Today is the day to start my second pack of 'active' BCP's. I had to call the nurse because the pharmacy said it was too soon to refill the Rx. She got that worked out but I asked her if she had my EFT (endo biopsy) results back yet. After fumbling around she found them and started to read things to me... she might as well have been speaking a foreign language. She said the bottom line was something showed slightly abnormal and it might be the endometriosis that the CA125 test had indicated was a possibility.
So the doctor wants me to have another CA125 test after this second round of BCP's and then go into yet a THIRD cycle of BCP's leading into my next IVF cycle. I was crushed. A third cycle of BCP's, that's 63 days... which would put me into late July before I could possibly start stimming for IVF3.0? For treating POSSIBLE endometriosis?? This puts me at 5 months in-between IVF's... what happened to No Cycle Shall Be Without A Purpose?
So do I have endo or don't I?? I have no idea.
I asked if I could talk to Dr. T about the test results and the possible diagnosis, even if by phone. I was informed that Dr. T doesn't "do" phone consults but I could make an appointment. Of course, I know that means at LEAST 4 weeks before I can talk to her, I'll be in my 3rd cycle of BCP's by then.
I was blinking back tears at the pharmacy this afternoon picking up the BCP's I need because I can't get pregnant... it sucks and it doesn't make sense.
Second Opinion
I had my phone consult with Dr. Su.rr.y at CCRM last week while at the beach. He does suspect that with my 2 chemical pregnancies (he agreed that's what they were) it's likely an embryo quality issue. He recommends PGS (Preimplantation Genetic Screening) with my next IVF cycle to get a better idea of my embryo quality. He also talked about how different labs impact the quality of the embryo.
He also doesn't believe in using the CA125 test to diagnose endometriosis (it is a test commonly used for cervical cancer) and it could mean MANY things, especially given it was barely above the normal threshhold. Apparently the use of the CA125 test as an indicator for endo started at Wake Forest so he suspected it was picked up by my clinic due to the local connection. He doesn't believe in using BCP's for endometriosis control, he would use Lupron priming. He doesn't believe in the EFT (endo biopsy) as it's not validated outside of the Yale research facility.
If I work with CCRM, I would need to travel to Colorado 3 times... 1) Initial evaluation/workup; 2) Egg Retrieval; 3) FET (after PGS results)
There was a lot more to the consult but I'm trying to keep this post condensed.
Do I stop taking the BCP and go to CCRM for my next cycle or don't I? I have a pro/con list in my head.
Pros
- New lab
- New doctor
- More info on the embryos
- Moving forward within next 2 weeks
- Local monitoring (via my current clinic, is that a pro or con?
- New doctor not as familiar with my history
- I'm 1/3 through the BCP protocol (should I need to start it again one day, I'll have to start over)
- Travel/time away from work
- What happens if my CCRM IVF doesn't work?
In the meantime, I'm at a loss for whether I can schedule a trip with 2 of my oldest girlfriends to celebrate our 40th birthday's... we were thinking late July. If I stay with Dr. T, I'll be stimming in late July. If I go to CCRM, I'm not sure (depends on when I stop the BCP's) but my ER could be mid-July so we might be able to do our trip (depending on how I swing things with work).
Decisions... I wish someone could just tell me what to do for a change, because I have NO IDEA.
Of course no one can tell you what to do, but I do know that a lot of people have had success with CCRM when they had no success elsewhere. Yes, it's far and expensive and all the other cons you mentioned, but from what I've read and heard anecdotally they also seem to be the best place to work with fertility issues.
ReplyDeleteI think a lot of it comes down with what you think you can handle. If you're in for the long haul, you might be fine with seeing how your current protocol works out. If you are just really needing to jump straight to the big guns, then CCRM might be your best bet.
I wish you the best no matter what you decide to do!
Hi! This is my first time on your blog but I wanted to chime in (hope that's okay!)
ReplyDeleteI also had a consult with CCRM. They're really supposed to be the best in the country so that's a huge plus. The only thing is I've heard that they will reject people whose FSH is too high for them. They don't advertise that but I've heard of people spending a fortune on the initial tests and consult and then being turned away. I don't know if this is a concern for you (It was for me because my FSH is my main issue and is definitely elevated) but I just thought I'd mention this to you. In all other respects, I think CCRM is a great idea.
I've heard of CCRM and that they are pretty good. For what it's worth (and maybe not much) I read about CA125 when I was first going through Endometriosis stuff. I read that it wasn't reliable and so I didn't go through with it. I agree with Dr Surry on BCPs. In my experience and opinion which probably differs from others, I didn't have a good experience with them as far as Endo management goes.
ReplyDeleteYou've got a lot to think about but CCRM sounds great.
I'd vote for CCRM too if you can afford it financially. They just have such a good reputation and seem more confident. And I say that too because the energy I hear from you about really wanting to move forward now. But only you know all the details that go into it. Good luck, sending positive thoughts.
ReplyDeleteIf you would have to travel anyway, I highly recommend SHER (www.haveababy.com) I truly believe if it weren't for Dr. Ahlering, I wouldn't have gotten pregnant.
ReplyDeleteIt really sucks that we have to make so many decisiona which other people never even think about. Wouldn't it be nice is even the decision making was easy for once? BB, I have no advice just words of concern and well wishes.
ReplyDeleteOy. Yes, a conunundrum. My RE also doesn't use the EFT test but prescribes lupron if issues are suspected or endo is proven.
ReplyDeleteIt seems to me you have a third option here, which is taking what you found out from CCRM back to your local clinic and asking to go ahead with your cycle as planned. Or getting another local consult.
What going to CCRM might help you figure out is the extent to which embryo quality is a result of lab/stim issues and to which extent is just age/biology. Would CCRM use a different stim protocol, or just add PGD to the mix? (Does your local clinic to PGD?) What kind of success rate did CCRM quote you, given your age/previous cycles/etc? A definitive diagnosis of "egg/embryo quality" problems might matter to you. It didn't to me (at least not as much as time mattered), which is why I went to donor egg instead of doing IVF at another clinic. I know you're not there yet, but you might think about what you need to do emotionally, rather than practically.
They have non stop flights to Denver - Why not give the new Doc and clinic a chance? They could only do better. Then you would also have the satisfaction of knowing you had tried the best in the world.
ReplyDeleteI travel for my IVFs. It's not too bad but it can be expensive considering my clinic makes you bring a companion for retrieval day. Also, where would the cycle monitoring happen if you were out of town. I'm lucky enough to be able to get it done at home, although that costs more money too.
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