Wednesday, June 21, 2017

PCOS & Our Family

So...there really is no catchy title for this sort of post. Before I start, I debated about this post.  Sometimes the choice to post details about ones life comes with consequences, and I wasn't sure I wanted to deal with anything else. However, after getting Emma's permission, realizing there's really no part of our lives PCOS isn't touching, and in hopes of gaining understanding from we go -

Emma's been going through some tests for a while now.  She was having some "lady issues" and one thing led to another testing wise.  Here we are on the other side of a few diagnosis.  The first was the diagnosis after ultrasound of a bicornuate uterus. Never heard of either.

From -

Bicornate uterus is a congenital (from birth) disorder of the uterus, resulting in a misshapen uterine cavity. The disorder is characterized by a major indentation at the uterine fundus, or the top, center portion of the organ. The result is a heart-shaped uterus, with a partially or fully divided center cavity.
A bicornate uterus is considered a Mullerian duct anomaly, and may complicate or endanger pregnancy. Because the irregular shape of the uterus, fetal growth may be prohibited or restricted, causing miscarriage, recurrent miscarriage, or pre-term labor.
A bicornate uterus may also be known as a heart-shaped uterus.

At this stage in her life, it presents no issues other than anxiety about her future. Things like how to tell your potential spouse that your beautiful heart shaped uterus also comes with a 63% miscarriage rate in the second trimester, so kids are iffy at best and will probably involve a long painful process just for a chance at carrying to term.  Again, not a problem now, but for a kid who is already dealing with anxiety, this wasn't great news.

A few weeks after that, and more blood work, I got a call from her doctor letting me know a few hormonal things, and that she has PCOS - Polycystic Ovarian Syndrome.  What is that, you ask?
 (source -

Polycystic ovary syndrome (PCOS), also known as polycystic ovarian syndrome, is a common health problem caused by an imbalance of reproductive hormones. The hormonal imbalance creates problems in the ovaries. The ovaries make the egg that is released each month as part of a healthy menstrual cycle. With PCOS, the egg may not develop as it should or it may not be released during ovulation as it should be.

PCOS can cause missed or irregular menstrual periods. Irregular periods can lead to:

  • Infertility (inability to get pregnant). In fact, PCOS is one of the most common causes of female infertility.
  • Development of cysts (small fluid-filled sacs) in the ovaries
Without getting into the details of what her own reproductive system is/isn't doing, this diagnosis was/is scary for a variety of reasons.  First, again, infertility issues for a kid who wants kids. Painful for her, but also not something a mom can't fix. Not that it's impossible, but highly unlikely.  Combined that with her uterus issue and adoption is really what we are promoting for her.  Her family picture can look the same in the end, but the road to that end goal will just be a different path.  Something that will take us all time to get used to.

Besides the fertility issues, PCOS can do a number on the rest of your body.  There are a lot of symptoms no teenage girl should have to deal with. Nobody should have to deal with. I won't list them all here, nor will I share which ones she has had to deal with, but feel free to educate yourselves through google or ask me privately if you have questions.  From a health perspective, it can be  a doozy.  For a kid with diabetes, heart disease, anxiety, stroke, and high blood pressure in her family on both sides, this is perhaps the scariest part of all of this.  Here's some info on  PCOS and the associated illnesses -

  • Diabetes. More than half of women with PCOS will have diabetes or pre-diabetes (glucose intolerance) before the age of 40.4 Learn more about diabetes on our Diabetes page.
  • High blood pressure. Women with PCOS are at greater risk of having high blood pressure compared with women of the same age without PCOS. High blood pressure is a leading cause of heart disease and stroke. Learn more about heart disease and stroke.
  • Unhealthy cholesterol. Women with PCOS often have higher levels of LDL (bad) cholesterol and low levels of HDL (good) cholesterol. High cholesterol raises your risk for heart disease and stroke.
  • Sleep apnea. This is when momentary and repeated stops in breathing interrupt sleep. Many women with PCOS are overweight or obese, which can cause sleep apnea. Sleep apnea raises your risk for heart disease and diabetes.
  • Depression and anxiety. Depression and anxiety are common among women with PCOS.
  • Endometrial cancer. Problems with ovulation, obesity, insulin resistance, and diabetes (all common in women with PCOS) increase the risk of developing cancer of the endometrium (lining of the uterus or womb)
  • Source - 
Again, feel free to google for hours on this for more info, but the condensed version is weight control/loss is a big issue.  If that fluctuates, even as much as 5-10 lbs, hormones she doesn't want or need kick in which makes the insulin kick in and one thing leads to another but everything results in not good things.

Why did we (it was collective) decide to share all this with you? Well, first....know that Emma has a lot going on right now.  She has a lot on her plate.  Any support and/or distraction is appreciated. We are doing all we can for her anxiety with meds and therapies, and she's doing great! Second, this means a lot of changes for our family.

Our last go round with eating super healthy and exercising, I'm not going to lie, we got some kick back.  Some said we were self centered. Some said we had lost our focus and balance in life.  Some said we were obsessed. Some just thought we weren't fun anymore because we wouldn't eat pizza and junk food. We just ask that everyone is understanding this time of the reasons why we are making drastic changes.  Emma really has no choice.  We are a tight family, and we are all on board with her. There is no cure for PCOS, and even eating an extremely clean diet and exercising may not get rid of the symptoms completely, but gaining weight and not being on top of her diet will without a doubt increase her symptoms and associated health risks.  We are trying to be upbeat and positive about all the new recipes and groceries we get to buy.  She would also like a cross fit gym in the back yard, which sounds like a blast to me, so anyone who wants to help with that, feel free!

We've already had that awkward experience of her going over to someones house who was unaware of all this and made a wonderful meal for Emma....but it wasn't a meal she could eat.  We've also recently been to a gathering where Emma asked me to go through the food line with her to help her identify what she could/could not eat. I'm sure it seemed odd me stating out loud she couldn't have the breaded chicken but the grilled was ok, and no potato salad but regular salad was fine, no bananas but the blueberries are ok, and yes it's 100 degrees out, but no, you can't have the frozen treats.

So there you have it.  A little "big" something that's been going on in our lives.  We are still learning all the ins and outs of this new thing in our lives.  I've spent years figuring out ADHD, OCD, tics, and anxiety with Myles.  We will figure this out too, and in no time it will be just a normal part of our lives, like all of Myles issues are.  Just know we love you all, and we love all your wonderful food....we just might not be able to eat it : )  And seriously, if anyone has cross fit gym supplies, bring them over.  I need a monster tire!

( I hate to have to add this bit, but we are educating ourselves and working with multiple doctors, therapists, and medications that work for our family. Unless we specifically ask you, we are not looking for medical advise. : )

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