Recurrent Pregnancy Loss Update

July 8, 2008 at 6:22 pm (Mullerian anomaly, awareness, healing, miscarriage, recurrent pregnancy loss, testing)
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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 myomectomy.  I 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

8 Comments

It’s in the search

July 1, 2008 at 6:28 pm (awareness, grief, miscarriage, recurrent pregnancy loss)
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Telling . . . one of the top searches that brings people to my blog these days is “myomectomy aftermath.”

4 Comments

Getting Weary from the Drawing Board

June 26, 2008 at 8:30 pm (Mullerian anomaly, awareness, grief, healing, miscarriage, recurrent pregnancy loss)
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I’m supposed to have some more blood testing done later this cycle.  On CD3 I had FSH and estradiol levels checked.  Fortunately they came back just dandy - lo and behold my 35-1/2 year old advanced maternal age eggs are doing just fine.  Of course this does bust my hypothesis that my fibroid is caused by imbalanced estrogen levels.  Actually, one of the nurses said that the estrogen-fibroid connection is only relevant in post-menopausal women.  I haven’t done follow-up research to decide if I agree.

Anyway, the RE told me to buy an ovulation prediction kit (OPK) to determine when I would ovulate this cycle.  He didn’t trust me when I said that I *know* when I ovulate.  So, I spent the $24.00 on the cheapest OPKs I could find.  (By the way, Dollar Tree does not uniformly carry OPKs any more.  Drat!)  Let me just say that OPKs are the most stupidly designed hormone tests EVER.  When you test you will likely get 2 lines, but that doesn’t mean that the appropriate hormone (LH, I believe) has been detected.  Oh no.  You need 2 lines of equal strength or your line should be stronger than the test/constant line.  So, is it an equal line?  What if both lines are equally weak?  What if I *think* I’m seeing a strong and equal line but it’s not really accurate.  At the end of the day, I just ended up taking the stupid test so I could say I did it and then rely on my body’s very reliable signs to tell me that yes indeedy I did ovulate when I thought I did.

How am I so sure that I ovulated?  Well, without divulging too many gory details, here are some good ways to know: cervical os open, lots of egg-white-like cervical fluid, ovarian pain, elevated basal body temperature to name a few.  In my case, ovulation is starting to get a bit uncomfortable.  Am I really feeling new pain on the left or am I feeling pain there because I think I should be feeling pain there because I now know that there’s a fibroid there that the doctor has told me needs to be surgically removed?  I feel this discomfort every month.  Isn’t that a bit strange considering that we supposedly ovulate on alternating sides?

Anyway, I called to let the office know that I ovulated.  One of the doctor’s nurses called me back and gave me the good news about my FSH and estradiol levels.  She was far more informative than the other nurse I talked to last week about my test results.  However, she also wanted to talk to me about my x-ray.  Huh?

Evidently my doctor has been carrying around my chart with him.  My new medi friend says that it’s not unusual for a doctor to carry around patient files.  Ok.  Back to the story.  So, he has just recently looked at my HSG picture.  (He wasn’t the doctor that ordered or performed the HSG.  However, why was he looking at the film?  He supposedly had already looked at it and decided that I didn’t have a Mullerian Anomaly.)  What?  And she said that he’s going to want to do a sonohysterogram on CD6 next month.  What?  After the ultrasound he did at my appointment, he very confidently told me that the fibroid is definitely causing me problems; a sono was NOT necessary; get on the books for a myomectomy.

Why has his story changed?  Did he forget that he had already looked at the HSG?  Did he forget that he said a sono was no longer necessary?  Did he forget that he wanted to schedule me for surgery?  Or did he receive some input from one of his partners or the radiologist with regard to the HSG or recent ultrasound?  Is he confusing me with another patient?

Can I just say that I’m very frustrated and that my trust in this medical professional is waning?  Three different doctors; three different diagnoses; at least three different protocols.  It’d be nice for there to be some agreement with regard to a plan of action, particularly between my new OB and this RE.  Or do I need to go back to the drawing board?

1 Comments

Caution: You may not need a myomectomy

June 12, 2008 at 1:12 pm (advocacy, awareness, empowerment, grief, healing, miscarriage)
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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.

9 Comments

Gardens, Boga, and Mental Health

May 28, 2008 at 10:45 am (awareness, depression, grief, healing, miscarriage, recurrent pregnancy loss)

A couple of weeks ago I decided to go see the psychologist again.  I was starting to flip out, mostly because my health insurance company was being stupidly noncompliant regarding my benefits.  My amazing chiropractor was the one to suggest that I talk to the psych again.  It was a good but tough session.  He told me that I need to schedule - as in write it in my calendar - self-care time.  “Why will that work?” I stubbornly asked.  “I can just decide NOT to do it like everything else I blow off on a daily basis.”  The difference, I discovered yesterday, is that instead of asking myself what I would like to do, I need to tell myself what I should do.  Aha!!  So, today I have my list and am already crossing things off.

This morning I attended a “boga” class.  The class combines ballet and yoga and really kicked my flabby ass.  I’m certain to be sore in the core, legs, and lower back.  I DID IT, DR. S!  I scheduled a class and DID IT!  The instructor told us to pick one thing to focus on during the class.  I chose RESTORATION.  In my mind that word combines healing, calm, energy, blood flow, breath.  So, perhaps I “killed” a few birds with that stone.  (Not such a great metaphor for yoga, but too bad.)

I have spent more time with family, more time outdoors, and more time in my garden recently.  I have avoided e-mail.  I haven’t been keeping up on my google alerts.  I haven’t been frequenting the blogs I normally read.  Instead, I am focusing on nature over technology, organic healing over technologically-reproduced grief, relationship over escape.

Next week I start on new paths of inquiry, both professionally and personally.  I’ll blog about it from my summer home, Denver.

2 Comments

where am i

May 22, 2008 at 10:16 am (awareness, depression, grief, miscarriage, recurrent pregnancy loss)

where am i

Some days I know where I am and why.  I know who I am.  I have a purpose.  Some days nothing makes sense.  Today my mind is scattered - responding to different on-line groups, procrastinating some big projects, half-way through editing a friend’s article, drinking coffee and not water, still not ready for my parents’ visit, avoiding calling the insurance company, twiddling my fingers until my appointment with the reproductive endocrinologist on June 5.

Ack.

It’s been a few weeks since I have read an ICAN post.  It’s been a few weeks since I have worked through my usual google updates.  Perhaps the shift from professor to simply mom and wife has thrown off other aspects of my routine.

Then again, it is more than time to begin establishing new habits.

2 Comments

Anomaly

May 3, 2008 at 6:27 am (Missoula, Montana, Mullerian anomaly, Western Montana, awareness, cesarean, grief, miscarriage, testing)
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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

6 Comments

Infertility Update

April 20, 2008 at 4:03 pm (awareness, grief, miscarriage, testing)
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I have a child and yet I am experiencing recurrent pregnancy loss.  It’s a strange subset of infertility.  I’m trying to hunt down bloodwork results from 10/07 so that my current OB, who is more specialized in infertility, can fill in the gaps.

All of my bloodwork came back fine though I don’t yet know the exact numbers for anything but TSH.  The bloodwork that was done included TSH (I was normal at 1.3), prothrombin time (PT), thromboplastin time (APPT), russell viper venom (dRVVT), and flow cytometry. 

I saw a new OB this month.  In addition to a HSG for potential structural problems with my uterus due to age and/or the previous cesarean, he recommends testing for inherited thrombophilia.  He will also fill in any gaps that may exist with regard to bloodwork.  From what I can tell, there indeed are more tests that need to be run before I can rule anything out.  For instance, some women with lupus anticoagulant (LA)actually do have normal APTTs.  He does not think we should waste our money on genetic testing.  Also, anticardiolipin is similar but not the same as LA.

I was really disappointed to learn that the only pathology that the former OB’s office does is just confirm whether or not the tissue is normal (not infected) pregnancy tissue.  No immunologic analysis typically takes place.  In my case, I have twice wasted $116.00 on this.  Luckily my insurance provider does pay for most of this cost.  However, I have just discovered that I could still have tests run.  Evidently, slides are preserved by the pathologists in parafin blocks, and they can be sent off to labs.  Click here to read about this.  I can somewhat vouch for the information on this site since my current OB mentioned Dr. Beers several times during our consultation.

More information:
Alan E. Beer Center for Reproductive Immunology and Genetics (link to research page)
Reproductive Immunology Associates (link to miscarriage page)

2 Comments

i should have

April 20, 2008 at 2:28 pm (grief, miscarriage)
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I should have a newborn.  I should be on sick leave (my University doesn’t really have maternity leave for faculty) and tending to my fresh baby.

I should be in my 3rd trimester getting ready for my June due date.  This baby’s due date couldn’t have been more perfect.  I should be getting all kinds of pregnancy attention from strangers and friends alike.  I enjoyed basquing in the limelight when I was pregnant with my daughter, and I loved being pregnant.

I should be 18 weeks and 2 days pregnant.  I should be feeling my baby move, and he should be responding to me in utero.  I should be enjoying my pregnancy with my best friend who is also pregnant, about 14 weeks by now I believe.

I shouldn’t have medical bills that I don’t understand.  I shouldn’t be waiting nervously for late menses so that I can schedule a HSG.  In fact, I shouldn’t be having menses at all!  I shouldn’t be grieving daily for three lost pregnancies, drinking heavily, sleeping poorly, putting on weight, avoiding exercise, stressing about the past, stressing about the future.  This shouldn’t be my life.  This shouldn’t be anyone’s life.

3 Comments

The Cost of Miscarriage

April 18, 2008 at 6:53 pm (Missoula, Montana, Western Montana, awareness, grief, miscarriage)
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It’s been a while since I posted last.  I guess it’s that time in the semester where I’m so busy teaching, advising, and attending events that I have no time for anything else!  Plus, I had a major job during a “Super Regional” conference that took place in my town last weekend.

I have received a couple of bills from my 2/23/08 miscarriage:

LEVEL 4 HOSPITAL SERVICE

  • Recovery phase 1 lvl 2 per hr $419.25
  • Path group 3 122.00
  • Venipuncture x 2 26
  • ABO group 38.50 (they had access to this info)
  • RH type 31.25 (I told them I was RH+)
  • Antibody screen 83.50 (???)
  • CBC 48.25 (narrowly avoided a transfusion!)
  • surgery major 1 1207.00
  • set up for surgery 641.50
  • anesthetic 42.50
  • propofol 80.11 (damn, that had better have been good stuff!)
  • lidocaine 7.50
  • sevoflurane 231.20 (now, THAT better be good stuff)
  • metoclophramidercar (say that 3 times fast) 16.38
  • dexamethasone 16.38
  • fentanyl 16.38
  • hydromorphone 16.38
  • ondansertron x 2 32.76
  • fentanyl 16.38 (again?)
  • recovery/observation 75.00
    GRAND TOTAL: $3168.22

That’s what a curettage (following/during miscarriage) costs you (or more).  When it’s all said and done I’ll owe $650.29, plus I received a $97.00 bill for the follow-up with the OB.  It should have been a $15.00 copay, but since they coded it maternity, my insurance company isn’t paying for it, claiming that it’s covered under my global (maternity) copay.  THANKS FOR THAT NICE SWIFT KICK TO MY BROKEN UTERUS.

Still, nearly every moment of every day I remember what I have lost this past year.  And there’s no hope yet of moving past it.  There’s always tomorrow . . .

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