Re: New to PCOS and scared
From: Rivero (anonymous@obgyn.net)
Wed, 13 Jun 2001 14:09:09 -0700 (PDT)
HI Robin--
I am 29 years old and was diagnosed almost 10 years
ago. I gained almost 85 pounds in a little under a
year back then and I am still struggling to get it
off. (If anyone out there can help with getting the
weight off, I would appreciate any info).
I can tell you from my experience that you need to do
as much research as you can on PCOS so that when you
visit with your doctors you are informed about your
health. For a long time I followed doctors orders
without asking questions and getting nowhere. Now when
I visit I make sure I ask questions about my lab
results and talk to him about the latest treatments
out there.
As for some of your fears, let me see if I can help
soothe them....because I went so long without being
diagnosed I had such a high level of testerone in my
system that I began to lose my hair and get facial
hair under my chin. I never lost my hair completely
but I had to get creative with hairstyles and I have
finally met a stylist who works wonders on hiding the
"bald spot" as I call it. I also decided to get waxing
done ever 2-4 weeks or so depending on how much hair
growth I got under my chin. It's not a full beard,
more like patches of hair under my chin.
I was also told that it could be hereditary but NOONE
in my family has had any of these symptoms, only me.
My doctors did tell me that I was almost infertile ( I
was in the 5% category) when I was diagnosed almost 10
years ago, but with new medicines and trials that are
out, I may have a chance to have children some day.
Since I am not married that isn't my main concern
right now. You've been blessed to have children.
Feel free to email anytime you want, to ask questions
or just for support. I may have been diagnosed 10
years ago, but I just recently found this webiste and
I also hope to get support too. It can be a very
lonely disease. Not many people understand what this
feels like because it's not something that is "common
or life-threatening"--like cancer, even though it can
feel as traumatic to you. Allow yourself to feel what
you feel, but know you are not alone.
Hope this helped! Take Care- Dania
--- Teresa <anonymous@obgyn.net> wrote:
> At Thu, 31 May 2001, Melissa wrote:
> >
> >At Thu, 31 May 2001, Robin wrote:
> >>
> >>Hello everyone.I've just been told I have pcos and
> I'm very scared.
> >>I'm 34 and will not be having any more childern so
> that is not my
> >>problem.
> >>i'm like 50 lbs over weight and fight to lose
> weight all the time.
> >>Here r some questions I have, if anyone can help
> please do. I'm so
> >>devastaed over this.1. what is the hair growth
> like and does everyone
> >>get it?
> >>2.my insulin isat 90. and i was told that is good
> so am i still at a
> >>higher risk to gain weight? 3. does the
> medication like birth control
> >>make you gain also? 4. I also heard that you not
> only grow hair on your
> >>face but MAY get male pattern baldness. 5Iwomen
> younger than I 34...
> >>got this? the doc. said someone in my family had
> to have this also but
> >>no one does..can I be the first and pass this done
> to my daughter? I
> >>don't have any acne,should I be expecting that
> also to come my way? I
> >>hope someone out there can answer thesequestions
> my doc. just shrugs
> >>this off saying I'm lucky to have children
> already.
> >>Sorry for rambling on like this but I'm going on 2
> hours sleep. I'm
> >>just sick over this...
> >>Thanks so much everyone,
> >> Robin
> >Hey, Robin--
> I am in the same boat as you, I am 29 and was
> diagnosed two weeks ago. I
> am in the process of getting in touch with the right
> doctors and know
> nothing about treatment. I've read a great deal
> about insulin and my
> mother suffers from Type II diabetes and has never
> been diagnosed but
> has the same symptoms. I just want to qualify
> several things that you
> are saying. I was scared at first and my doctor was
> a total jerk about
> it. He told me I would gain more weight and
> eventually have to shave my
> entire face if I didn't get back on birth control
> pills. I am 29,
> married, and definitely want to have children. Even
> as I write this I
> think of the horror stories that I've read in the
> last couple of days.
> We are women and we desire to be sexy and not bald.
> I feel better
> knowing what it is. I didn't know why my hair broke
> of all of a sudden
> and I started having these symptons in 1995. I was
> getting yearly paps
> that checked out fine. Now all of a sudden I have
> what my doctor calls
> a disease not syndrone. What do I do? I pray and
> God has opened so many
> doors to understanding what this is. No, I don't
> want it and ask the
> question why me? All I hear in response is why not
> you? Please k.i.t and
> lets keep each other encouraged. What did your
> doctor tell you to do?
> It is a blessing that you have children already. I
> am still believing
> God for mine...Teresa
> >Robin,
> >I don't know if I can answer all you questions as I
> am just starting out
> >with this myself. I was just technically diagnosed
> with PCOS lately. I
> >am 26, my sister 24 has it and my Mom 46 has it.
> My sister just had a
> >large cyst removed last month which was causing her
> a good amount of
> >pain, she also has the facial hair problem and
> weight gain. She has
> >begun med to help with all of them and the dr says
> she should be feeling
> >better soon. My mom has a more sever case. She
> has the weight problem,
> >hair, and she has lost a great deal of the hair
> from the hairline above
> >the brow back to the crown of her head. I have
> some thinning of the
> >hair, some unwated hair in places it shouldn't be
> and a little bit of a
> >weight problem. I did however lose over 100lbs
> when I was in college. I
> >don't know if it was just because I was so focused
> on losing it or b/c
> >my PCOS wasn't as advanced. I have gained about
> 20-30lbs back since
> >I've gotten married but my job is also very
> different and I'm not as
> >active.
> >As you can see there is varying degrees in my own
> family. I do believe
> >that is is something that can be passed on to
> offspring(don't quote me
> >on that). I don't really have an acne problem...I
> still get one or two
> >around the time of my peroid but I don't think that
> has anything to do
> >with the PCOS. Everyone has different side
> effects...some people have
> >them all and others one or two. You can still
> carry on a normal life.
> >And you have one less thing to worry about since
> you already have your
> >kids...I'm just beginning that journey and the crap
> is making it harder.
> >I would advise you find yourself another dr who
> doesn't shrug off you
> >concerns and questions. An educated and concered
> dr will listen and
> >help you find the best treatment for you! My Mom
> and sister both see
> >endocrinologist and I see a fertility specialist
> who is in practice with
> >an reproductive endocrinologist.
> >Don't let it scare you, I won't tell you not to cry
> a little(well, even
> >a lot for a while) but you can't let it take you
> down. You are no
> >different a person than you were before you found
> out. We just have a
> >few hurdles to jump every now and then. The most
> important thing to do
> >is to understand how it affects you and not listen
> so much to what has
> >happened to others. It may never happen to you.
> I'm not saying that
> >it's not good to be informed about the
> possiblilites but don't worry
> >about them until they happen and then attack!
> >
> >I hope this has helped some, I'm still learning
> myself...I don't know
> >anything about the whole insulin levels, maybe
> someone else can be more
> >helpful in that area :)
> >I wish you good luck and hope you can start to feel
> a little better
> >soon!!
> >Keep us posted!!!
> >Melissa :)
>
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