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Wednesday, May 1, 2013

the second opinion

After 2 months of waiting, we just had our second opinion phone consultation with Dr. S at CCRM. What I didn't expect was to be more confused after the call than I was beforehand. I was hoping to get clarity and/or reassurance about the right drug protocol for my next IVF attempt. But that is not what happened.

Here are the questions I asked and the doc's responses.

1. Would you have tried the Long Lupron protocol with me from the start?
Probably not. Your FSH (he said 2 something) was low and Estrogen was high. That combined with your AMH being relatively low at 1.01 (he likes to see higher than 1.4) would predict your sensitivity to suppression drugs. 

2. What IVF protocol would you recommend for my next cycle? {My doctor is recommending an Antagonist protocol.)
He would want to run all of my tests again before making a determination - AMH, FSH, Estrogen, TSH and VHD. But he thinks that I need an aggressive protocol.

3. Would you recommend birth control pills as part of my protocol?
He would likely not use birth control pills for me.

4. Should I have the endometriosis removed for best implantation before IVF?
None of the studies suggest that surgery to remove endo increases IVF success unless you have a severe case - which I do not. So no, he wouldn't recommend surgery. 

But some recent studies have shown that endometriosis patients are missing a protein in the lining of their uterus. The missing protein called beta 3 integrin is the glue that helps the embryo attach to the lining in the uterus. Without it, IVF isn't likely to work. Dr. S would recommend doing a biopsy of my uterine lining 9-10 days after ovulation to see if the integrin is present. 

If I'm indeed missing the much-needed protein, he would do an IVF cycle to retrieve as many eggs as possible and then freeze them all. Two months prior to transfer, he would put me on a long acting form of Lupron which has this protein in it. He has assured me that his clinic has a 95% survival rate when thawing embryos so I'm not likely to lose any embryos by freezing them.

5. What tests would you recommend that have not already been performed to gain more insight into diagnosing our infertility?
As part of the clinic's policy, he would require that I get a baseline mammogram if I were to be treated at CCRM. He would also recommend a sperm DNA fragmentation test. Depending on the results, he could put A on supplements if he sees any problems.

6. Do my records indicate that I have diminished ovarian reserve (DOR)? 
It is possible. He would retest my AMH level. Since my AMH level was relatively low and my antral follicle count wasn't high (count was 10), he is concerned about DOR.
*Dr. Google says women with an AMH level <1.0 are considered to have diminished ovarian reserve. Mine is barely over that at a 1.01.

At the end of our call, Dr. S made the presumptive close and wanted us to set up an in-person appointment for testing and monitoring between cycle day 5 and 13. Cycle day 5 is only a few days away. A and I had always planned on staying with our local clinic and just getting this second opinion to make sure we are making the right decision on our next protocol.

But then A asked the question...how much better is the success rate at CCRM than our clinic?
Not much he assumed.
Wrong.
Here are the 2010 stats for my age range (35-37).
Our local clinic performed 83 fresh IVF cycles with 26.5% of cycles resulting in live births.
CCRM performed 109 fresh IVF cycles with 65.1% of cycles resulting in live births.
Yep! More than double.

A wanted to know why we didn't go to CCRM in the first place. I reminded him that when I mentioned CCRM in the past...he thought it was crazy to do IVF at a clinic in Denver when we live in California. Going to a more expensive clinic, adding travel expenses and additional time away from work...on top of already stressful situation was not something he was interested in doing. 

So where do we go from here? 
A and I are completely overwhelmed. He feels like we should've never had this consult because now we are questioning whether we are at the right clinic. Questioning our protocol. Considering additional tests which means more money and more time. He reminded me how much he wants this infertility phase of our lives to be over. He wants to move on. He's frustrated and angry that we are still going through this after almost 5 years.

After that, he left for work until Friday. 
I'm still sitting here. 
Confused and feeling really down. 
Will this ever get any easier?


53 comments:

Impatiently Waiting said...

We felt the same way after our second opinion confused and secon guessing ourselves.. I am sorry this is so difficult. I wish we had the right answers when we need them the most. I am thinking of you.

Aspgriswold said...

It is so hard to figure out what the best direction to take is. I am sorry that this left you feeling more confused about what to do with your next attempt. Will be sending you lots of thoughts and prayers as you guys figure out what direction to take!!

ousoonerchick said...

I can understand the money part but I have heard AMAZING AMAZING things about CCRM. Are you there any other clincs close to you that have better birth rates?

Gypsy Mama said...

You two have some tough decisions ahead of you! None of this is easy... I pray you can find the answers you are looking for soon and more than anything that your dreams come true soon! xo

Amanda said...

This is exactly how my second opinions went. I was hoping to be validated, but instead I was so confused. I know what I would do in your situation, but man oh man, the decision making process for this stuff is tough. And I know what it's like when you aren't on the same page with your husband. We battled over this stuff for more than a year… wouldn't want to go back to that time at all! Hoping you can get a sense of direction too and that your husband will find himself thinking/wanting the same things!

Suzanne said...

My goodness, I just want to reach out and hug you. I have had those exact feelings and still struggle with the CCRM vs. other clinic on a weekly basis. Sometimes it does just make things more stressful and more complicated. I hate that you're stuck feeling that way and didn't get more resolution from your call. Maybe a few days of stewing over the call, you and A can come back together over a glass of wine this weekend and discuss again. Go with your heart.

JenS said...

sorry your consult left you more confused. for reference, I have DOR and I was on an antagonist protocol with no BCP's. I think my AMH was a little lower than yours and my AFC definitely was. It's definitely a tough decision to decide to travel for treatment. CCRM would have been our next stop, but it was a slightly easier decision because my in-laws live in Denver so it reduces some of the expense. I hope you guys can come to a decision you are both happy with.

Aubrey said...

Oh friend, I was just where you are tonight almost a year ago. My phone consult with Dr. Sch left me so confused... And stressed. In fact, it took us about 7 months to finally decide to bite the bullet and schedule the ODWU. My advice is to follow your gut and your heart... Praying they will guide you to your next step. xoxo

Laura said...

I'm sorry that this made you more confused. CCRM is definitely more expensive, and it makes things more complicated coming from out of state, but they do have great stats, that was what drew us to them. In our IVF seminar there were 10 couples total-only 2 of us were from CO, 7 were from out of the state, and 1 was even from out of the country, that just blew my mind! Now is there any chance that your clinic test for the Beta 3 Integrin there, and do a more aggressive protocol? I'm on the plan that Dr. S recommended with the freeze-all and 2 months on Lupron Depot. I wish I could tell you that it works well, but I won't know until June... My Endo pain is dramatically less and that is definitely telling me it is working, but only time will tell if it helps with the transfer.

It is such a tough call, and sometimes it's hard getting a second opinion, but if nothing else maybe you can share this all with your current clinic and see if they are willing to try something else for round 2. I'm sure you guys will make a great decision. I'm sending prayers for strength and wisdom to you guys in this tough and confusing time!

XOXO

Team Harries said...

Goodness Jessah, sorry for more confusion added to everything!! I pray you are able to find peace and rest as you both continue to discuss and make decisions!

Ashley said...

Ugh I sorry you ended up with more questions! You guys will work through it and come up with the best decision for you guys! Take your time with this decision. I know just he much this struggle weighes you down!! Stay strong!

Deborah said...

Hugs...and lots of them.

Mrs. H said...

Praying for you and your decisions ahead.

Laura Rahel said...

Love you, sending prayers and thoughts your way for much needed clarity and hope.

The local clinic doesn't sound nearly as specialized/experianced. Maybe out of state is the right option for you guys.

Weighing the cost/benefit of trying again, at a place that has more knowledge and can provide you with more answers.

Trying without result may be devistating, and something you guys aren't ready to do now or maybe ever. It's not for everyone.

I pray that you guys find resolution and purpose. That any strains in your relationsnhip heal and your marriage made stronger and happier. I pray that you guys grow together after being torn from this journey.

Most of all, I pray that YOU find happiness, as your own person. That you do whatever is best for YOU. <3

kharini said...

The decision making about IF has been for me the most challenging part of all of it. It creates so much anxiety about what the next step should be. Take your time, and the answer will come to you. xo

Jennifer Hunt said...

Praying for you! Follow your heart! I got pregnant in
Jan after having an AMH of .69 in Dec & I'm 38, best of luck to you!

Sarah said...

Aww :( I wish I could be there to sit with you and keep you company. I'm sorry the consult caused more confusion. I guess the answer just might be to follow your heart. Maybe just going for it! Put everything in the doctor's hands and pray for the best. I know, it's sooo scary! Praying for some clarity for you guys xo

Rhonda said...

Can you bring up those concerns about what your second opinion said to your local clinic? Or can you find a local clinic that is more aggressive?

Whatever happens I wish you all the best. LOADS OF LOVE headed your way.

Anonymous said...

I definitely think its worth the time and money! Go with CCRM. Why waste your time with your local clinic. CCRM sounds like a much better place and obviously better success rates. You gotta do it!

Cristy said...

First off, you both got a lot of information from this consult. Even if this RE was in complete agreement with your current one, it still would have been a draining experience. So, give yourself a couple of days to process. Seriously, this is a lot!!

Secondly, you now have some things to think about. Yes, CCRM is famous as an institution and they deal with cases that most others are incapable if dealing with. That said, I don't think any of the IVF clinic report their stats in the same manner, leading to an inaccurate representation.

So, draw a bath, grab a glass of wine and spend some time taking care of yourself. Over the next couple of days as all of this stinks in, you and A will have time to discuss all of this and make some decisions (maybe even asking your current RE about some of the things you learned). For tonight, though, focus on the fact that you survived a stressful thing and deserve some rest.

Sending love.

Charity said...

IF totally sucks. I had my IVF consult and my FSH was relatively high for my age for the first time ever. There always seems to be some type of obstacle. I just wish we were both pregnant already.

Mrs Green Grass said...

I'm sorry this call didn't set your mind at ease! I have one piece of advice. Don't make the decision based on time (i.e. it has to happen this month or I will die!). I definitely felt that way, but it doesn't always lead to the best decisions. And afterwards (when you are pregnant! Fingers crossed) - a few months will be nothing. You want to be confident before your start your cycle. If you want to discuss with someone more, feel free to email me!

Sarah at Midwest Pillowtalk said...

it will be worth it when youre holding a baby. promise darling. you are so strong. keep hanging on. sending hugs love and good thoughts. xo

waiting and wishing said...

Well that is certainly a lot to take in! It sounds like he had some insight, and while I can completely understand how much bigger a cycle would be in Denver, I do honestly think if I were going to give IVF just one shot I would want to do it with a very successful clinic- just my tale on it. I'm sure you will make the best decision for you taking into consideration all of the possibilities- thinking of you!

Jay said...

It certainly sounds frustrating. It's hard to know what the right answer is and as with any big decision, there'll be 'what ifs' but you'll just have to trust your gut and go with it. Sending strength your way.

Renee Arianna said...

Aww Jessah! I can't imagine what you are going through. With such a higher success rate at the Denver clinic it sure makes you think what if... I know y'all will make the right decision! Prayers and hugs! Xoxo.

Jennifer said...

I am so sorry things are so difficult. I think it's worth it though. Hugs to you and hubby!

Sarah said...

Jessah, I felt the exact same way about my second opinion last month. I don't even think I ever blogged about it because I felt so... confused. I thought I'd have the EXACT same reaction as you- confirmation that we were on the right path and that I'd stay with my current clinic (the new clinic is not as far CCRM from you but it's a long haul....). Success rates are much better at the second opinion clinic. I've done some research on the beta 3 integrin- and there is not a lot of good research on it so I'm interested to hear if you do this and what kind of results you get. I'm intrigued by this test... but NEITHER clinic I've been to does it or believes in it. I've decided to give my current clinic ONE more chance before jumping ship. It took me over a month to process and decide what to do because I felt so confused. HUGE hugs. It doesn't get easier but certainly things keep moving and I think you have an excellent chance at getting pregnant at either clinic.
BTW, I loved reading your questions and answers for them because you and I have such similar histories! And we are the same age! My AFC was 10 for my first IVF and I'm terrified because I'm doing long lupron now....

JoJo said...

This journey never seems to get easier. Hope you guys can find the peace of mind and make the best decision for both of you.

AM said...

What incredibly difficult choices you two are faced with. Though seems like the clinic in Denver statistics speak for themselves. No matter how it may happen eventually I truly believe you will be blessed with children. Sending hugs and prayers your way!

Allison said...

Praying for guidance and peace as you make this difficult decision.

Katie said...

oh jessah i am so sorry. that sounds so confusing and stressful. I think going to that clinic seems like it gives you the best shot and it's important to think about those success rates. but only you two can decide what is best for you guys. it's so hard as if it doesn't work, you're not just mourning the loss of a failed cycle but all the other things like time of work, expenses and all that. i am so sorry and wish I could say something that could help. I will be praying for you and for the conversations you guys will be having.

Sadie said...

It's definitely a lot to take in. I'm sorry you didn't find the clarification you were hoping for. Nothing about this is easy, is it? Thinking of you, sending lots of good wishes your way and hoping that you'll find the way forward that works for you.

Catherine said...

This is a LOT of information! I would agree that CCRM would be well worth the cost and travel. I will pray that you find the answers you are looking for, my friend. Hugs((((())))))

Christine Williams said...

Jessah,

I've been reading your blog for a couple of months now. I apologize for not commenting sooner, because I've always been talking out loud to you when I read your blog. Here is what I want to say. Don't give up. Search your heart, pray, and you will know what to do. What you need to do. At the end of the day (later in life) will you have regretted not giving it your all? Will you wish you had gone out to CCRM for at least one cycle and tried for this baby?

I am currently in the middle of my first IVF cycle after 2 years of trying with unexplained infertility. I also live in MD where hospitals and dr's are abundant. So I know that you are further along in this with more geographical complications. I guess what I'm hoping you will do is reach back to the Jessah that started out (the one that wasn't exhausted and disheartened) and ask her what she would do. Because sometimes I loose sight of my dreams and all I need is for a fellow infertile lady to step up and and tell me not to loose hope, don't give up, and that talking to a place like CCRM happened for a reason.

I found this quote the other day and it spoke to me...but I think it's really for me to give to you. "You will come to know that what appears today to be a sacrifice will prove instead to be the greatest investment that you will ever make." - Gordon B Hinkley

I know everything is in Gods hands, but I have to know I did everything I could. Because family is the most important thing. You will know when you've given it your all and I hope that the peace from that or from having a baby finds you.

xo Christine

Katie @ Loverly She said...

It seems like it would be worth it to try the other clinic if their success rates are so high, but I would say it's more important that both of you need to feel at peace about it.

Praying that you'll have a clear sense of direction, Jessah. Keep pressing on!

Dream Chase said...

CCRM is def known for their success rates, but I understand you being torn and not sure which way to go. *hugs* Prayers and good thoughts for you.

Always Maylee said...

Sending you virtual hugs. I can't believe the success rate is so different! Maybe you should ask your clinic why they think that is.. are there factors contributing to it that is out of your control.. or are they just not as good?! If that is the case, I think it's worth trying one cycle at CCRM (if you guys are up for it). Sending you lots of positive thoughts!

xo, Yi-chia

Kristin said...

I am so sorry. I found the same thing when we were going through treatments. I even had one doctor change his mind half way through our treatments on how he thought we should proceed. I truly think they have no idea that our emotions are tied up in all of this. If you want to talk just shoot me an email.

JM said...

I feel your confusion... I have been there... I spoke with Dr. S and did not get straight answers neither. I truly felt it was not the place for us... Too far for a trip, added expenses and the uncertainty of a happy ending. Happy endings are not granted anywhere with Infertilty... Hope you guys get to a decision soon. In this journey having a plan feels a little better always. Hugs.

ksirahsirah said...

When I read your post this morning, I felt like I may have been reading my own words…especially the part of your hubby ready for the Infertility phase to be over…I can understand your confusion however- it sounds like you gained a lot of new valuable information, but that CCRM would do things differently than your local RE office. Which puts you in a predicament.. how to tell your local RE to follow a different protocol? Even down to the “no birth control pills” and the information about your AMH results.. No wonder you are even more confused than before, and you wanted clarity, not more decisions to make.

Also, those statistics are staggeringly different between clinics. almost overwhelmingly so… Making the decision to proceed with IVF is difficult enough, and after what you have been through even that much more difficult, and now this… take your time –let all this settle-pray- and maybe have another consult with your local RE. Tell them your new found information- light a fire under them-see what they will change and offer you.

Might be time for coffee talk soon.

Here for you.

xo

alesha said...

Oh honey. I am so sorry things are more confusing and that your husband is frustrated, I know that can't help your emotions. I'm thinking he might be feeling a little upset that he didn't go along with CCRM from the start.

Here's what I think, would you regret not going to CCRM? If you had to choose heads or tails and the decision was not CCRM would you be discouraged? I don't know if that helps, but it sometimes helps me when I'm faced with a decision.

It will be all worth it in the end. No matter the outcome you will know you gave it your all and you can be proud of that.

Love you lady.

Infertile625 said...

It sounds like CCRM is leaps and bounds over your clinic. But you have to be comfortable with the travel and agressive protocol. Give your self some time. Trust your gut. The gut never lies. Good luck to you. I look forward to continuing to follow your journey. Big hugs.

Hilary said...

Does your local clinic perform Natural Cycle IVF cycles? My clinics stats are pretty low compared to others in the area, but it's because they offer natural cycle IVF (no drugs) which do have a much worse rate. Unfortunately, SART doesn't differentiate. Just throwing it out there ;) Good luck with your decision!!

Samantha Bayer said...

Soul searching ..I have never had to make this difficult decision ..but I agree with comments above, will you regret not going? Praying for you!

Whitney B. said...

I think Christine ^^^ said it best. I am sorry y'all have even more questions than before. We are on doctor #3 and are waiting to hear "new plans" next Tuesday. But I am also only 27, since you are older, if it were me I would tell you what Christine said. That you will regret not giving it your ALL, if you feel you have and are at peace, then do what suits you, if not dig down deep. Praying for y'all and sending happy thoughts.

TracyZLesh @ Then I Got To Thinking said...

I can't imagine or relate to how frustrating that has to all be. I had to re-read a few of the answers he gave because it's all so "medical terminology" it's confusing and hard to understand - I know you know LOTS about it all, but it has still got to be so overwhelming. The success rate at that clinic is surprising, shocking that it could differ so much.

Been thinking of you - let me know if there is anything I can do to you to cheer you up.

Non Sequitur Chica said...

That is a difficult decision because I know that CCRM is more expensive than other clinics. Part of the reason they are more expensive is because they do run more tests than most clinics. I have a friend that will be doing IVF at CCRM this year. She basically said that she would rather have a baby through IVF than a bigger house down the line. Good luck with your decision- go with your gut!

The Giles Family said...

I am a new reader, found your blog through Peace it All Together. My heart goes out to you, this brought me to tears. I can tell you are a fighter, with a ton of strength. I wanted to share this quote with you. "When the world says give up, HOPE whispers try one.more.time.

I'll be holding you both in prayer!

Sarah Jafari said...

I'm sorry Jess, I wish I could win the lottery and give you all the money you need! I love you and will pray that God shows you His way in this situation. I'll pray for Aaron too!
Love you and miss you!

JillianCharlotte said...

Ugh I'm so sorry honey. Thinking about and praying for you that you figure this out and that whatever you choose will be successful. Xo

Em said...

Oh man, Jessah, my heart is hurting for you right now. I wish I could reach through the screen and give you a hug. I have been questioning whether to cancel my phone consult with CCRM for this very reason. I don't want to confuse myself even further. My hope for you is that what feels like confusion RIGHT NOW will turn out to be nothing more than informational overload. Perhaps it was just too much all at once, and you'll soon feel clarity and peace. Please God, let that be true!

Amber said...

Such a painful place to be. I remember those difficult conversations and decisions. I'm sure we will even still have them come up since we aren't done yet. I'm so sorry that phone call has left you even more confused about where to go from here. Hopefully you and A will be able to sit down for a heart to heart and get it all figured out for your next plan of action. Hugs and prayers being sent your way.

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