My PCOS Advocacy Letter

If you don't already know, today I spoke with a representative from my Congressional District office. Well..it was a rep for the rep. She was very nice, asked a few questions, one of which was 'do you have kids now?' I'll give you my answer at the end of my post. Later this week I will talk about some of the facts I learned that really made an impact on my health, but today...I would like to, with great humility tell you my story about PCOS & my life. Here is the document I submitted to my representatives office, although...I did do some minor edits to this version. AKA punctuation.

My story started with my general family doctor about 7 years ago. When my husband and I begin our
family planing I had heard losing weight would help with being able to become pregnant. Throughout
my teens years and early adulthood I struggled with my weight, irregular cycles, and acne but knew I
would need to lose some of the weight to help with conception. However, I remember feeling different
than my classmates and peers or, that something might be wrong with me, because it seemed all of
my friends had monthly periods, and I did not.
After speaking with my general practice doctor, I had lost about 20 pounds by myself and advised that
I was having a period every two weeks. His response was ‘your body is still trying to adjust due to the
weight loss.’ I also asked his colleague what I could do to continue to lose weight and she stated,
trying cutting a few calories at your dinnertime meal by not eating cheese.’


After a year of not being able to get pregnant, we sought out a hormone specialist who primarily dealt
with thyroid issues. It was helpful in being diagnosed with hypothyroidism, it explained some of my
tiredness and lack of being able to lose weight even though I was on a 1,200 calorie diet and working
out consistently. I lost maybe another 20 pounds during this year.


We tired that for a year, which brings us to finally seeking professional help from a reproductive
endocrinologist. After explaining my symptoms within the first visit I was diagnosed with PCOS.
I was immediately put on metformin and a low carb diet. I went on to lose 40 pounds.
I felt great finally having a reason for my symptoms, but physically I was miserable.
The metformin gave me a very upset stomach and I was still very much struggling with acne.
The emotional turmoil was starting to take its toll as my anxiety also started to worsen.
Unfortunately my husband and I were diagnosed with dual diagnoses and that is when we decided to
take a year off from actively trying to conceive.


During this time I was doing research on how to better treat my day to day PCOS symptoms,
not just my lack of fertility. I would call my RE (reproductive endocrinologist) to verify  any information
I discovered to find out if the reports I was reading were solid information and if it is something I should
be doing. While some statement that were given were helpful such as ‘if the avoiding those foods
makes you feel better then that’s great!’ others were not. I did my own extensive research on a
supplement called inositol. My RE’s response was to not mess with her plan of care even though I had
presented the research to her.


During that year I also started to see a mental health professional who was able to help me with my
emotions and feelings as we navigated the world of infertility.  I also sought the help of a dermatologist,
which did little to help to my acne issues as I was still dealing with hormonal acne. Lastly, another out
of pocket expense was spent on seeing a nutritionist who specializes in treating women with PCOS to
help balance hormones with food.  
Months of research on my own pouring through PCOS DIVA, PCOS Diet Support, all of which were not
given to me as resources, but that I had to seek out on my own, I learned that with PCOS, you should
stay away from dairy as well as peanut butter to avoid the cystic acne that I was dealing with.

I later discovered before we attempted our first IUI cycle (intrauterine insemination) that I could not be
on the medicine the dermatologist recommended. I immediately had to stop taking the medication.
Which also came with it’s own nasty side effects. I sought help from an esthetician friend who worked
with me using light therapy. It helped but didn’t completely go away. I tried all sorts of products before finding something that FINALLY worked for me! At great cost to the pocket book.

Since being diagnosed with PCOS I have learned to become my own health advocate, that even
though it may be scary to ask questions but that I should continue to seek out the best
treatments to help manage my syndrome, I also learned that I have a voice I can use for change and
to help others.

(This picture was not included in the letter.)

This is why I am asking Representative office to consider co-signing and sponsoring the PCOS caucus.
So that the other 30,000 + women in district one, like myself, can be able to seek out the assistance
we desperately need for better research into the comorbidites that affect those of us who battle PCOS
every day. I am asking today on behalf of all women who suffer from PCOS that more research be
conducted, from more than just one committee, of the NIH to help with early detection and intervention,
especially for young girls/adolescents, as this will be key in helping avoid in further complications they
may encounter later in life. As a representative from PCOS challenge we are also asking for
Representative office to make a floor statement on how PCOS affects not just women, but families.
From civilians, to service women, to parents of daughters with PCOS, spouses of women dealing with
PCOS.
Lastly, if we could ask that you reach out to any contacts on the Appropriations Committee to consider
the addition of report language that reflects the importance of the National Institutes of Health engaging
in trans-NIH research of polycystic ovarian syndrome. We believe that due to the complexity of PCOS,
which has implications across NIH Institute disciplines, the Committee should direct the Office of the
Director to create an action plan to empower Institutes across NIH to proactively support and fund
PCOS research.
Thank you for your time and consideration.

Respectfully,
A (I of course wrote my full name. I also left off my district reps name as well.)

The aide to his office that I met with, was lovely. Thus far she stated she will follow up with the representative and then give me a call back on what they decide and discuss. I asked if she had any questions for me, and she did ask 'So do you have kids now?' I suppose I left that end of my story open ended for her as I did talk about our experience with IUI but not the results.
I politely sad "No, but I do have one very fat old bulldog, who is basically my kids."
I'm sure at some point Ms. B will ask me to stop calling her old and fat.

Comments