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.

Gardens, Boga, and Mental Health

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

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.

My Medical Insurance Sucks

My medical benefits coverage sucks for my needs.  Now if I were a drug addict or wanted to have an abortion, that would be just dandy.  But alas, I “only” keep losing babies.  The insurance solution for that is – stop procreating cuz that’d be best for us.  We certainly don’t need to help you with your fertility issues just because you want to have more children.

I’m not infertile.  I’m just a habitual loser in the whole pregnancy maintenance arena.  Who can help me there?  My path has taken many turns, most leading to dead ends with providers who can’t acknowledge their limits.  Most recently, I was diagnosed via an uterine xray with a double uterus and told to “keep trying.”  I would need a referral to see an endocrinologist, even though I doubt that a general endocrinologist in this town would have a whole lot of experience in reproductive endocrinology.  In fact, the endo that my insurance service agent recommended seems to do more with diabetes.  But I’m expected to exhaust in state possibilities before I pursue specialists out of state.  I have yet to find an obstetrics group in town that believes that imbalanced hormones contribute to pregnancy loss.

I’ll be in Denver this summer, and even though there are reproductive endocrinologists (RE) there that are considered “in network,” I’m not allowed to see them?  I can waltz into any urgent care clinic in Denver with a common cold and get treatment, no questions asked, but I’m not allowed to see a RE?

My employer has no maternity policy and no infertility benefits.  Great place for a woman in the childbearing years, eh?

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

Infertility Update

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)