The Trial of Labor

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

Telling . . . one of the top searches that brings people to my blog these days is “myomectomy aftermath.”

Today I was in class trying to follow along in a fast-paced discussion of voice pathologies.  One such pathology discussed was the Human Papilloma Virus which can attack the vocal folds.  Colds and other viral infections can manifest as papillomas (small harmless epithelial tumors) on or near the vocal folds (membranes of the voice box).  This is called Recurrent Respiratory Paillomatosis (RRP).

RRP shows up in children, and the suspected cause is a HPV-infected mother.  When a baby descends through his/her mother’s birth canal, the baby can contract HPV if the mother carries the virus.  Adult onset RRP evidently is becoming more prevalent, possibly due to changing sexual practices.

In the course of teaching us about HPV and the respiratory equivalent, RRP, the instructor stated that pregnant women with HPV have have their babies “delivered” via cesarean section.  The instructor was given this information by . . . you guessed it . . . a DOCTOR!  I couldn’t hold my tongue.  I wanted my colleagues to be sure to know that although a doctor may suggest that a pregnant woman with HPV should have a cesarean, that it’s not a mandate.

I wish I had told my colleagues that uniformly recommending cesarean delivery due to HPV is not an evidence-based practice.  Why is this important?  What if a pregnant woman enters this practitioner’s speech & hearing clinic complaining that her voice is hoarse and weak, and upon further investigation, it is discovered that she has RRP.  This practitioner may tell her that she’ll have to have a cesarean because she has RRP.  That may be one more woman who, heeding the advice of her care providers, would be cut.

Let’s look at some of the literature on the net about both HPV and RRP. (See sources at the bottom of this post.)
Frequency:  According to the RRP Foundation, there are maybe 20,000 active cases of RRP in the U.S., and the CDC estimates that less than 2,000 children contract RRP in a year.  HPV is quite prevalent - approximately 20 million Americans are infected.
Transmission.  Active condyloma during pregnancy or HPV can cause a baby to become infected, but occurrence is deemed RARE.  As stated previously, RRP is becoming more prevalent in the adult population possibly due to changing sexual practices, and HPV has a strong connection to sexual practice.
Childbirth recommendations:  Cesarean delivery is not completely protective from RRP though recommended for consideration when visible condyloma is present in a primaparous pregnant patient.  Cesarean delivery is not protective against RRP in mothers with genital warts.

Well-meaning practitioners from other unrelated fields can and do contribute to the cesarean problem.  However uncomplicated a cesarean may seem when presented antiseptically from a medical provider or behavioral clinician, important questions are not being asked:

1. How likely is transfer of the presumed pathogen
2. How is cesarean delivery protective against the transfer of specific STDs and other viral infections
3. What physical complications can arise for the mother with a cesarean
4. What physical complications can arise for the baby due to a cesarean
5. How does cesarean delivery affect the mother-baby dyad
6. What psychophysical or emotional complications can arise after cesarean delivery (or after traumatic birth experiences); how and when do they manifest
7. What complications may arise (at birth, in childhood, during puberty, in adulthood) from possible RRP transfer
8. How should the patient/client prioritize the risks/benefits of vaginal or cesarean birth
9. What does the mother (and her support team - partner, family members, close friends, etc.) desire
10. Who is more important - the mother or the baby

This last question is the most perplexing, it seems, for the medical community.  Babies are born innocent and vulnerable.  They are unable to advocate for themselves.  In protecting the rights of the unborn or barely-born (not that I oppose that ultimately, I might add), care providers knowingly and unknowingly subvert the rights of the mother.  The mother is here right now.  She is hopefully a positive contributor to her community.  She may already care for other children.  She may have a life partner.  When her health and happiness is compromised for the well-being of her innocent child, is our society really any better for it?  Which is more important - kinetic energy, a life in process, a current contribution . . . or potential energy, a life about to begin, a possible contribution.

I hope readers will take to heart the broadest implications of this post.  First, medical doctors and insurance companies are not the only ones adding to the increasing cesarean rate.  We find well-meaning contributors in some of the most unlikely places.  Second, questions beyond “how easy is it to fix” must be asked when the life and well-being of the mother-baby dyad is at risk.

For more information on cesarean delivery, please visit the International Cesarean Awareness Network (ICAN) and Childbirth Connection.

Sources Consulted:
CDC information on HPV - http://www.cdc.gov/STD/HPV/STDFact-HPV.htm
Condyloma in Pregnancy Is Strongly Predictive of Juvenile-Onset RRP - http://www.greenjournal.org/cgi/content/full/101/4/645
Course notes
eMedicine - http://www.emedicine.com/med/topic2535.htm
Genital HPV Infection Learning Module - http://depts.washington.edu/nnptc/core_training/clinical/PDF/HPV2008.pdf
RRP Foundation - http://www.rrpf.org/
Women’s Health, HPV and Genital Warts - http://www.womenshealth.gov/faq/stdhpv.htm

Tags: genitalHPV, HPV, papilloma, recurrent respiratory papilloma, RRP, cesarean rate, cesarean epidemic, cesarean awareness, ICAN, protective cesarean

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?

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.

I wish I was kidding.  I’m not.  I was insensed to read that a woman in Colorado was denied coverage because of a prior cesarean.  I hope you’ll read Navelgazing Midwife’s post.  It’s a good summary of the situation.

Ick.

slowly

with
great caution

in
halting
measured step

I creep
from
sanctuary
dark

to leave
solace
safety
and sorrow
behind

to
sidle
in uncertainty
into
the
chafing
cutting light

head bowed

eyes
swollen red

mind bruised

spirit crushed

heart
mercilessly
torn

Read more . . .

As you can tell, I am back to reading my google alerts.  I came across a post titled “Cesarean vs. VBAC - Birthing Story” and decided to read it.  It seems to me that this is the very type of woman who needs the support and resources that ICAN, CIMS, Childbirth Connection, Conscious Woman, and the like provide.  Women are understandable very protective of their birth stories, so I didn’t post a comment.  However, she may come across my post if she tracks her pings.

I’d like to address specific details of her story.

1. “I was instructed to read through the risks of VBAC and give in my consent in writing…. this during my first visit to the doctor.” She wisely decided to wait to “consent” to the mode of delivery.  Understandably she had concerns and questions due to the manner in which the information was presented to her in her first visit.  Furthermore, she states that her doctor never seemed to discuss the benefits of normal birth.
2. “No mommy would want to carry a healthy baby for 9 months only to risk the baby’s health during delivery.”  Absolutely!  And natural birth advocates believe that every woman deserves the right to weigh the risks and benefits of cesarean versus normal birth for herself.  OBs are not upfront about the risks to both baby and mother from cesarean delivery much less the harm that occurs once mom and baby are home.  Doctors suggest procedures and tests that have not been proven to aid the birth process yet may have a negative impact on normal birth.  These include continual fetal monitoring, artificial rupture of membranes, induction, vaginal exams, IV, episiotomy, and the list continues.  These interventions usually only benefit the doctors and nurses.  And did you know that amniocentesis carries a substantial risk for pregnancy loss?
3. “My mid-wife advised me to wait till the 35th week before I made any decision. But the doctor would not wait till such time. Even before I gave my written consent on my preference I got a call from doctor’s office about scheduling my C-section for the 13th May. (my due date was 26th May).  This irritated me to great levels. While one of the major benefits I was going to get by opting for C-section was a date of my choice, the doctor had deprived me of the same by just giving me one option.”  OBs suggest that it is safer to perform a cesarean before Mom goes into labor.  However, scheduling a cesarean 2 weeks before a due date is risky.  It is sad that this OB was intent on taking this woman’s last “choice” away from her.
4. “Besides, I knew that I was making good progress and could go in for VBAC.”  Women should trust their instincts about birth and surround themselves with people who support their needs and desires.
5. “During my 40th week appointment, the doctor examined me and said that I had made no progress at all since 37th week. The baby’s position and the cervix measured the same. She also scared me that the baby was big and it could be a very hard delivery for me.”  The next day at the hospital she began labor on her own. 
6. “The nurses who were monitoring me repeatedly started asking me if I really wanted to go in for C-section which was scheduled at 11:30am.”  Hooray for her nurses!!  It seems like they wanted to encourage her to have a normal birth!
7. “I got a call from the doctor immediately … I must say it almost sounded like a threatening call. She said if I didn’t go for C-sec at the decided time, she was not going to be available for the entire week and that some random doctor from the hospital.”  Yes, that was a scare tactic.
8. Her “big” baby weighed just over 7 pounds.

The reason I’ve quoted and listed these points from her story is that this story is all too common.  When are we going to stop this abuse, this subversion, this last form of modern sexism?

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.

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.