WTF appt today and new diagnosis..(long)

J&D2007

So, after 2 failed Ivfs I have been terrified of today's appt. I was almost positive she was going to tell us to give up. Thankfully, that wasn't the case, but she did call me DOR. First time I've heard this and I was a little shocked. We've been unexplained for so long that I am not sure how I feel about this. I don't really understand the diagnosis to be honest. My FSH has always been under 6, my hormone levels always fine, and my AFC is around 20. She is saying DOR because of presumed bad egg quality because of my poor response to stims I guess. Only 4 retrieved with an AFC of 20. Anyway, she is willing to continue with ivf a few more times because she thinks there are a still good eggs in there.

 I did tell her that I was thinking of getting a second opinion somewhere else (ccrm) & at another local clinic that has a shared risk program to try to decrease costs. She did say that she would come up with a program to decrease the cost going forward that would be just for us (sounds like an offer of $20k for 2 cycles, but she was pretty vague... Just said she would talk to the biller).  She also said to be very wary of ccrm's SART data, she seemed to indicate it was somehow manipulated. Still unsure if I should stay where I am at or consult ccrm.

 So, the plan if I stay with her is: 3 months of 75mg dhea, 600mg coQ10, and acupuncture twice a week for 3 months. She did say to change protocol to MD lupron with increased stims of bravelle and menopur. I then asked about antagonist protocol and she said that would work to, 'lets do that instead'..  Umm..o.k.  I really don't know what I'm talking about, I was just asking.... Anyway, I feel a little better about the fact that we can still try and that it may not cost as much, but the DE issue was definitely tossed about by DH and RE (I am still way far away from that concept for some reason). I am going to start researching antagonist (which she called 'antagon'..same thing?) and I am completely weirded out by the concept of acupuncture for some reason. I can't imagine finding the time to schedule hours of acupuncture a week  and having it improve anything at all, but I guess I have to try..  

Thanks for listening!  

Mrs.McIrish

While you are not the traditional DOR patient, getting 4 eggs out of an AFC of 20 sound like a poor responder. They seem to lump in DOr with poor responder. 

As for CCRM manipulating stats: they are big proponents of testing the embryos and doing an FET after. They are only transferring normal embryos so it makes their stats look so great.  Other places are transferring embryos blindly so the stats will be lower. Does that make sense??

I am a little concerned that your RE would just change the protocol willy milky based on your question. But I do think antagonist would be better-- less suppression. I did horribly on MD lupron. My e2 had trouble coming back on after.

As for acupuncture: I tried it for several months. It didn't really do much for me. Did the RE suggest it? I'd personally rather get a massage for stress relief but I know others love it. Like you, I found trying to schedule the appt and getting there during the week was counterproductive for my stress level! 

J&D2007

Mrs.McIrish:

While you are not the traditional DOR patient, getting 4 eggs out of an AFC of 20 sound like a poor responder. They seem to lump in DOr with poor responder. 

As for CCRM manipulating stats: they are big proponents of testing the embryos and doing an FET after. They are only transferring normal embryos  it makes their stats look so great.  Other places are transferring embryos blindly so the stats will be lower. Does that make sense??

I am a little concerned that your RE would just change the protocol willy milky based on your question. But I do think antagonist would be better-- less suppression. I did horribly on MD lupron. My e2 had trouble coming back on after.

As for acupuncture: I tried it for several months. It didn't really do much for me. Did the RE suggest it? I'd personally rather get a massage for stress relief but I know others love it. Like you, I found trying to schedule the appt and getting there during the week was counterproductive for my stress level! 

thanks for the reply. I was concerned about her changing her mind as well. I've been reading a little now on the antagonist protocol and people seem to get fewer eggs in comparison and that concerns me.  I am just not sure how to proceed here at all. i have a little while to think about it yet as i get started on the other recommendations.

The RE actually 'prescribed' acupuncture along with the supplements. I don't really 'get' acupuncture or believe in it, but who knows I guess.. She said it has good results for 'intense' people like me.  I guess I am a little intense when I'm there and going through all of this. In my normal life, i am pretty laid back and happy, but i guess i give off a different impression when i am doing ivf! I don't see how taking almost 2 hours out of my already crazy days to drive an hour and then sit still an hour while some jams needles into my face is going to help matters, as I'm already stressed about finding a good one, trying to call the office to see which days of the week I can get out early, etc... I tried massage and I just don't have the ability to relax like most people I guess. I just lay there thinking of everything else I could be doing and wondering if the lady cares if I'm staring at the ceiling rather than relaxing...

hootie123

Definitely go and get a second opinion at CCRM.  I did and even though we are not going there I don't regret it one bit.  You may also want to try another RE that is not quite as $$$$ as CCRM.    But I would definitely get another opinion for your case. 

GL!  

liz4paws

hootie123:

Definitely go and get a second opinion at CCRM.  I did and even though we are not going there I don't regret it one bit.  You may also want to try another RE that is not quite as $$$$ as CCRM.    But I would definitely get another opinion for your case. 

GL!  

I agree. I have heard a rumor that CCRM sometimes "cherry picks" their patients which can help their SART data, but I've never actually heard of someone being rejected there so who knows if that is true. If someone else knows more, by all means please chime in because I don't have any personal experience. I'd definitely give them a call.

Accupuncture caused me way more stress than it helped because of taking time off for appointments, forking out the extra $$$, having "homework" sometimes...I just didn't see the benefits. I'd rather get a sweedish massage.

I am sorry about the DOR diagnosis, but I am glad you are still trying to move forward. I hope you find the answers you need and get a plan together that you feel good about - at CCRM or elsewhere.

Mrs.McIrish

liz4paws:

hootie123:

Definitely go and get a second opinion at CCRM.  I did and even though we are not going there I don't regret it one bit.  You may also want to try another RE that is not quite as $$$$ as CCRM.    But I would definitely get another opinion for your case. 

GL!  

I agree. I have heard a rumor that CCRM sometimes "cherry picks" their patients which can help their SART data, but I've never actually heard of someone being rejected there so who knows if that is true. If someone else knows more, by all means please chime in because I don't have any personal experience. I'd definitely give them a call.

Accupuncture caused me way more stress than it helped because of taking time off for appointments, forking out the extra $$$, having "homework" sometimes...I just didn't see the benefits. I'd rather get a sweedish massage.

I am sorry about the DOR diagnosis, but I am glad you are still trying to move forward. I hope you find the answers you need and get a plan together that you feel good about - at CCRM or elsewhere.

Liz- CCRM definitely rejects people!! No way they would have cycled me with OEs. 

JM1977

I think there are a lot of red flags here.  It sounds like your low number of eggs could have been a protocol issue, which kind of makes sense given she doesn't seem as knowledgeable about the protocols as she should be.  Before moving forward with any other options, I would definitely do a phone consult at CCRM or at least check out another clinic.  I think there's likely a lot she is missing.

Sorry this is so stressful! 

PS CCRM cycled me with my OE, and we had every problem in the book (although I was only 31 at the time, so that may have helped my case).  I didn't get the sense that they reject a lot of people.  They do seem to be honest about your chances and not give you any false hope, but really they are doing much more advanced procedures than a lot of other clinics and their lab is great which I think explains a lot about their results. 

Gregermis

Definitely get a second opinion... it never hurst and her interaction with you does not inspire confidence.

rockpaperlove

I also suggest a second opinion. It was the best decision I made. Good luck!

BzeetyD

rockpaperlove:

I also suggest a second opinion. It was the best decision I made. Good luck!

Ditto.

My DX (barely given) was DOR with possible light PCOS, but CCRM has not used either of those words with me.

Also suggest wherever you look to get a SCSA (dna frag) test for your DH.

My home clinic simply offers 3 protocols, does not offer IMSI, PICSI or CCS testing and aren't willing to push things nor do they have much experience in MFI.

If your story is the same elsewhere, then you know you have a good doc on your hands, but if it isn't then, well you've turned over every piece of the puzzle.

J&D2007

liz4paws:

hootie123:

Definitely go and get a second opinion at CCRM.  I did and even though we are not going there I don't regret it one bit.  You may also want to try another RE that is not quite as $$$$ as CCRM.    But I would definitely get another opinion for your case. 

GL!  

I agree. I have heard a rumor that CCRM sometimes "cherry picks" their patients which can help their SART data, but I've never actually heard of someone being rejected there so who knows if that is true. If someone else knows more, by all means please chime in because I don't have any personal experience. I'd definitely give them a call.

Accupuncture caused me way more stress than it helped because of taking time off for appointments, forking out the extra $$$, having "homework" sometimes...I just didn't see the benefits. I'd rather get a sweedish massage.

I am sorry about the DOR diagnosis, but I am glad you are still trying to move forward. I hope you find the answers you need and get a plan together that you feel good about - at CCRM or elsewhere.

my RE basically said that their numbers don't add up as far as successes vs number of cases. She said they are missing 30% of their data. The rumor is that around 30% of the failed cases aren't SART reported because there is a loophole that they can classify those as 'research cases' which don't count toward your SART rate.. Since they are a research facility, they can manipulate that point. True or not, who knows..

J&D2007

liz4paws:

hootie123:

Definitely go and get a second opinion at CCRM.  I did and even though we are not going there I don't regret it one bit.  You may also want to try another RE that is not quite as $$$$ as CCRM.    But I would definitely get another opinion for your case. 

GL!  

I agree. I have heard a rumor that CCRM sometimes "cherry picks" their patients which can help their SART data, but I've never actually heard of someone being rejected there so who knows if that is true. If someone else knows more, by all means please chime in because I don't have any personal experience. I'd definitely give them a call.

Accupuncture caused me way more stress than it helped because of taking time off for appointments, forking out the extra $$$, having "homework" sometimes...I just didn't see the benefits. I'd rather get a sweedish massage.

I am sorry about the DOR diagnosis, but I am glad you are still trying to move forward. I hope you find the answers you need and get a plan together that you feel good about - at CCRM or elsewhere.

my RE basically said that their numbers don't add up as far as successes vs number of cases. She said they are missing 30% of their data. The rumor is that around 30% of the failed cases aren't SART reported because there is a loophole that they can classify those as 'research cases' which don't count toward your SART rate.. Since they are a research facility, they can manipulate that point. True or not, who knows..

I agree on the acupuncture, although I don't know if the benefit is just from relaxation and stress relief or if there is a more physical reason, e.g. Increased blood flow to uterus, hormone regulation, etc that I should give it a try.? 

Mrs.McIrish

JM1977:

I think there are a lot of red flags here.  It sounds like your low number of eggs could have been a protocol issue, which kind of makes sense given she doesn't seem as knowledgeable about the protocols as she should be.  Before moving forward with any other options, I would definitely do a phone consult at CCRM or at least check out another clinic.  I think there's likely a lot she is missing.

Sorry this is so stressful! 

PS CCRM cycled me with my OE, and we had every problem in the book (although I was only 31 at the time, so that may have helped my case).  I didn't get the sense that they reject a lot of people.  They do seem to be honest about your chances and not give you any false hope, but really they are doing much more advanced procedures than a lot of other clinics and their lab is great which I think explains a lot about their results. 

Yes, your age helped you. I was told by many others on another board not to even bother with my FSH level and I was 38 at the time.

BzeetyD

Just wanted to say that my comments about a 2nd opinion aren't solely related to CC.RM. Any 2nd opinion would be valuable, especially from another semi-well-known clinic. We were also considering opinions from ad.vanced fertility in Chicago, or S.IRM, but since we have favorite relatives in Denver, AND our doc suggested C.CRM to us, that made the most sense for us.

kflynn81

I hope CCRM and your other consult can give you some good advice. I tried accupuncture with my last cycle and it destressed me for sure but thats all it did. Hey, I consider it a win if I'm not ripping through the garbage to compare pee sticks, LOL

JM1977

Mrs.McIrish:

JM1977:

I think there are a lot of red flags here.  It sounds like your low number of eggs could have been a protocol issue, which kind of makes sense given she doesn't seem as knowledgeable about the protocols as she should be.  Before moving forward with any other options, I would definitely do a phone consult at CCRM or at least check out another clinic.  I think there's likely a lot she is missing.

Sorry this is so stressful! 

PS CCRM cycled me with my OE, and we had every problem in the book (although I was only 31 at the time, so that may have helped my case).  I didn't get the sense that they reject a lot of people.  They do seem to be honest about your chances and not give you any false hope, but really they are doing much more advanced procedures than a lot of other clinics and their lab is great which I think explains a lot about their results. 

Yes, your age helped you. I was told by many others on another board not to even bother with my FSH level and I was 38 at the time.

Yeah, that makes sense.  I know at the time I was cycling, there were a lot of late 30's/early 40's women also cycling (who I met through another board as well), but they probably had better AFC's/FSH than most.

DoublePortion

I agree with the others about getting a 2nd opinion. As for acupuncture, I love it but can see why it's not everyone's cup of tea. Like other have suggested about massages...if you find them more relaxing then do that instead. I've read a few articles about how reflexology massage is supposed to help IF so I gave it a try 2 weeks ago and loved it. I found a place where that is all they do and they are open till like 10 at night. It was $40 for an hour and less for 30 min. It was a nice place but not a fancy spa where you pay tons more for the ambiance. Plus, the Asain grandma who helped out the masseurs held my hands and then cupped my face while speaking to me in whatever language it was. I wanna go back just to see her! Anyway, this has gotten ramble-y, but my point is maybe you can find a place that won't cost a ton close to you. ((hugs))

J&D2007

So I am taking your advice. I called my RE this morning and getting the process of records release started. I think I'm getting them released to me so I can copy and mail or bring them to whomever we decide. I feel bad about it. Like I'm breaking up with a good friend. I feel a little depressed because I feel like I'm starting all over at the beginning again. I also made an acupuncture appt. I hope I'm pleasantly surprised and like it, as I'm already pissed that I have to leave 2 hours early for work on the only day that I get to sleep in in order to fit these new appts in...

rockpaperlove

J&D2007:

So I am taking your advice. I called my RE this morning and getting the process of records release started. I think I'm getting them released to me so I can copy and mail or bring them to whomever we decide. I feel bad about it. Like I'm breaking up with a good friend. I feel a little depressed because I feel like I'm starting all over at the beginning again. I also made an acupuncture appt. I hope I'm pleasantly surprised and like it, as I'm already pissed that I have to leave 2 hours early for work on the only day that I get to sleep in in order to fit these new appts in...

I truly believe you will thank yourself later.  Yes, it is time consuming to get a fresh set of eyes on your case, but I think there are a lot of red flags with your current RE.  Good luck and hugs.

joules12

I've come to learn that second opinions are often a great thing -- especially in the world of REs!  I dragged my feet about it for quite some time, but was very glad once I started the process. Wishing you all the best with this next step!