Monday, April 25, 2016

PCOS Symposium

I'm not sure if this link even works for those that did not attend, but here is the link to the files from the symposium.    I highly encourage you to donate to PCOS challenge and attend a symposium if able!

If not, they can be viewed HERE.

Tuesday, April 19, 2016

Andrea Braverman keeps it real at the Symposium





Andrea's presentations were my favorite.   She is hilarious!   It is my belief that humor goes a long way.   I'll never forget meeting my miracle man, Dr. Pellegrini.    Infertility and PCOS are such serious topics.   Trust me, I get that.   I remember telling him, "Seriously.... you were just in all my nooks and crannies.... and you didn't even take me out to dinner, it's time to lighten up."   I deal best with humor and that's exactly how Andrea presents.  

Andrea's presentations were on Emotional Wellness in Women with PCOS and also Couples Therapy.  The reality is that when you are talking about emotional wellness, you are talking about:

  • identity
  • anxiety
  • self esteem
  • coping
  • joy
  • beliefs
  • optimism
  • happiness
  • resiliency
  • exhaustion

Andrea focused on how there are so many stigmas out there regarding PCOS, Obesity, Anxiety, etc.   She said, "Do not ignore anxiety!  Your body is trying to tell you something!"   I had to laugh about this because I can't even tell you how many times I knew something was wrong with my body growing up.   I knew it.   I KNEW IT.   And any time I said anything to my parents or my doctor, I was not taken seriously.   I was being over dramatic.   And if I were in to self torture I could wonder how many miscarriages could have been prevented had I known I had PCOS sooner.    Had I known as a teenager, I think I'd have a very different story.    But I also know that my story has inspired other women, my pain has helped other women, and even now with two children I'm still advocating for women with PCOS because I am and forever will be a woman living with this.   But Andrea made it clear that WE have PCOS.   PCOS does not have us.   

Personally, I treat my anxiety myself but I'm also in good communication with my doctors.   I eat cherries when I feel anxious (also an inflammatory fruit).    I was given this recommendation after I had Elliot, and what's ironic is my entire pregnancy with him, I craved cherries.   Cherries are proven to reduce anxiety and in fact cherry is the ingredient in several anti-anxiety medications.   I also take a Passion Flower Supplement PRN (as needed).

Andrea really had us laughing and focused on making us aware of our vulnerable places.    Focusing on knowing what burdens we carry and how to ease them is critical.   For me, it's prayer.   For others, it's counseling.    She had said that more often than not women feel that PCOS is some sort of punishment for being unhealthy, and she grounded in us that that simply is not true.   And she has the research to prove it.  

Ask yourself this question:  what about PCOS gives you stress?    

For me, it's knowing that it's a lot of work to keep me healthy.   It just doesn't happen on it's own.  

Things don't work properly and I have to be on myself to stay as healthy physically and emotionally. I worry.   Sometimes far too much.   But you know what?   It's okay.   Because I may worry, but I also care.   About myself and the other women who may be reading this.  Do I like exercising?   Absolutely not.    But you know what?   After a workout, I feel great.   I need to remember that feeling because the reality is if you have PCOS and you aren't taking care of yourself, something will shut down and you could end up with cancer or eventually dead.   It's a harsh reality.    And stress inducing.    So Andrea challenged us to find things that help us de-stress.   She suggested yoga, exercise, coloring, dancing, mindfulness practice, a hot bath, reading, and even fun sex.    

Andrea's couple session was amazing.   I was able to reach out to women who have struggled with family/inlaws who don't get it - I was able to connect.    That was important.   I made new friends.   I decided to start blogging again.   And I just have to remember that I have PCOS.  PCOS does not have me.   

So seriously ladies.... reach out to me if you need it.    I went through five years of infertility (6 miscarriages) before conceiving my son.   I then went into thyroid storm and was told more children would not happen.   My daughter is a perfect little gem and six months old.   I've made a vow to make sure I always, always, ALWAYS take her health concerns (and well, all concerns) seriously.   I've also begun working for Now I Lay Me Down To Sleep where I help mothers through the birth of a stillborn.    I refuse to remain silent about PCOS.   Silence, in this case, is not the answer.   

If I can help you - please contact me - I'll do my best.    Friendleigh82 on twitter, mamageib on instagram.


Do yourself a favor --- research SLEEP and how important it is - the Sleep/PCOS connection was astounding in and of itself.   Treat yourself to a nap.

Hugs and love,
LeLe


PCOS Symposium

On April 16, 2016, I was blessed with the opportunity to attend the PCOS Symposium in Philadelphia with one of my dearest friends.    It was an amazing event, and I strongly encourage all women to look up http://www.pcoschallenge.org/ and see if there will be a symposium offered in your “neck of the woods.”  

Attending the Symposium was not only an educational experience, but also reassuring.   Not to sound vain, but I was pleased to see how much information was being presented by world reknowned experts that I already knew.    However, there was a lot of new information and new research.

Here’s the sad fact:  Only 0.1% of government funding goes to PCOS research.   That is an appalling and depressing statistic.    And while I know money is tight and times are hard… if you have any extra funding that you could donate to PCOS Challenge, it would be greatly appreciated.  

I attended 8 sessions in total:
Advocacy and Support Resources for Women and Girls with PCOS
Lifestyle Management of PCOS: Nutrition and Exercise
Overview: Understanding PCOS
The Impact of Insulin Resistance on Long Term Health in PCOS
Emotional Wellness in Women with PCOS
Couples Therapy: Managing PCOS Relationship Challenges
PCOS Diabetes Connection: Preventing Diabetes, Heart Disease and Other Complications
Interactive Session: PCOS Case Studies, Q&A

Below you will find information from several of the sessions.   Just by looking at the titles, you can tell that some information did overlap (which is fine!).

Please feel free to reach out to me if you have any questions.   I am friendleigh82 on Twitter and mamageib on Instagram.  









Anuja Dokras and Katherine Sherif set us straight



Even though some information at the symposium over-lapped, it was good to see it presented a different way.    For example....

SLEEP

Several presentations (Emotional well being, couples therapy) including the presentations of Dr. Dokras and Dr. Sherif sent the message of the importance of sleep not just for rest but for our PCOS. As impractical as it may seem, it's been recommended that a woman with PCOS have a minimal of eight hours of sleep every night.   Every night.   It's also recommended that women with PCOS have a sleep study done (something I'm terrified of).  

Dr. Dokras presentation focused on the crazy reality that with PCOS, you really have a team and it's unfortunate that it's difficult to get all doctors on the same page.

It's almost as if there are too many cooks in the kitchen and it's our role as PCOS patients to truly advocate for ourselves as we deal with whatever issues we may be struggling with.    Hands down though, the message was you need a really thorough endocrinologist and whether you are trying to conceive or not, PCOS is a big deal.   Infertility is just one of the issues that comes with PCOS.  Lucky us, huh?    

Hirsutism 
Dr. Dokras had us focus on the question of: "Why do I have PCOS?"  And not in the "Why me?" sense but literally.... what is it that gave your doctor reason to believe you do in fact have PCOS?  

She asked if our doctors used the Ferriman Gallwey scale.   I know my doctor did because at first I thought it was some sort of taboo coloring book.    :P  



Diagnosis
From the sounds of things, we're going with the Rotterdam Criteria.    However, I'm hoping to share more about this once I receive copies of the Power Point Presentation.  


So what does this mean?   In English?   
The days of the LH to FSH ratio are over because your levels change on every single day of your cycle, it's not a true picture of what is going on.

By 2020, it is their hope that the research goes even deeper but what they're finding is PCOS goes with Thyroid and Diabetes creeps in there too.

Oh and ladies... for those of you who feel completely alone.... it's confirmed.  This is genetic.  More often than not.   The reason why your mama might not be talking about it is because these sorts of things weren't discussed in the past as openly as they are now.    Or maybe it's your aunt who has it, or your grandmother, but there is a huge genetic component to it.


Obesity










Additional information I learned at these sessions (confirmed by research!)

  1. PCOS causes weight gain, not the other way around
  2. When you do not have ovary treatment, the problem can grow
  3. Do not be shocked if menopause happens at age 51+
  4. You need to know why you are on a medication, do not just take a Rx without knowing why.  If metformin is not working for you - there are other options (I'm a glumetza gal, personally)
  5. Metabolic risks remain with PCOS following surgery, even if your ovaries are removed
  6. Cervical cancer is a real possibility, don't ignore your exams.
  7. Inflammation is an underlying cause of depression.
  8. Insulin can increase high blood pressure.   If you are told you have high blood pressure, have your insulin checked properly.
  9. Ovaries go to sleep with birth control pill.
  10. Vitamin D is necessary.  Get on a supplement.   With pollution these days, sunshine isn't enough and if you're getting all of your vitamin D from the sun - you're outside too long.   Have a supplement and do so with a meal.  5,000 units.   Without a meal, it's a waste.  
  11. Have a daughter?    Keep an eye on testosterone levels so that there is no puberty confusion.


Lifestyle management for PCOS: Angela Grassi - PCOSC16



Angela Grassi was the speaker for the Lifestyle Management for PCOS session.   I was so inspired by her presentation and decided to buy two of her books.   I was even blessed to spend a good fifteen minutes with her talking about PCOS research and picking her brain.

So let's get to it, shall we?   

First of all:  EXERCISE.   
Disturbing Statistic:  even 30 minutes of exercise per day can lower insulin resistance by as much as 50% for 24 hours.    Even a 10 minute walk following a meal will dramatically reduce insulin resistance.    Angela helped me answer my question of what is the best time to exercise with this statistic.   After dinner -- do something!    

Benefits of a healthy diet and lifestyle:
  • improved skin
  • improved hair
  • better mood
  • better immune system
  • improved fertility
  • aid in weight loss
  • support a healthy pregnancy
  • maintain healthy blood pressure
  • reduce risk for diabetes
  • prevent cancer
  • extend your life

Portion Control:  Take a looksie ladies!  This is the new research.


So as you can see, portion control is one thing --- but take a look at that.   Veggies is now 1/2 and protein is 1/4 when in the past you may have been taught the opposite.   However, protein still is beneficial for us and we can also get protein from our veggies.

But.... let's talk eggs for a minute, shall we?
Several presenters mentioned this fact - so it's worth noting.   Eggs used to be known as a concern.  Especially, because of cholesterol.   This is no longer the case.   But here's the scoop.   We need healthy fats in our diet.   This is true.   HOWEVER.    The inexpensive eggs in the store, most of them are omega 6's and those aren't what a PCOS gal needs.    It was repeatedly recommended that we have cage-free omega 3's.    With PCOS we're dealing with inflammation issues.   That's a no brainer.   Cage free omega 3 is where it's at.    I spent some time researching this further and the research on this is a bit scary.    This website is less scary.   If you're going to google, proceed with caution.    The point is we need to not only focus on what we are eating but also what our food was eating.   

Wait... LeLe.... did you say we are dealing with inflammation issues with PCOS?

Yep.... true story.   Luckily, the author of THIS STUDY/Article was also present at the Symposium and she broke it all down for us.  

So again --- shameless plug:  If you can donate to PCOS Challenge, please do so!   These professionals went above and beyond to give us the latest, most up to date findings.

Now.... back to inflammation.    Starchy processed carbohydrates and high amounts of carbohydrates increase insulin release and trigger inflammation.   So things to stay away from - as appealing as they are.... include:
  • cereals
  • white bread
  • white rice
  • baked goods
  • crackers
  • candy
  • sugary drinks
Instead focus on healthier carbohydrate containing foods such as whole grains, fruits, vegetables, beans and legumes.

Are you ready to have your mind blown?
This is something I've known for years.
YEARS.
And it's finally confirmed.

STOP DRINKING COWS MILK.

STOP.

JUST STOP.    SAY GOOD-BYE, AND MOOOOOOOOOVE (see what I did there?) ON!

When I was pregnant with my son, I found myself throwing up every time I had cows milk.   I was so naive, thinking to myself - "How will my baby get calcium?"  - silly me, there are plenty of things you can have that are healthy for you and baby with calcium.    I gave up cows milk when I was pregnant with Elliot in 2011 and haven't looked back.   I don't miss it and it made a significant difference with my PCOS labs.    Anuja's presentation confirmed this research.   As did the Case Study session at the end of the symposium.   We are the only species out there that relies on the milk of another species.   The hormones in cows milk are an enemy to any cyster out there.   So say good bye to it.    Mooooooove on.   


So what is this nonsense I hear about Myo-Inositol and Inositol?

Well ladies, it ain't nonsense.   Check out Angela's website.   She explains insulin resistance quite well:

"when we eat foods, mostly carbohydrates, they get converted into glucose in our blood stream. We need the glucose to enter our cells to be used for energy. When blood glucose levels rise, a signal (imagine a doorbell is rung) is sent from the cell door to the nucleus telling it to open up. However, with PCOS, the doorbell on the cell door may be defective. This means that it takes longer for the cells to open its doors to glucose resulting in higher amounts of insulin needing to be secreted. MYO, as a secondary messenger, acts to repair the doorbell so that the cell doors open in response to glucose, resulting in less insulin needing to be secreted."



"So.... I heard PCOS women should be gluten free.   Is that true or not?"

I straight up asked Angela this question.   To her face.  Because let's face it, it's tough being gluten free.  I personally have no choice in the matter.   Gluten and I became enemies after my pregnancy with Elliot.   I was told that Elliot would be my one and my only.   I was totally fine with that.   After having Elliot, my thyroid went bonkers and my simple case of hypothyroidism turned into "Hypersensitive Hashimoto's Autoimmune Hypothyroiditis" and I was urged to go gluten free.   When I found out I was pregnant with Nora, we weren't even trying to conceive.   We weren't preventing either, but we were told Elliot would be it for us.   The team I work with is absolutely convinced that being gluten free for those eighteen months boosted my fertility.    

But then.... when I was pregnant with Nora, I CRAVED it.   I gave in (I mean seriously, look how cute she is) and had it and had absolutely no side effects or consequences.   Mmmm bread, you addictive beast.   

However, when Nora was exactly 6 months and 2 days old, my doctor urged me to go off gluten again.  Your allergies change within the first 6 months following having a baby.   Perfect timing.    I was getting really embarrassing bloody noses and having joint issues.   Keep in mind, I have the double whammy.   Not only do I have the fun of PCOS, but I also have Hashimoto's.   There is LOTS of research indicating a need to be gluten free for Hashimoto's.... but not for PCOS.    Here's why ladies. MONEY.   THERE IS NO MONEY FOR THE RESEARCH.   IT COMES DOWN TO MONEY.  Angela said that while there is no direct research, it makes sense to be gluten free because eating gluten free means you're eating less inflammation inducing choices.    When you're eating clean, your body may just shock you and behave.   When you are eating gluten free, your insulin resistance is more controlled.   

With that said....

Later this week we are going to receive copies of the Power Points from the presentations so I may discuss this further, but seriously, if you have any questions --- reach out to me.   
    Friendleigh82 on twitter.  
Mamageib on instagram.

God bless the Hashtag.   I'm learning that Twitter may be the best option because you can make lists and search hashtags.   Feel free to find me on facebook as well.    There's a lot of information out there and if there's anything I can do to make your journey with PCOS a little less burdensome, I will do so.   It's no picnic.   I get it.  
























Weight Watchers Update

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