RPL Update Number I Lose Count

I started writing up a big post about the more recent developments in my journey through recurrent pregnancy loss.  I still need to finish it up, but in the meantime, he’s a quick update:

  1. In August I had a hysteroscopic myomectomy done in Denver.  The idea was to hopefully remove a fibroid that was bulging into my uterus.  Instead of a fibroid, the surgeon found an adenomyoma located directly above my cesarean scar.  I have to review my records from my 1 successful pregnancy to determine whether or not the fibroid that was present during that pregnancy changed into this adenomyoma.  Otherwise, it is likely a lovely by-product of the 2004 cesarean section that was performed on me and my daughter.
  2. I have a substantial progesterone deficiency.  Progesterone levels should not drop below 8-10 in 2nd luteal phase draw, and mine dropped to 3.  I will have to have HCG shots during the luteal phase and progesterone shots during the first trimester to support the corpus luteum and developing baby.  It makes me INSANE that the last OB I asked to test my progesterone outright refused.  I lost that baby, obviously.
  3. I have to wait until November to have an ultrasound performed to let me know if my uterus and endometrium have repaired from the surgery.  Then we can talk about ttc.

That’s my nutshell.

Recurrent Pregnancy Loss Update

It’s hard to believe that it’s nearly a year since my first loss and only 4-1/2 months since my last loss.  But I am starting to put the pieces together.  Here’s the list of causes my Reproductive Endocrinologist outlined for me at my early June visit as well as my status in each of these areas.  I hope this may help others who have experienced multiple losses advocate for the help they need.

INFECTION
Yeah, it really stinks to think that I could have lost babies due to low-grade infection, but it is possible.  The RE recommends that I do a round of antibiotics during early pregnancy.

IMMUNOLOGICAL PROBLEMS
This category refers to things like clotting disorders, immuno-deficiency illnesses, and the like that can and do contribute to primary and secondary infertility.  When clear immunological problems are not identified through extensive blood testing, doctors seem to recommend taking a baby aspirin (81 mg) a day as a possible protective measure.  My bloodwork came back just fine and dandy!

STRUCTURAL PROBLEMS
Structural problems can be congenital or acquired.  An example of a congenital structural problem is a bicornuate uterus.  Some women with this uterine shape have difficulty maintaining pregnancy to term and their babies may not descend optimally (vertex, anterior-ish) into the birth canal.  I had a HSG done in late April, and my OB believed that I had a congenital uterine defect.  However, my follow-up (and second opinion) with the RE has not confirmed this to be the case.  Rather, it appears that a relatively small (1-1/2 inch or so in diameter) fibroid is distorting the left side of my uterus.  Even though it is intramural (in the muscle, not in the uterine cavity), the RE thinks it is enough of a problem to justify a laparoscopic myomectomyI am not convinced and will hold off on this invasive procedure until all other avenues have been exhausted.

HORMONES
This is where we enter a major realm of disagreement in the medical world.  Some doctors believe in progesterone deficiency and luteal phase defect; others don’t.  Some of the doctors who don’t will still agree to supplement since conventional wisdom suggests that supplementing progesterone production isn’t dangerous.  As luck would have it and non-traditional practitioners have told me time and time again, I have a progesterone deficiency.  A fairly marked deficiency, actually.  I had my progesterone levels checked twice during my last cycle – the first level was 20 (good); the second level taken only 48 hours later was 3 (NOT good).

LUCK OF THE DRAW
The fact remains that not all pregnancies are viable.  All children are a blessing, but not all babies – in utero – are meant for this world.  I do take some comfort in knowing that if any of these babies were just not going to be healthy, that they were not put on this earth.  I’ve had friends and family members choose to terminate pregnancies in the 2nd trimester, and I am thankful that I have never been given that choice.  On the other hand, knowing that my body is not producing enough progesterone to sustain pregnancy makes me sad and incredibly angry.

I am sure that the sadness is quite apparent if you’ve read anything on my blog this past year.  The sadness and loss has been overwhelming at times.  I am quite certain that my baby boy has been trying so hard this past year to come home to me, so it’s been particularly trying and emotional.

Why am I angry?  First, it is extremely frustrating to have seen three practitioners who have disparate diagnoses and protocols for dealing with repeat pregnancy loss.  Secondly, being refused services is infuriating.  Thirdly, doctors who contradict themselves and/or make stuff up make me insane.

OB 1 doesn’t (WON’T) test hormone levels during early pregnancy.  I am angry because she refused to order a simple progesterone test, and now that I know I have trouble maintaining adequate progesterone levels during the luteal phase, I resent her even more than I did before.  She has contradicted herself; she has refused services; she told me I would have to schedule a repeat cesarean for future births moments after waking up from sedation following an unwanted (but needed) D&C; she didn’t ever give good justifications for her protocols; she wanted to put me on Clomid; etc.  Mostly I am angry with HER.

OB 2 doesn’t believe in luteal phase defect but is willing to treat with progesterone supplementation.  My beef with this doctor is that he made up a term on my HSG report – partially-didelphic uterus.  It doesn’t exist.  OB 2 is great in that he’s willing to collaborate with specialists and takes the time to explain the evidence underlying various protocols.  I also appreciate that he is cautious when it comes to reproductive surgery.  He told me that I shouldn’t consider a myomectomy at this time – isn’t one uterine scar enough?

RE 1 I appreciate because he has been very thorough.  Perhaps there has been some overkill, but at this point, more information is good.  I am glad that we can (for the most part) rule out acquired or inherited thrombophilia, for instance.  I wish he hadn’t been so quick to suggest surgery for my fibroid.  I wish he hadn’t invalidated my concern for what this myomectomy would mean for my reproductive future.  Sure it may improve my fertility (possibly), but it would certainly necessitate cesarean deliveries from here on out.  I got the feeling that since my uterus is already scarred, that he assumed additional scars were negligible concerns.  He wasn’t listening.  Additionally, my last conversation with the RE’s nurse was confusing – I almost wonder if he has me confused with another patient?  Or perhaps he consulted with other doctors in his group regarding my file and has revised his protocol.  It would be nice to know for certain.

I will likely seek another opinion from a RE since I am in a big city this summer.  Recommendations for surgery really need to be followed up on with additional unrelated practitioners.  You’d get a second opinion if a doctor recommended back surgery, right?

Next up – a sonohysterogram in about a week.

RESOURCES

http://www.rialab.com/miscarriages_prevented.php

http://repro-med.net/info/cat.php

http://www.instituteofalternativemedicine.com/bioidhormone.htm

http://www.ivf.com/recurrent.html

http://www.cushings-help.com/infertility.htm [luteal phase defect section]

http://infertilityblog.blogspot.com/2007/01/so-your-uterus-is-bicornuate-check.html

http://stirrup-queens.blogspot.com/2008/01/two-part-sonohystogram.html

http://www.coe.ucsf.edu/fibroids/bg_diagnosis.html

Anomaly

Anomoly.  Congenital.  Rare – in my case occurring in 0.1-0.5% of women or possibly as high as 10% in women with recurrent pregnancy loss[1].

On Monday I had a hysterosalpinogram (HSG) done to check the lining of my uterus for abnormalities potentially caused by a cesarean section in 2004.  My doctors and I are not finding good reasons for repeat pregnancy loss.  My lupus anticoagulant panel came back clean, and the only test left to do in my current OB’s mind is an ANA.

As a result of the HSG, I was diagnosed with uterus didelphys, one of several Mullerian Anomalies.  The OB is certain that this is the cause of my recurrent losses though still recommends the ANA blood draw.  He doesn’t think I need to proceed with a thrombophilia panel.  He didn’t offer any course of action for this issue, suggesting that we should just “keep trying.”  He was surprised that this hadn’t been diagnosed sooner.

Of course, being the curious person that I am, I performed internet searches for “double uterus,” “didelphic uterus,” and “uterus didelphys.”  I also chatted with an internet friend who put me in touch with a couple of other people who have been diagnosed with anomalies.  I have joined a yahoo group that deals specifically with these anomalies.  Even a couple of hours after the procedure, having looked at many pictures on the internet, I began to have doubts about my diagnosis.

I will obtain a copy of my HSG “picture” hopefully today from the radiology lab.  When I compare what I remember seeing on the screen at the hospital with what I see on the internet, I think it’s more likely that my uterus is bicornuate (heart shaped) and/or possibly contains an uterine septum.  A septum would be most problematic for maintaining a pregnancy because if the baby implants on the septum, it will not have enough vascular support to grow.  (This just breaks my heart.)

What next?  I am going to be in Denver for a couple of months studying vocology (vocal science).  (I need a calculator and to remember my college physics class from 1990, eek.) I am looking for a reproductive specialist there who will do a thorough investigation of immunological, endocrine, and structural causes for my losses.  It is possible that the immunological path has been exhausted, but with my mother’s history of autoimmune disease, I’m not so sure.  Endocrine/hormone issues haven’t been addressed to my satisfaction.  Neither OB group I have worked with in town believe in progesterone deficiency.

So, that’s my story in a nutshell for now.

[1] Müllerian duct anomalies are estimated to occur in 0.1-0.5% of women. The true prevalence is unknown because the anomalies usually are discovered in patients presenting with infertility. Some women carry babies to term with anomalies, so it could be more common, possibly as high as 3% of all women.  Sources: http://www.emedicine.com/Radio/topic738.htm; http://www.seattlefertility.com/treatmentOps_UterineAnomalies.htm