Recurrent Miscarriage: My happy endings

I am somewhat pleased and sad to know that my post about Pregnancy Hormones and Miscarriage is consistently one of my top posts.  I wish I could hold everyone who comes by looking for answers.  I remember being there.  It’s still a healing wound that opens up from time to time.  I still grieve that I’ll never know those souls I lost.  Or do/will I?

Nutshell background:

After an uneventful first pregnancy that produced my 6 year-old daughter in 2004, I suffered three consecutive first term losses.  Getting pregnant has never been my issue; staying pregnant was becoming a real problem for my body and my psyche.  The last straw, the one that nearly killed me, was the 10-week loss, and the OB standing over me as I woke from the curetage telling me my uterus was too thin to ever consider a vagina birth, and this same OB wanting to put me on Clomid to treat my losses.  This OB had also refused to test my progesterone levels, saying that even if they were low she’d not treat for low progesterone.

Here’s what I had to do:

  • Change providers – I’m in a small town, so no one is super specialized in this area, but I at least found a doc willing to work with me; he had also dealt with infertility personally
  • This OB did ultrasound to check for PCOS (which he thought he found in me) and HSG to check for uterine abnormalities
    • PCOS markers may include u/s, but that’s not the only determining factor, so I ruled that out myself
    • The HSG showed an abnormality, alright; the OB thought it was a double uterus
    • I decided it was time to find a specialist
  • I found a yahoo group that supports women with Mullerian Anomalies (double uterus is a type of MA)
    • This group has an anonymous consulting doc who looked at my HSG film and believed the anomaly to be either a septum or bicornuate uterus shape
    • This group had a fantastic resource – a database of recommended reproductive endocrinologists and repro surgeons
  • Because I have family in Denver and was planning on being in Denver the Summer of 2008 for a voice science research program, I chose a RE in Denver.  Tough stuff when you’re essentially ‘out of network,’ but thank God we ponied up and did it.
    • The RE looked at my film and didn’t think it was a MA; he was sure it was a fibroid
    • SHG confirmed his suspicions
    • Extensive blood work revealed . . . LOW FRIGGIN’ PROGESTERONE . . . actually, really really crappy luteal phase progesterone (I am still so angry with the OB who refused to test my progesterone; I still blame her for that loss.)
  • The RE also recommended a myomectomy to remove the fibroid
    • He wanted to do it laparascopically which means cutting through connective tissue and the fundus to reach the fibroid
    • I didn’t want the integrity of my uterus further compromised and requested a hysteroscopic myomectomy instead; he agreed
    • Folks, do your research so you can advocate for your needs!!  I can’t stress this point enough!!!!
  • Thank goodness we did the hyst myo because instead of a regular fibroid, he found adenomyosis which he attributed to the PREVIOUS CESAREAN!
    • Hyst myo turned out to be the best way to remove as much of the adenomyosis as possible
    • Otherwise my uterus looked normal, no thin LUS, cesarean scar wasn’t even visible
  • This RE had a drug protocol that worked to address my progesterone deficiency
  • 3 months later my local OB examined my uterus via ultrasound and said that I was healed and ready to TTC!
  • I also made sure that the RE confirmed that the integrity of my uterus was not compromised from the surgery; my OB was nervous about ‘letting me’ VBAC

My happy endings:

I naturally conceived twins in 2008.  Luckily, I was in Denver over Christmas, and the RE was involved with my early pregnancy care.  My HCG levels were abnormally high, and an early early ultrasound revealed twins.  I enjoyed an easy term pregnancy (39 weeks!) with di-di twins!  My twins are such a blessing – can’t believe they’re almost TWO!

I became pregnant again in October 2010.  God has a sense of humor for sure.  I followed (more or less) the same treatment plan for low progesterone.  The first week of my pregnancy was stressful because I was having a hard time getting ahold of my OB and who had different ideas of how to treat low progesterone that conflicted with the RE’s protocol.  Can you believe this RE’s nurse was still supporting me through this stressful time . . . 2 years later?!  I was able to e-mail her and call her and they were willing to oversee my meds for the 1st trimester if I couldn’t get it worked out with my OB.  I had to ‘correct’ my OBs script a couple of times, and thankfully he was compliant.

Again, you have to advocate for what you need.  Right this minute.  Trust your intuition.  Know that infertility and pregnancy loss is more ‘art’ than ‘science’ at this point.  Know that there are widely disparate ‘camps’ when it comes to treating infertility and loss.

Currently, I am 37 weeks pregnant with my Happily Ever After baby.  May you find a way to yours!

Supplementing Pregnancy with Progesterone

It amazes me that OBs can still be resistant to testing for progesterone deficiency and treating it.  After two consecutive losses and a clean blood panel, I begged my OB to test my progesterone levels.  I was pregnant again.  Not only did she refuse to test, but she also said that even if I tested low for progesterone, she wouldn’t supplement.  Her “brilliant” idea to treat pregnancy loss was Clomid!  (You can read tons of stories about women taking Clomid and suffering miscarriages as well as being blessed and challenged with multiple gestation issues.)

I lost that baby at 10 weeks gestation.  It died a few weeks earlier.  I was devastated and so angry.  I’m still angry at that nutjob OB.  For numerous reasons I transfered to a more compassionate OB who had been through infertility with his wife and also seemed to enjoy thoughtful discussions with his patients.  Although he misdiagnosed my problem, he supported me in seeking a second opinion with a reproductive endocrinologist (RE).

The RE discovered low low low progesterone.  The RE also found adenomyosis in my uterus that was distorting the shape of my uterus.  He believes that my cesarean caused the adenomyosis.  He removed as much as he could.

I received the all clear to TTC and quickly became pregnant again.  (Becoming pregnant was never my issue.)  I began supplementing with progesterone via 17-hydroxyprogesterone shots.  An early ultrasound discovered that I was carrying twins.  (Recall the one OB’s suggestion to give me Clomid?!??!!!!!!!)

I continued the progesterone injections and weekly progesterone tests during the first trimester of that pregnancy.  My progesterone levels seemed ok on their own, but it was prudent to continue especially since specialists don’t know what a good level of progesterone is for multiple gestation.  After three consecutive losses, I carried my twins to term. :)

I accidentally became pregnant during my September 23, 2010 cycle.  I suspected it almost immediately after conception, so I began early testing.  By CD 28 I tested positive for pregnancy.  I contacted my OB’s office (my previous lovely OB died the day he cleared us to TTC in 2008) on a Friday, and was frustrated that it took until the end of the business day on Monday to get a script.  In the meantime, I contacted medical friends and even the RE’s nurse.  I was amazed that she got back to me and was still willing to advise me . . . 2 years later and from out of state.  What a blessing.

Your typical OB isn’t always well-equipped to deal with early pregnancy issues.  My OB recommended 100mg oral progesterone.  I double-checked this with the RE’s nurse, and she did NOT recommend this treatment.  My SIL also told me some sketchy stuff about oral progesterone supplementation.  The RE’s nurse said the best thing to do is either go back on the shots or do 200mg prometrium vaginally.  Since prometrium is so accessible and doesn’t require a stick in the bum, I went that route.  I also want readers to know that it took a while to straighten out the script, but by Tuesday I had what I needed thanks to a lovely independent pharmacist, the RE’s nurse, and the OB’s office following through with exactly what I requested.

I just want to offer this information up for those who are struggling to make sense of their losses.  Really, if you think you suffer from low progesterone and/or a short luteal phase, you need a medical script for progesterone supplementation.  It is unlikely that natural supplements will do the job . . . maybe for marginal progesterone?

Someone on one of my advocacy lists said that taking prometrium vaginally seemed “iffy” to her.  I must admit that irritated me, but she doesn’t know anything about me or how seriously I consider my health decisions.  Had I not been directed to this reproductive endocrinologist in 2008, I would probably not have my twins or be 16 weeks pregnant with my fourth and final baby.

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