Looking for the Silver Lining: Maternal PCOS & Autism Risk

I am sure some of you saw the results of this study into Maternal PCOS and risk of Autism.  Well if you haven’t, for the first time, researchers have identified a link between a mom with polycystic ovary syndrome (PCOS) and increased risk of having a child with autism.  I have been noticing the reaction of women to this new research throughout the day and I saw a variety of reactions – some women were commenting and blaming themselves for a child born with autism, some people pathetically used it to give a voice to the vaccine/autism debate, some women with autism and aspergers were saying ‘what’s wrong with being like us’, some women with PCOS who have had children were sharing their pregnancy outcomes in terms of whether they had children with or without autism.

My first reaction was that I wanted to give every woman with PCOS a hug today.  My heart sank for women with PCOS, imagine feeling like now you have one more issue to deal with, one more burden among a sea of health symptoms related to your health condition.   Looking for the positive I began to think we have to find the silver lining in this piece of “bad news” and it’s this: FINALLY people everywhere are taking notice of a chronic, lifelong disorder that has not been given the attention it deserves and has no cure.

I work in healthcare and every single time I bring up Polycystic Ovary Syndrome I am in awe – almost no one has heard of it – maybe now they will.

almost no one has heard of it – maybe now they will

It’s the number one cause of infertility and people haven’t heard of it.   It’s the number one endocrine disorder among women of reproductive age and people haven’t heard of it.  It causes diabetes in 50% of the women who suffer and yet we haven’t heard of it.

Clearly awareness campaigns are a must even among the medical community.  When I was at a PCOS Challenge Symposium in September I overheard two women discussing PCOS and one said when she sees a new doctor and she tells him/her that she has PCOS it’s like “they’re hearing about it for the first time”.

“There isn’t a women’s health group that is more medically underserved than the PCOS Community.”

  And this syndrome has so much confusion going on in the medical community – there are several different diagnostic criteria to choose from depending upon which side of the debate you sit on.  It’s so bad that one doctor/researcher at the same symposium said when they (doctors/researchers) discuss how to diagnose this syndrome – “it’s the person with the loudest voice” who usually wins the debate and gets his way!   Every doctor on the panel mentioned in one way or another that the current state of affairs in the medical community for PCOS is pathetic, pitiful, heartbreaking.

I follow a LOT of women’s health topics and I can safely say there isn’t a women’s health group that is more medically underserved than this community of patients. The women who suffer from PCOS deserve MORE – better diagnosis, better care, more treatment options instead of just bandaid solutions and more awareness.  It’s time to DEMAND more.

So let’s keep a positive outlook – the time for PCOS patients to get heard is now.  It is my sincere hope that this brings to light a health issue that affects up to 10% of women.  

Turn some bad news to good:  Make PCOS go viral.    #bettercare4PCOS 

 

 

For more information on PCOS:

PCOS Challenge

For more information on the Study:

Medical News Today – PCOS – Autism Link

 

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Hormone Alphabet – Vitamin D

Vitamin D set_post_thumbnail_size( 200, 200);

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Pregnancy and Infant Loss Awareness Day

October15.caToday is Pregnancy and Infant Loss Awareness Day around the world. There are lightings and other events planned around the world to recognize and bring awareness to a painful topic that so many people remain silent about.

I will be lighting 2 candles tonight in memory of my lost babies. My babies were lost due to unaddressed hormone issues.   I believe silence makes the hurt worse.  At the time of my losses I didn’t have anyone to talk to that understood what I was going through.

If you’re in Toronto the CN Tower will be lit up pink and blue and purple at 8 pm EST. You can check here for other Canadian city events at www.october15.ca

If you’ve lost a baby in pregnancy or infancy and you’d like to find support resources, whether in Canada or elsewhere – here’s a great list to get you started:

http://www.october15.ca/support/resources/

Hugs and Love to everyone who’s experienced this loss,

Sonya 

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Exploring Menstruation 70’s Style

If you grew up in the 70’s this is a must watch retro video – I must have seen this or something like it during my sex ed class in the 70’s.  Notice it’s produced by J&J?!

Here are the highlights:

  • Let me just say “Pad” technology has come a long way!  Next time you go shopping down an entire aisle of menstrual supplies, be grateful!  Gotta give a shout out to the people who develop new products for us. Seriously special panties with elastics, belts and the minipads of the 70’s look like today’s maxipads.
  • I swear to God I have never ever heard of a woman skipping her period because she had a cold!  I am absolutely certain if that were the case half of us would be sneezing all over each other.
  • Love the exercise suggestions to get rid of cramps.  Wow…no cramp I ever had could be remedied with a wall pushup or a sit-up.

  I follow a lot of discussion around menstruation including global cultural difference, individual differences in how women react to having their period and how it is talked about or not talked about within families and whether we react to our period differently over our lifespans. I think it’s fascinating and everyone’s situation is so unique.

Anyway, enjoy the journey back in time…

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C is for Cortisol – Hormone Alphabet

C is for Cortisol

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What a Weekend! Met my Kindred Spirit at PCOS Symposium!

Sasha and I

I had the lucky chance to go to Atlanta, Georgia this weekend to check out the PCOS Symposium put on by PCOS Challenge.   For me it was phenomenal for so many reasons – the best of course is that I got to meet one of my all-time favorite patient advocates and a true hero in my eyes – Sasha Ottey!

Thanks to the internet and social media, we live in an age where we can make friends with people all over the world and yet never meet them.  This weekend I finally got to meet my kindred spirit – Sasha!

Sasha is a one-woman IMG_3836powerhouse  – bringing awareness to one of the most misunderstood women’s health issues – Polycystic Ovary Syndrome (PCOS).  PCOS is the leading endocrine disorder among reproductive women and the number one cause of infertility. This life-long syndrome 10 – 15% of women & girls (depending upon which diagnostic criteria is used).  Having PCOS puts women at a severely high risk for diabetes and cardiovascular disease.

IMG_3843Here’s one of the saddest part of all:  With all of the complexities, emotional and physical suffering in women and their families – PCOS receives less than 0.1% of NIH research funding.

I learned so much about PCOS at the Symposium and I think everyone else must have too – it was information overload!  It impressed me that there were people who travelled far and wide to attend.  Costa Rica, Calgary and all over the USA, husbands came with their wives, mothers with daughters and i even saw families there together!   The experts that shared the latest research, the controversies and the different approaches to diagnosing and treating PCOS was simply phenomenal – everything from pharmaceuticals to genetics and hair removal and everything in between! If you can manage to make it to one of these PCOS Symposia I would highly recommend it.  And please, please help spread PCOS awareness where ever you go, wherever you can – I guarantee women with PCOS will appreciate it.

For more PCOS Updates follow Hormone Soup on Hormone Soup on Facebook, Hormone Soup – Twitter & Hormone Soup – Pinterest.

 

#pcos #pcosawareness #pcoschallenge

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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B is for Bio-identical Hormones – Hormone Alphabet

Bio-identical Hormones

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A is for Aging – Hormone Alphabet

A is for Aging

A is for Aging

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The Twisted Irony of Motherhood

Dark Side of the Full MoonI can’t watch this without crying…it is so personal to me and painful to listen to the stories of other women who have been through Perinatal Mood Disorder.  But at the same time it is so imperative that we hear these stories.  Even though not one of their stories is exactly like mine, I can relate to each and every story on some level:  as a woman, as a mom and as a survivor of the twisted irony of Perinatal Mood Disorder.

Just a reminder Perinatal Mood Disorder includes postpartum and pregnancy and is sometimes referred to as:

Postpartum Depression, Postpartum Anxiety, Postpartum OCD, Postpartum Bipolar, Postpartum PTSD & Postpartum Psychosis

#standwithmoms

 

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6 of the Strangest Signs of Hormone Imbalance

Burning Tongue Syndrome

Burning Tongue Syndrome

We’ve all heard of the common symptoms associated with hormone imbalance like weight gain, insomnia and hot flashes.  Here are 6 of the strange symptoms that could be a sign that your hormones are out of whack.  Our hormones have a complicated relationship with our Central Nervous System as well as our Cardiovascular Systems, as you’re about to discover.

1. Burning Tongue Syndrome

I am happy to say I have never experienced this less-common symptom of hormone imbalance but for some menopausal women it is their reality.  It is a painful and very uncomfortable sensation which feels (or so I’m told) just like you’ve burned your tongue sipping on a hot beverage.  You probably won’t have any physical signs of a burn in your mouth, but your mouth might feel dry, sticky or itchy and you might even have a metallic taste in your mouth.  Interestingly, for some women it get’s worse throughout the day and feels better at night.  

2. Formication – Crawling Skin Sensation

No, not fornication – formication.  It is the unimaginably horrible sensation of having the feeling of small insects crawling on or under your skin!  It results in itchiness and of course, most of us would scratch. The scratching can lead to damaging the skin. 

3. Tingling Extremities – (known as Paresthesia)

This symptom brings on a numb feeling or ‘pins and needles’ usually in your feet and legs or hands and arms.  I had this symptom after my 3rd baby was born and it would last for only a few seconds each time.  I didn’t have a clue what it was and it was quite scary.  Little did I know at the time, nor did my doctor, that it was associated to the sudden drop in hormone levels. Fortunately for me, when I got my hormones balanced this irritating symptom went away.  

4. Electric Shock Sensation

Can you imagine feeling like you’re being given an electric shock throughout your day?  Well, it is another one of those strange symptoms of hormone imbalance.  Even though they last for only a second – it must be very irritating and unnerving for women who experience them.  Often they are across the head and sometimes the sensation occurs right before a hot flash.  Oh Joy.

5.  Sudden Muscular Weakness &/or Carpal Tunnel Syndrome

After my 3rd baby was born, I would suddenly have weakness in my arm that would only last for a few moments but it would happen suddenly so I was afraid of dropping my baby.  Again, for me as soon as my hormones got balanced I was relieved of this irritating symptom.  It may have been a sign of Carpal Tunnel Syndrome which is also linked to hormone imbalance.   

6.  Frozen Shoulder – Adhesive Capsulitis

This is an inability to move one or both shoulders and can be very painful.  It is most common in women and especially women in perimenopause and menopause.  Not all doctors will talk about hormone imbalance on this one.  I’ve heard of doctors who don’t realize it can be related to hormones.  And don’t forget, many other joint problems/pain can also have a hormonal cause. 

 

There are other causes for all of these symptoms – it is never a good idea to self-diagnose so please discuss these symptoms with your doctor!  

Again, I know many of us with hormone issues discuss these with our doctor, only to be told “it’s in our head” (thankfully I’ve never been told that but I know numerous women who have been) or that the symptoms aren’t related to hormones.  As always, be an empowered patient:  do your homework and advocate for yourself! 

 

 

 

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