Nearly a Year Ago

My babies will be ONE tomorrow.  I can’t hardly believe it.  I never thought I’d be the type of woman who would say that the year just flew by or grieve the passing of such a special year, but I guess I am.  I take my babies for granted every day . . . and yet, every day they are a miracle to me.  I can hardly believe that after several years of heartache and pain, that I have two one year old girls and one five year old daughter.  I am blessed.

So why do I feel so crappy?  My mother in law is worried because I look pregnant.  No, I don’t think she’s rude for saying that . . . she said what I had been thinking, so I have to take it that much more seriously.  Why does my lower abdomen still hurt to be touched?  Why do I not EVER want to have sex?  And the constant spotting and cramping – I’m so tired of it.

Tonight I began researching the side effects of the Mirena IUD.  I tried to schedule an appointment with my OB/GYN, but he referred me to a GI person.  I’m going to cancel that appointment.  Perhaps I’m having GI trouble, but I really think it has something to do with the way Baby E was positioned, or the fact that my bladder was nicked during the cesarean, or a fibroid, or the reappearance of adenomyosis, or something.  I also suspect the Mirena.  It seems like there is an adjustment phase, an ok phase, and then a shit phase that continues to worsen.  I’m in the worsening shit phase, I’m sure.  So, I called and scheduled an appointment with my GP.  I’ll have her take it out and hopefully change my depression meds.  If that doesn’t work, Lord help me.

I have so much to be thankful for . . . why am I in so much mental and physical pain?

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

Caution: You may not need a myomectomy

I just talked with my regular OB.  He was under the impress that I had a Mullerian Anomaly (such as a septate uterus) and a major contributor to my recurrent pregnancy loss.  I’ve seen a Reproductive Endocrinologist recently who came up with his own recommendation.  He suggested that my 1-1/2 inch fibroid was distorting my uterine cavity and causing the recurrent pregnancy loss.  He said that he would be “very concerned” about that fibroid.

I double-checked my obstetric records from my 2004 pregnancy.  The fibroid was discovered during a 10-11 week ultrasound (a first-time mom, I was nervous that the midwife didn’t find my baby’s heartbeat).  The fibroid was roughly 4.5 cm then and is therefore about the same size now.  However, I don’t believe it to be a cause of my recurrent losses.  Rather, it is a symptom.  It is a symptom of imbalanced hormones, usually too much estrogen.

Anyway, my OB’s nurse called me today to say that he (my OB) would NOT recommend a myomectomy for a non-symptomatic small fibroid.  I don’t bleed without stopping; I don’t have unmanageable pain.  Since I already have a cesarean scar, he sees no reason to add to that.  Phew!

So, if anyone tells you that you definitely need a myomectomy, please do seek other opinions.  Your uterus may just say “thank you.”  In my case, it should be thankful that I’m saving it from at least two more uterine surgeries.