Monday, May 18, 2015

All in my head

So I'm pretty sure I ovulated yesterday.  Here goes nothing, right?

On my drive to the office today, I did what I often do, I recited my backstory to myself?  Am I the only one who does this?  I do so, because when I do actually see new doctors, it makes life much much easier to have total recall - dates and all - of a complicated history to recite. 

At 34 I had an uneventful pregnancy that resulted in my one living child.  I went off of birth control at age 37 and waited three cycles.  In April 2012, I had just turned 38 and was pregnant, only to learn it was a partial molar pregnancy.  I had a D&C at 12 weeks, and then was told I was struck by lightening, and needed to be screened for gestational trophoblastic disease for 6 months.  During that recovery time, my period never returned and it took four months for me to convince anyone that perhaps I had Asherman's Syndrome, I was told I was stressed out with the prior events and if I relaxed my period would return.  Only after I demanded an HSG where the catheter couldn't go in because my cervix was sealed shut did anyone believe me.  In December 2012 I had the scarring removed by in-office hysteroscopy by a specialist in Boston and was told to resume trying.  The following April I was pregnant again, but lost the baby in June and had my second D&C.  It was a rare trisomy - T14 - and we were karyotyped for suspicion of carrying a balanced translocation, but it was a de novo event and we were told to try again.  I then went to a new RE and I had another hysteroscopy in November 2013, after not getting pregnant and it was discovered my scar tissue was starting to reform.  My then RE who tested my hormones, which were normal, and eventually did a few clomid cycles.  On a clomid/IUI cycle I was pregnant again in April 2014, but this was a blighted ovum.  I miscarried that one naturally.At that point I was told to attempt IVF with PGS.  I went to a clinic where this could be done but they rejected me as a patient because my FSH jacked up to 18.5.  I was told I would never get pregnant or carry a healthy baby with my own eggs and that I was entering menopause.  I did demand to be tested for MTHFR, and was almost denied because the REs believed that it has no bearing on recurrent loss.  But the test came back with a result that I was homozygous with the 677 mutation.  That was in June 2014.  One month later I was pregnant again.  This time I had morning sickness and all the sensations of a normal pregnancy.  I self-prescribed baby aspirin because of the MTHFR, and took vitamins with mthyl-folate instead of folic acid.  A panorama screen at 10 weeks indicated I was carrying a healthy baby girl.  And then at our 12 week NT scan we discovered she had a giant omphalocele containing all of her internal organs.  It was the size of her torso and doctors were very cautious and grim about her prognosis because her heart and lungs would absolutely be impacted.  We researched long and hard and after much struggle, terminated the pregnancy to spare her - and ourselves - suffering.  We were told that the MTHFR had nothing to do with her defect, even though I found NIH published papers describing a corrolation between her diagnosis which is similar to a neural tube defect and MTHFR.  I had a D&C in October 2014, and waited three cycles.  I was pregnant again in February 2015, but that pregnancy resulted in blighted ovum as well.  I had my fourth D&C.  I have had four D&Cs, one hysteroscopy in the OR and two hysteroscopies in-office.  To this day despite my age and history, I am told I am not a high risk patient for cervical incompetence, despite all of these surgeries, and that I don't need lovenox.

We are looking for time on the calendar to take a drive to see a Maternal Fetal Medicine doctor with experience with RPL patients who is roughly an hour away from us, for another opinion.  About my risk-status, about MTHFR, about cervical incompetence, about everything.  Is it more than likely I will never be pregnant with a healthy baby?  Sadly yes.  But do I need to prepare for the possibility that I could be pregnant again and line my ducks in a row? Fuck yes. 

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