XP: Our WTF - long

BzeetyD · November 2012

Hey ladydudes -

We had almost a 2 hour conversation with our doc, which was great and very useful to us moving forward.

She said that my DX would be something like "light PCOS" crossed with "DOR." I've wondered about the PCOS thing before as I have a high AFC (usually over 20) and I'm a very good responder to meds - I don't have any other marked external symptoms and my TSH is normal. The DOR thing makes sense for the quality issue... but the DX is a tricky one because in many ways treating those two conditions are the opposite.

I had my blood drawn for an AMH, a Fragile X test and a Counsyl genetic test. - Will be getting the results in the next weeks. Our doc thinks that my AMH will be normal just due to how I've responded to meds and that AMH has a lot to do with AFC. Which is fine, I just wanted it done.

DH will have a Semen DNA frag test - just to check - especially if we need to move to DE.

-------

We talked at length about cycling at our current clinic and using the best cycle we've had (our 2nd) as a guide.

I'm 36, I'll be 37 in January. Our doc said that biologically I'm likely older than I am chronologically in the egg department so.. she said that at 40 we could expect that, on average, 10% of a woman's eggs would be normal. Clinical thinking is that we'd need to see 10 "transferable" embryos in order to see a normal one. We've only seen 6. So trying for a 4th cycle or 5th cycle isn't unreasonable. She said, depending on DX and age, most clinics go with 5 as the right amount of tries with OE, giving this 10% stat. It's a numbers game. If there's 100 goldfish in a bowl and 10 of them are gold and 10 of them are white... it's going to be difficult to dip in an randomly catch a gold one. And we all know that.

We talked about HGH - but our doc doesn't think it will help with our issues and that it's usually used for poor responders.

We talked about Neupogen and she said that's mostly used for lining issues, which I don't have.

We talked about EPP and MDL and neither of those would be a good fit, given what the DX is and how well the antagonist protocol seems to work for us (I've gotten PG both times).

We talked about Braver.man and RI. Doc feels that I am not a good candidate for this as my RPL came back normal and I have no allergies or other indications. She also felt that there isn't good evidence for some of the treatments being used. Which I agree with to a point, obvs things like MTHFR and clotting disorders can be treated easily, but I already know I don't have those.

We talked about getting more mature eggs. This is the trickiest part at our clinic, so our doc recommended that we consult at CCRM and consider cycling there as they have IVM (in vitro maturation) combined with IVF and are one of the very best clinics for this.

IVF with IVM could allow some of the immature eggs that are retrieved to possibly mature in culture before being ICSId.

This is of interest to us as my follicle sizes are usually very good (so, I'm saying that we're not looking to mature 12mm eggs, if this next cycle goes anything like our others, we'd be looking to further mature a bunch of 14's or 15's - which seems possible to me.)

I'm also interested in trying CCRM to see what happens in another lab/clinic.

I realize that we have hundreds of choices at this point and our doc is just 1 opinion. But she did her homework for us and presented us with something we hadn't thought about (IVF/IVM).

So we think that we'll consult with CCRM and talk with School.craft to see what he thinks and if we'd be good candidates for IVF with IVM.

I know that generally CCRM pushes genetic testing on embryos and Mister D and I will need to weigh that out. Luckily they have one of the best freeze/thaw rate in the country and their FET results are very very close to their fresh transfer results. It is expensive, but it could help us avoid another loss.

I also know that CCRM tends to push DE, but we're not ready for that just yet, and for DE, we'd do it at our home clinic anyways. Our doc believes that we'll have success with DE - but I don't really doubt that either.

CCRM is also more expensive than our current clinic.

So that's where we're at!

I might do some research around CCRM in the next week(s) or so and see what happens with our tests before scheduling the consult - or not! I'm very interested in hearing any CCRM experiences, good or bad and from anyone who has used IVM with IVF. (please PM me)

I'm feeling MUCH better having some kind of "plan" in place and feeling MUCH better after talking with her. Mister D is feeling better too.

My favorite aunt & uncle live in Denver so that would be helpful and nice. Also flights from MN to CO aren't too expensive and driving is also a possibility.

First step is to see how the consult goes.

We feel hopeful but we're proceeding without setting expectations.

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For others: There is a whole separate procedure called IVM that is very interesting and I haven't seen much posted on these boards about it. Basically for those with PCOS or high AFCs but egg quality issues, they barely/lightly stimulate the ovaries and then extract all the eggs before they reach maturity and let them grow/mature in culture for a few days before ICSIing them and then putting them back in like a normal transfer. It's significantly less costly than IVF because there are less meds and less ultrasounds and blooddraws/labs. It's very very new so not many people are doing this, and there isn't a lot of studies on success rates, but for the right candidate - it might be an option. There are a few clinics nationally who are doing it. Just a thought for those who are looking for options.

Thanks for reading. Here's a treat!

Juicy71 · November 2012

OMG those cookies look A-mazing!

So glad that you had a good conversation with your RE and are feeling good about your options going forward. I'm really rooting for you!!

asilwhite · November 2012

Bzeety - I'm SO glad you had a great WTF appointment with your RE. She definitely sounds like she's done her homework and is discussing the best options for you and your DH. I've never heard of IVF with IVM before, so thanks for enlightening me on that - learn something new every day!

It sounds like you have a good plan in place to move forward and I wish you the best of luck in your consult with CCRM and whatever plan you decide. Also, thanks for the cookies - yummm - cookies. Big (((hugs)))

baker916 · November 2012

I'm glad you have more of a plan moving forward. I am at CCRM with DOR, about to do my first IVF. I'm with Dr. Su.rrey, but as far as I know, all the Drs there follow the same protocols, recommend similar treatments, etc. It can be much more difficult to get in with School.craft, so you may consider one of the other four REs there. I can't tell you any experiences with IVM, but so far I really like everyone at CCRM. My RE, my IVF nurse, the staff are all wonderful. I also did all my testing and both IUIs at CCRM. No one has mentioned DE to me yet. If you have any more specific questions I can help with, feel free to PM me. Good luck!

BzeetyD · November 2012

baker916:
I'm glad you have more of a plan moving forward. I am at CCRM with DOR, about to do my first IVF. I'm with Dr. Su.rrey, but as far as I know, all the Drs there follow the same protocols, recommend similar treatments, etc. It can be much more difficult to get in with School.craft, so you may consider one of the other four REs there. I can't tell you any experiences with IVM, but so far I really like everyone at CCRM. My RE, my IVF nurse, the staff are all wonderful. I also did all my testing and both IUIs at CCRM. No one has mentioned DE to me yet. If you have any more specific questions I can help with, feel free to PM me. Good luck!

Thanks! I'm totally open to other docs there!!! I had just heard that consults are usually with School.craft.

I will likely PM you if I can think of any good questions.

destinyr61309 · November 2012

Those cookies have me absolutely drooling...

And I'm so happy that you have a plan in place! Your doc sounds absolutely fantastic and I like that you are now aware of a path/protocol that is so new (and sounds so fabulous!!).

I don't have any advice or anything, but I just wanted to send you some big ((HUGS))

rrdiva1 · November 2012

I would totally dip those cookies in some milk and eat them!

I find all of that post so informational and encouraging for those with same dx.

I am wishing you the absolute best in moving forward! Keep me posted

BzeetyD · November 2012

rrdiva1:
I would totally dip those cookies in some milk and eat them!

I find all of that post so informational and encouraging for those with same dx.

I am wishing you the absolute best in moving forward! Keep me posted

Thanks! That's why I posted, for people who are looking for thoughts or options or answers. Even for lurker loos... the more info the better.

PS. That photo is not mine, but I've made those cookies twice - a titch putt-sy, but they are KILLER amazeb@lls and totally worth it.

Recipe here.

MsGMChick · November 2012

What a great conversation! I think talking with CCRM is a good idea and new eyes will give new opinions.

I'm interested in what your AMH will be and your dr's thoughts on AMH correlating with AFC. I was just told my AMH is crap at 0.69. I'm only 27. But my AFC was 15.. so, not horrible. Anyway! Just wondering

Good luck B! I hope this is finally what gives you and Mr. B your take home baby!

cupcake201 · November 2012

It seems like you had a great appointment and came out with a lot to think about and consider. I hope that you and DH are able to make the best decision for you after taking some time to look into and think about the options. Hugs and good luck!

CutieGirlLissie · November 2012

I'm thinking I may have to bake some cookies today...

I'm so happy you had such a great and open conversation with your RE. It sounds like you have some real options and you have great information on them. I'll keep you in my T&Ps that you can choose a path that is best for you... GL!

Citygirl1015 · November 2012

That's so great Bzeety. It sounds like your RE is a true advocate for you, and knows his/her stuff. I loving hearing about new options out there, so thanks for sharing about IVM.

I will definitely be following your consult and possible journey with CCRM, as I would totally consider cycling there in the future. I had to do some monitoring appts there because I was in Denver for work before my fresh IVF, and they were amazing. They're incredibly thorough, efficient, knowledgeable, and super nice on top of all of that! I can see why they have such high success rates. If you decide to go there, hopefully you'll be one of their success stories!

Jezebell26 · November 2012

TICKER WARNING!!!!!!!!!!!!

I am so glad you had a great appointment Bzeety! This sounds like a lot to take in but also very very helpful. I am wondering if metformin will help you at all? Has this ever come up? I believe it is supposed to help with egg quality and with embies sticking if continued through 1st tri. I know a lot of women without insulin resistence or any insulin problems who have taken it. Maybe this is something worth looking into? I believe it had a lot to do with my success and I just have impaired glucose tolerance. I wish you the best of luck with CCRM and hope this is what you need to get you your take home baby. Always rooting for you and Mr. Bzeety!

Hugs friend!!!!

PS Now I need cookies!!!!!!!!!!! Yummo!

lisagab26 · November 2012

Wow, Bzeety. You've taken in a lot of info. It's great to see you have options and I am so happy that you and Mr. D are feeling hopeful.

That IVM info is great. Thanks for sharing.

As always, wish you nothing but the best

lincoln79 · November 2012

happy for your appointment and new avenues to explore. wishing the best for you!

DebateThis · November 2012

Yay cookies! And yay for an excellent consult. I hope all goes well for you in the coming weeks.

Lacyj67 · November 2012

That was very informative! I have a few similar issues as you I was first diagnosed with PCOS then he says DOR. I have recently lost a little trust and hope in my RE and in jan when I meet with him again I hope to be more prepared as you were with more questions and hopefully he will have more answers. It's so hard for me with this RE because the second I sit down with him I feel like a child asking stupid questions , my DH is not much help because he is very shy so I do all the questions and answering. all the IF stuff makes me so confused some times and I never get emotional in front of my RE but always lose it when I leave!!!! So props to you for doing your research and preparing for a big meeting like this! I always like to read your posts because it motivates me to be more pro active with my RE so thankyou B!!! Good luck with however you choose to move forward!!! Ill be watching for posts!!!: and P.S I'm on a diet and those cookies are torture! Lol

MrsGlitteryHooks · November 2012

Wow! You are such a good patient, you're fully engaged with your care, you take notes and you research! I'm glad you got some answers about what kind of plan to have in place.

Scoop77 · November 2012

OK, I am officially FREAKING OUT about those cookies. They have NUTELLA and SEA SALT in them and you've provided the recipe? You torturer.

Off to the important stuff: I love your plan. It makes total sense and I've heard of IVM but not much about it and it sounds fascinating. I also think the idea of switching up clinics just for the sake of providing a new environment (in addition to your great protocol changes) sounds like a good idea. I can't wait to see updates as things progress!

eandk18 · November 2012

Good luck with everything! It must feel good to have a new plan!!

JM1977 · November 2012

I think you are on a great track! Good for you for covering all your bases. CCRM is a great idea. We cycled there and unfortunately did not have success, but we ended up having super severe problems on both sides, so it kind of makes sense. I would definitely recommend cycling there - they really know their stuff. In my experience, they did not push DE. Since they are experts at working with women with egg quality/quantity problems, I think they will have some ideas for you beyond DE. I did my phone consult and my cycle with Dr. Minjarez and was very impressed with her. I wish you all the best moving forward!

brooklynesque · November 2012

Thanks so much for sharing all your info, and best of luck as you move forward. I was really interested to hear about the IVM and the fact that CCRM does it. I had vaguely heard of it before but wasn't sure it was being practiced in anything but an experimental context. As you can see from my siggy, I had real egg maturation issues in my first IVF -- I'll soon find out if that was a fluke or a bigger problem. It's good to know there might be something else to try.

Mayzie15 · November 2012

Oh my those cookies look so yummy!

I'm so glad you had an informative and helpful WTF appt. I've heard wonderful things about CCRM. Really hoping you get some answers that allow you to move forward in this journey.

chucktgirl · November 2012

First, those cookies DO look amazing!
Second, will you please come to my WTF appt with me tomorrow? (Of course I'm not serious, but I really wish I knew better what questions to be asking.)

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