Getting Weary from the Drawing Board

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?

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.

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)