This post is about a sad trend I’ve noticed in the DE community and is only my most humble opinion.
In watching other people’s blogs for sometime now (and I apologize but I tend to go for the ones that are strictly DE), I’ve noticed an upsetting trend. It seems to me, that many REs think that DE is a panacea for just about everything. SG has this attitude and I find it disconcerting. I really think they think that if they just throw a bunch of donor eggs at you for 6 cycles, you’ll get pregnant.
Take my friend Rhonda. She’s had 3 perfect blast transfers and a BFN on all. Rhonda is one of those people whose husband should wear the sperminator shirt because all the eggs fertilize. She’s also had three different donors. (My thinking is that there are two BFNs with the same donor it is time for a new one). It was only after the 3rd transfer that they noticed she had a hydrosalpinx. Her first RE didn’t catch it and neither did SG initially. It was only after Rhonda went kicking and screaming to her RE that they re-examined her films and caught it and she’s had surgery to fix it. Now she’s having her frosties transferred. If this doesn’t work, they’ll move onto to DS.
But here’s the point. Why didn’t they take more care up front? Why not do genetic testing from the get go? Isn’t it better to be prepared? I am lucky that my military RE (a wonderful but busy man) was willing to let Uncle Sam pay for all the genetic testing I asked for. I didn’t even ask SG. I just presented them with all the completed blood work. I made them test me for MTHFR (I don’t have it) and Factor V (I do), CF (no), Tay Sachs (no). I could have them test MO2 for Spinal Muscular Atrophy but I doubt we have the capabilities but if we really pushed it, I’m sure they could send the testing out.
After my m/c, I went to the hematologist on my own. That’s how I found out I was o/ded on lovenox. I thought my RE missed the boat on that one (clearly). But the point is, I shouldn’t have to do those things, someone should care enough to suggest it.
I was really sad to read about Riley’s BFN for DE/DS and when I was looking at the suggestions people offered it seemed clear that some of that testing was never done. It is a shame that we have to be our own best health care advocates. It is a shame that there is no extensive testing up front. I am not a believer in the “throw DE at you and something will stick” I think the mental mindF%*(@ from repeated BFNs is too much for anyone to bear.
What I would tell DE recipients is to be demanding (even if you feel like a bitch). Read anything and everything you can on the DE process. Follow internet boards (even if just to lurk). The best ones that I know of are IVillage’s Donor Insemination/Donor Egg and Fertile Thoughts Donor Egg (links at right) After every failed cycle, meet with your RE in person. Suggest tests and push for them. Search out very aggressive protocols. EB’s Dr J transferred 5 blasts with good results (YAY EB) To do this, you have to be comfortable with reduction but in some cases, it might be beneficial.
If this cycle doesn’t work, I’m going to ask for a uterine biopsy, a re-do HSG and donor sperm. This cycle is a little different from my last in that I have more cramping (bilaterally but at different times for each side). I may have had it last time but I was on narcotics so I may have missed it. (although I do remember slight cramping). I also have a feeling of fullness/cramping intermittently (like when I did IVF with my own eggs right before retrieval) and those weird abdominal stitches I had the last time (if I stand up too fast or move rapidly I sometimes get a stabbing pain). There is also the vein in my chest that is more pronounced. All of these can be side effects of progesterone. The most bizarre symptom of this cycle (and sorry if this is TMI) is the strange odor to my urine. It only happens sometime but it has frightened me into thinking I have a UTI. I’ve only had 1 of those in my life. No burning/itching though.I probably shouldn’t micromanage those symptoms, I had nausea and breast swelling on my first IVF (with own eggs) and all I got was a stinkin’ BFN so I’m thinking already toward the next cycle.
We’re headed up North tomorrow for the holidays. Best wishes to all for a Merry Christmas and a Happy New Year!