Newly diagnosed, overwhelmed, and terrified!

RunsWithSticks · 07-24-2008, 04:56 PM

Hi Ladies...

I was just diagnosed this week, much to my surprise. I went in to my doctor for hair loss, and finally after several referrals, appts, etc, ended up at the endocrinologist who diagnosed it pretty quickly.

I'm totally overwhelmed by everything... I'm supposed to go on a low-carb diet which is completely alien to me as a marathoner... no more than 15g at a snack and 45g at a meal... I can't actually EAT any of the food that is in my house! It'll help when I go grocery shopping and start paying attention, but it's frustrating and scary.

I haven't started any medication yet, she wanted to run a few additional tests just to be sure, but it sounds like metformin, yaz, and spiro-something -or-other for the hair loss.

I'm so scared that my hair won't grow back! I've spent the last 2 years growing it long, and now I have thin spots at my temples and the crown of my head. Trying to decide if I need to cut it to make those less obvious.

I'm trying to not even think about the fertility thing yet. My bf and I aren't try ing to conceive, so I'm trying to think about it 1 step at a time...

iluvmyairman · 07-24-2008, 08:38 PM

I think it's normal to feel scared. I know I did. Mostly because of the infertility part and because I didn't know much about PCOS, but I'm slowly but surely learning.
I wish I could offer up more info and support, but I'm still reeling from the news that I have it. All I can say is hang in there, and keep comin back here for support, because no one in the world understands your issues as well as those here I'm sure!

I will say this, Yaz is what made me take note of my issues. My doc thinks I've had PCOS for years, but it's been basically "dormant" due to me being on the pill for the last 15 years. When I got on yaz I developed all kinds of problems and finally got off of it 10 months ago, been struggling with various issues ever since, and now finally a diagnosis. But everyone has different issues with different meds. You may have no issues with the Yaz at all. Just an FYI for what it is worth from my perspective.

angelbgirl29 · 07-25-2008, 02:46 AM

hi! i am also new here, but not newly diagnosed. it can be scary, but you will find your way, i promise!

oh and i am a yaz person, and i have had nothing but success with it. the poster above is right, it will be different for everybody.

looking forward to sharing with you and getting to know you!

Eva37 · 07-25-2008, 11:53 AM

i felt really scared when i got dx as well. Thats why this site is amazing, theres so much to learn and everyone is so friendly. There is a link to the newbie roadmap in my siggie for you
eva

NPhillyCyster · 07-26-2008, 04:33 AM

I am also newly diagnosed and new to the site. Just 1 week ago I was also diagnosed and I am just as terrified as you are. The scariest part for me was getting my ultrasoud done and the doctor telling me that was uterus wall was very thick, if it were any thicker I could have gotten CANCER!! That scared me to death. A part of me was so happy to finally be diagnosed with something that finally gave me some answers to the questions that have been reeling in my head for years but another part of me was even more confused, terrified, angry, and just sad and devastated. Especially the whole fertility issue. My friends call me Momma for goodness sake, how could I possibly not be able to have children. I am trying to stay focused on the positive though. It could have been much worse (cancer) and this website is heaven sent. I still have little spurts of depression about it here and there. I'm not on any medication as of yet besides Provera to help thin out my uterus and not to mention that I have to find a new doctor because the one I go to now won't be accepting my insurance anymore. But from one newly diagnosed cyster to the other hang in there and focus on the good that has come from finally knowing and treating your symptoms. I'll be praying for all of us.

wannabub · 07-26-2008, 09:17 AM

I'm new too. It is scary isn't it, good to know we are not alone though. Thank goodness for the internet! All the best.

iluvmyairman · 07-26-2008, 12:38 PM

It is a good feeling to know that none of us are alone. I never knew too much about PCOS, although I did know a couple people that had it, I never realized how many people actually did have it! Wow! There are so many of us, we could take over the world. lol

NPhillyCyster · 07-28-2008, 03:20 AM

Before I found this site, the research that I was doing on PCOS was giving me mixed signals about how common it was. Even talking to the doctors, they were telling me that it was rare. I have to say that this website has totally opened my eyes and made me so much more aware of the fact that PCOS is pretty common and it is the doctors that need to play catch up on it. The scary thing about it is that there are so many women that are walking around with PCOS that have no clue that they have it. They really need to become aware of it because this disease is a dangerous one that could potentially lead to some serious health problems if not handled in a timely manner. My doctor told me that if I hadn't come in for it when I did I could be trying to fight cancer right now. It's scary and the previous poster said that there are so many of us, we could take over the world. I agree but to add to that, because there are so many of us, we need to educate the world.

waiting4#2 · 07-28-2008, 04:00 AM

It is scary! But finding others who share the same problems can be really helpful. I have lived with it for a while and at times I almost forget about it so don't worry! Your dr will help you get everything under control. I tend to have the hair issues in spurts. At times I feel like I am losing all of my hair and other times like I am sprouting it! I am new here also but there seems to be lots of great info here.