THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Thursday, December 6, 2012

Ovary-less?

Sooooo...welcome to my blog.

I have a daughter with type 1 diabetes.  She and I both have celiac disease, and I'm probably losing my last ovary today.

Yeah, I'm slick like that.

Just throw it in the mix -- BAM!


(Disclaimer:  That's the gist of this post.  If talking about ovaries will freak you out, then now's your chance to leave.)

About ten years ago, I was pregnant with my 1st baby.  We had just celebrated our 2nd wedding anniversary and were preparing to buy our 1st home.  Ahhhhhh...

I had noticed some right lower abdominal pain, but blew it off thinking it was just .... well .... whatever it was.  I ignored it until I couldn't any longer.

"I need to prepare you for the possibility that this could be an ectopic pregnancy, Wendy.  You're about 8 weeks along, and that's typically the time frame when an ectopic pregnancy reveals itself."

One stat sono later, and I found myself sitting alone in a room, waiting to speak with my doctor before I could leave.

It wasn't an ectopic.

My baby was healthy and in the right place!

I had bilateral ovarian dermoid tumors (also called dermoid cysts or teratomas), and the one on the left side (not the side where I was having pain) was the size of a grapefruit.  It needed to be removed as soon as possible, after 12 weeks to avoid general anesthesia during the 1st trimester.  With a growing baby, there wouldn't be enough room in my tummy for this thing, and the risk of having it rupture under pressure posed a potential threat to both of our lives.

And so, at 14 weeks, I had it removed.

I remember waking up after surgery and the doctor telling me that he left about 5% of my left ovary.  He explained that he couldn't see the right side without causing too much uterine irritability (which would cause premature labor), so he left that one alone.  A "sliver" of my left ovary remained, because we didn't know what the future would hold for the other side.  This was my first baby, and he was trying to preserve what he could in case we wanted more children.

He couldn't do it laparoscopically, and I was in the hospital for 5 days following surgery. Anyway, the rest of my pregnancy was uneventful.  I went into labor at 36 weeks, and delivered a happy, healthy baby girl without any complications.  Two more uncomplicated pregnancies and happy, healthy baby girls would follow within a few years.  (And, interestingly, when I had my 1st sono with Tink, we discovered that it was the left-sided sliver which had ovulated.  Crazy to think that we were so close to not having her at all!!!!  Thank goodness for that sliver!!!!)

After Tink was born, my doctor wanted to remove it right away.  The problem?  This dermoid appears to be encased inside the ovary.  There's no sliver to be left behind.  The entire thing needs to go...and...that would mean that I would lose the majority of my hormone factory, resulting in menopause.

"You won't survive ovarian cancer, Wendy.  You have three babies and a husband who needs you. We need to get it out right now.  Why take the risk?"

I couldn't fathom to possibility of inducing menopause while trying to mother a 3 year old child with type 1 diabetes (who had just started wearing an insulin pump), a 16 month old toddler, and a newborn.  I agreed to consult a GYN-Oncologist, who said it was fine to leave things alone as long as we followed it closely with annual sonograms.  At the first sign of any changes, it would need to come out immediately.  If I made it to 40 years old without any changes, it would need to be removed then.

And so here we are.

At 40.

Today's the day.  This time I'm not pregnant, so the doctor is planning a laparoscopic procedure and I'm planning to come home today.

And that's the latest news from my corner of the internet.

Be back soon!

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13 comments:

  1. I hope you really DO make it home today! Being ovary-less is...exactly what they say it is! Its a struggle to find the right hormonal balance afterwards and they aren't kidding when they say your hot flashes may be SEVERE...but you will get there eventually!

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  2. thinking of you today, hope you feel better soon and the induced menopause isn't too horrible

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  3. HI, Wendy, I'll be praying for a good procedure today and a quick recovery. Thinking of you and the family! Love, Jessica

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  4. Thinking of you today with best wishes for a quick recovery...and I know who I can talk to if dermoids recur.

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  5. I lOVE you my friend and am sending lots of love, prayers & positive vibes your way!
    Xoxo
    Kelly K

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  6. Thinking of you this day and the days to come.

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  7. Wow. This is huge news. I love you for sharing this story, and to know about the egg coming from that little sliver. AMAZING.

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  8. I had both ovaries removed, along with my uterus, at age 39. I have 3 daughters as well...my youngest is the type1 diabetic. She had not been diagnosed at the time..that would come 10 1/2 months later. But, it was nearly a year after I had been diagnosed with breast cancer and after I finished chemo( which had put my ovaries into hibernation) my ovaries I guess were trying to start back up again...and I had the grapefruit -sized cyst as well. My doctors thought it best if all was removed due to my history. And my thought was...yes, whatever it takes to keep me around for my family as long as possible. All this to say...... Since the surgery I have often thought that a hysterectomy/oophorectomy is the best thing ever!! Yes, some hot flashes, but not bad...and I used to always be cold. This puts my and my husband's internal thermostats about the same. Pretty convenient:). And not having to worry about and deal with the discomfort of periods is FANTASTIC!! I hope you feel the same :). Thinking of you during your recovery.

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.