Tuesday, April 19, 2016

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....


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?    

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  

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.


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.

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