Re: New to PCOS and scared
From: Debbie (anonymous@obgyn.net)
Mon, 4 Jun 2001 17:34:31 -0500 (CDT)
Robin- I am now 32 and I was diagnosed a little over a year ago. Let me
tell you, what you are feeling is completely how I felt. I cried for
weeks. I was told also, that someone in my family must have had this
disease somewhere along the line. Most likely they didn't even know
they had it, so there is no way of knowing who we get it from in some
cases.
My husband and I had been trying to have a second child for 7 years to
no avail. I was gaining weight at a rapid pace and just didn't feel
myself. The OBGYN that delivered my first son (which was also a
miracle) told me that there was nothing wrong with me except I was fat.
I had gained 70 pounds over a 4 year period and hadn't changed eating or
exercise patterns and he didn't see anything wrong with this. This
infuriated me so I went on the search for a doctor that would help. I
found a practice that I liked and they started me on a series of
fertility treatments. I finally gave up after 2 years. We were
financially and emotionally finished with this. I couldn't take
anymore. People were having babies all around me and I couldn't handle
the pain not to mention I was getting fatter and felt so unattractive!
Anyway my mother happened to be reading a magazine last winter and found
an article on PCOS. It was like reading my life story. I took the
article to my doctor and she said that she had suspected it, but that
some of the tests she did came back fine so she went looking for another
solution. She finally sent me to a Fertility Center and the doctor was
ranked 3rd in the nation for this field. Better yet, he specialized in
treating this disease. Another name for what we have is "STEIN
LEVANTHAL SYNDROME". Not only was I infertile, but I also had the
excess hair all over my body, acne, no mensies, several cysts on my
ovaries, dark patches of skin, and severe insulin resistence. It's not
a pretty thing at all. I'm not sure what my insulin levels were, but it
explained a lot of the days that I just couldn't get out of bed. I was
put on Metformin and became very sick so they switched me to Avandia,
which is much better. I am currently trying to adjust my diet to low
carbs to control the weight. I was diagnosed in April of 2000 and opted
to have Ovarian Needle Diathermy surgery in June 2000 to increase
fertility by cleaning out my ovaries and getting rid of the cysts. They
found some endometriosus (spelling) also. Happy to report that after 7
years of heartache and illness, I became pregnant in August 2000 Thanks
to the surgery and Dr. Craig, I just gave birth to a beautiful baby
boy! The really neat thing is while I was pregnant, I lost 23 lbs! The
doctor said because my ovaries stopped working, my insulin stayed lower
and the hormones were controlled.
I know my response is long, but I just wanted you to know that there are
a lot of us out there going through the same thing so don't be scared.
It really will be okay. As long as you take the proper steps and follow
your doctors advice, you will live a normal happy life. I am feeling so
much better now that I am aware of it's existence. The key is to find a
doctor that has extensive knowledge of this disease. If they don't know
about it, they treat you like you are crazy! It feels good to tell my
story. Thanks to anyone including Robin for listening. Debbie
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
>
>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 :)
![[ PCOS Discussion Forums ]](../../images/pcos_at_obgyn.gif)