Why its so important to trust your gut when dealing with infertility

[Anonymous]

Hi Ladies-
I want to post this here b/c so many times I have come to this board for answers and have valued everyone's opinions. My experience is not that of everyone but I think it's important to share.

Without explaining every small detail, I've had two MC's. One at 4.5 weeks and one at 8 weeks in the past year. After the first miscarriage I went to see and RE (Dr. Rifka at CFA) ASAP just because I knew something wasn't right. They ran my bloodwork and concluded that I had a hormone imbalance, granted this was three months after my first MC, so that makes sense. But they put me on injections with timed sex immediately in hopes of getting me pregnant...after two cycles, I'd had enough of sticking myself, so we tried to go it on our own. And of course, that's the cycle we go pregnant the second time. Fast forward 8 weeks and I was miscarrying again. This time I had a D&C and they examined the tissue and found it was a "normal" male. Rifka then tells me, that I HAVE to be on injections to have a successful pregnancy...so we go this route and add IUI to the process...still no success. Then they diagnose me with Diminished Ovarian Reserve based on my day 3 estrogen levels that were slightly elevated. He basically told me IVF was my only hope b/c I may not have enough good eggs left to have a successful pregnancy. Of course I'm devastated...at this point I seek a second opinion, Dr. DiMattina. Dr. D proceeds to run every blood test in the books on both me AND my husband(something Rifka didn't do). I had two types of ultrasounds etc..I actually didn't think I had any blood left that day.

Well, I got my results yesterday...it seems I'm fine...no diminished ovarian reserve, no hormone imbalance...okay, I'm slightly anemic. My husbands results showed a chromosome 9 inversion. In layman's terms a genetic disorder that comes with a higher than normal miscarriage rate. DiMattina explained that we can, with his blessing, keep trying on our own and have the chance of successful conception...of course the MC can happen again, but it can also not. It's new research so there aren't a lot of stats...I found that that this disorder comes with about a 30% chance of MC. Or we can go with IVF and PGD which would allow us to determine if the embryo’s are genetically sound before transferring them back.

Bottom line, I walked out of his office with the answers I’ve been trying to get for almost a year. Yes it sucks that there is no real fix for the problem, but at least I know what I’m dealing with. Rifka had me on four months worth of injections, two rounds of IUI and total fear that I was going through menopause at 31.

Sorry for how long this is, but the moral to the story is, if you feel like you’re not getting answers, or are not satisfied with your treatment, look elsewhere…starting over with blood work and ultrasounds is worth the peace of mind!

I hope this helps someone out there in our little community!

[Anonymous]

Thanks. Our "gut instincts" can be overwhelmed by "experts" and I totally agree that it's important to listen to yourself.

As difficult as the news must be, I'm glad for you that you got some answers and have a better sense about what possible options are.

Good luck.

[Anonymous]

OP, we had a similar experience with one of the docs at SG, but we went to DF for a second opinion and wow, what a difference. My husband and I are going to try on our own with the exception of early monitoring if I get pregnant. We have had 2 miscarriages and seem to get pregnant easily just need the right one to stick. Thanks for sharing.

[Anonymous]

Question, if you husband has an inversion and that is the cause of the repeat miscarriages, then why didn't anything show up on the karotyping of the fetus?

[Anonymous]

Did they do a sperm analysis on your husband? CFA?

[Anonymous]

OP here. They did do a sperm analysis and his count was great, slight decrease in motility but nothing to be concerned about.

Good question 16:33...DiMattina believes that b/c I MC so early they were only able to test only so much of the tissue and an abnormality didn't show up. From my understanding an inversion can be difficult to find without extensive testing. Given the missed findings of other bloodwork, my faith is not in CFA's ability to find it.


Poster 16:06 Seems like we're in the same boat. I agree Dominion has been a positive change for us...they will conduct our early monitoring too.

[Anonymous]

wow. OP, thanks for posting. More people should be aware of this. At 31, it would seem odd that you had diminished ovarian reserve. I was the same age as when I started with Rifka and he pushed me straight into IVF, told us there was no other option. My initial reaction was to get a second opinion but he came so highly recommended that I stayed and did what he told us like an idiot. When we failed to conceive after our second attempt, I also went with my gut and got the hell out of Rifka's office and went to a different clinic. Got pregnant on the first attempt. He is seriously way behind the times in terms of infertility research and techniques. I am sure he laughs all the way home in his $100,000 car (yes, not a typo, he drives a bentley to the office) of the money he makes off of duping people like us. Just knowing I wasted my money on that has been doctor infuriates me.

That being said, I've read on this board, that older women tend to have more success with him. Maybe that's his area of expertise.

[Anonymous]

Thanks for sharing...I am a DF 'grad' and I love to hear how their personalized care is helping people move forward in their desires to grow a family.

(((hugs))) for all you have been through!

[Anonymous]

OP here again...I'm not surprised Rifka drives a Bently! I think you are right in that he is most successful with an older patient or those that have "text book" fertility issues(if that's even possible.) But if you need in depth blood work or analysis, he simply is not up on the most recent medicine and stats.

I have read Dr. D is not for everyone...but I honetly appreciate his direct manner and it goes right along with my rapid fire of questions and personal research.

[Anonymous]

Thanks for posting, OP. I think you're in very good hands at Dominion. I had a great experience with Dr. D and Dr. G, and truly think the world of them both. Good luck to you!!

[Anonymous]

CFA does not do karotyping. I suspect none of the centers do their own karotyping. It is very specialized. If something was missed with the testing of the tissue from your D and C is was the labs fault that did the test, not the doctor ordering it. Not to diminish your treatment from Rifka with regards to pushing you a direction you did not want to go, but it really strikes me as odd that the translocation did not show up on the karotyping. Did you see the mapping? How many cells were they able to test? Given the up hill battle you will have given your husbands diagnosis, I would want to make sure there were not any other causes of the miscarriage.

[Anonymous]

20:19 how can you justify the treatment op got??? She disnt need it! After an 8w mc it is known not all chromosomal abnormalities can be found. Rifka should have known this and suggested kariotyping instead of ivf!

[Anonymous]

I am not justifying the treatment she got. I think she was right to seek another opinion. The original poster said she did not have faith is CFA's ability to find the inversion from the fetus. My point was that CFA did not do the karotyping of the fetus. That more than likely it was done by a lab that has a lot of experience in karotyping. Also, if you look at the report, it should tell you exactly how many cells they tests and if the results of all the cells matched. I find it odd that whatever lab did the karotyping missed the inversion if that was in fact the reason for the miscarriage, since they reported that it was a normal male. If there was not enough tissue to test, then they should have said as much. If it were me, I would be concern that there was still another issue going on. I would also go to a genetic counselor. But that is just me, someone who has gone through multiple miscarriages and extensive testing.

[Anonymous]

if the found the inversion is in your husband's chromosomes, then they would see it if it was there in the fetus. it is the same exact testing method. it has nothing to do with the amount of tissue. if the tissue wasn't viable, they would not get any results at all from the fetus. if the fetus had the inversion, it should be in every single cell. that being said, i was also told that i carried a chromosome 9 inversion but my genetic counselor said it was a very common inversion found in approximately 1 percent of the population and was totally benign and not at all related to my miscarriages. make sure your RE knows what he is talking about genetics wise and it may not be bad to get a second opinion from a geneticist or genetic counselor just to be sure you don't have the common benign inversion.

[Anonymous]

I have a masters in human genetics. It is the same test for both your husband and the fetus. It's called a karyotype. I can almost guarantee you they did not do any extra specific testing on your husband other than what they did on the fetus. The results are just a picture of the chromosomes all lined up. And there's only a few labs around that most places send to: quest, labcorp, genzyme, amerpath. Was it the same lab that did your husband and the pregnancy? Most IVF centers don't do the testing themselves, they send it out. Like the PP said, if that pregnancy had the inversion, it would show. You only need one cell to see if it is there. Inversions don't "hide." If it was normal, then it was normal. For your sake, please look into this genetic issue carefully before just assuming that it was the cause of your miscarriage. It sounds like it wasn't since the karyotype was normal. Do yourself a favor, and seek out a genetics professional to be on the safe side. Many OBs/REs/MFMs do not actually have much genetics training. Best of luck!