. There is no way of knowing that had this been caught two years ago...I might be a Mother today, but the what if is enough to make me angry and upset - livid actually - with the clinic that overlooked it.

As far as how to go about resolving this new found issue: I have scheduled the laparascopic surgery for mid February with Schoolcraft in Colorado, which is bitter sweet because I could have my insurance cover the cost minus my $200 deductible after proving this is a health issue and not IF, but I don't want to waste another day on anymore setbacks or possibly something going array. It is an outpatient surgery and I have heard the recovery is not any worse than an ER. I don't know if they will have to remove the tube yet. They won't know the extent of this until they physically get in there. I have always suspected endo so it will be interesting to see what they find on that as well. Deep. Breath. Ugh.

Best of luck - hugs!