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Writer's picturewannabe_mom

[Sertoli Cell-Only Syndrome] "You did everything you possibly could."

It's September 8, 2020. Brian has his post-op today with Dr. Wald in Iowa City at 8:30 a.m. This is the appointment where they'll check his incision and go over the pathology report.


I'm not going to this appointment because: a) I have to work; b) I'd have to sit in the truck due to the 'vid; c) I can listen to the appointment on my speakerphone at home just as well as I could from the parking garage. 🤷‍♀️


Now, before you say, "I can't believe she let him go to his appointment alone!" please note the following:

  • Brian told me not to come because of a, b and c above

  • Brian enjoys hitting the road alone with some tunes poppin' on the radio

  • The appointment lasted less than 15 minutes and it didn't make sense for us to both take off work

 

We got some more answers today.


First, of course, a student doctor came in to see how Brian was doing and check his incision.


No big deal. This is only like the 16th stranger within the last six months who has examined my husband's manhood.


Everything is healing up nicely, they say. Then Dr. Wald came in and cut right to the chase, just like he did when he met with me after Brian’s surgery. I appreciate that in a doctor––just give it to me straight.

“Your Pathology results show that you have a condition called Sertoli Cell-Only Syndrome.”

Excuse me, what? Sertoni-oni syndrome? Certraloni syndrome? Sertalini, centratoni, tortellini syndrome? Serto-WHAT?

I was trying to take notes and I had no idea what the doctor just said (you know, COVID masks and face shields don't mix well with speakerphone). And get this. Brian says, “Oh yeah, I saw that on my chart in the UIHC app but had no idea what it was.”


WHAAAAATTTTT?????!!!!!

Brian sure is lucky I stayed home for this appointment because he would have gotten an earful for the full two hours on the way home from Iowa City😜. How do you neglect to tell your wife these results?! C’mon, I could have already done all my Googling! (I asked Brian later why he didn’t tell me, and he swears he did. Men. 🙄)

 

What the heck is Sertoli Cell-Only Syndrome?

In simple Teri terms:

  1. It takes two types of cells to create sperm: sertoli cells and germ cells

  2. Brian was born with a complete absence of these germ cells

  3. Hence – Sertoli Cell-Only Syndrome


Sertoli Cell-Only Syndrome (also known as Germ Cell Aplasia or Del Castillo Syndrome) is one of the rarest but most serious causes of male factor infertility.


How common is this condition?

According to Genetic and Rare Diseases Information Center, "The prevalence of Sertoli Cell-Only (SCO) syndrome in the overall population is estimated to be very low. Although precise figures are difficult to obtain, it is estimated that less than 5%-10% of infertile men have SCO syndrome. Information is limited due to the nature of the condition, as only men who have been thoroughly evaluated for infertility (including a testicular biopsy, which is necessary for the diagnosis) have been reported."


What's the cause?

The cause is not known, but it is thought to result from congenital absence of germ cells due to a failure of gonocyte migration.


What else does this mean?

  • Fertility is impossible for my husband––there are no more options

  • He was simply born this way––there's nothing he did to cause this and there's nothing he could have done differently

I always knew he was special. 😍

 

I would be remiss if I didn't tell you I was still holding on to a sliver of hope prior to this appointment. Like, maybe we could go somewhere and get a second opinion. Or maybe they need to check different parts of the testicles to find viable sperm. Or this....or that....


This diagnosis left me feeling a couple of ways:

  1. Hopeless, heartbroken and sad. Our {very small, very dull, very final} glimmer of hope is completely squished

  2. Relieved. There is no more gray area. We finally have an explanation for our infertility

The surgeon left us with this:

"You did everything you possibly could. There is not a box you left unchecked. Be proud and know you did absolutely everything in your power to determine if you could have biological children."

And that, my friends, made us feel good. We won't ever question if there was more we could have done or different things we could have tried.

 

So, where do we go from here?


Well, that is a GREAT question.


First, we just need to take a little break.

Find some closure.

Feel our pain.

Visit with our pastor.

Go to therapy.

Meet with our fertility doctor to discuss our other options.


Start dreaming a new dream.

 

Stay tuned.

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