i guess i am now TOTALLY a soul cyster

[prunepie]

hi everyone.

i have been a member for years now. i have always considered myself a cyster, bc based on my ir and blood tests, pcos was the closest thing i could relate to.

i had an ultrasound YEARS ago and i didnt have any cysts..and iwas told i couldnt have pcos bc of that.
but i kept looking for some answers and was dxd with ir and wacky adrogens, but never offically told pcos. it was kinda like you have dysmetabolic syndrome like pcos.

well gee whatever!! lol

i finally got insurance and i had an ultrasound thsi past week of my ovaries bc i ahve been having pain down there..and i saw the screen showing my ovaries are covered in cysts.

i was laying on the table and i got tears in my eyes.

its like the FINAL FINAL thing that made me feel...no jenn you arent crazy calling yourself a cyster. you really do have it.

i have always said to people on here..i am a cyster with no cysts. but i guess i am now a typical cyster, cept for the fact that i still get periods.

i am going for a cat scan on tuesday bc the doc wants a better pic of my ovaries and wants to check my pancreas,,bc my ir is still at 26 and not moving on glucophage at all over the past few years.


i feel fortunate to have found docs recently who know what the heck they are doing. i just wish i could have found them years ago.

i have been fighting for help actively for about 7 years now, getting bits and pieces of the puzzle here and there.

i have often questioned myself and and thought hey jenn maybe you are TRYING to find something that isnt there, to explain away the fat and fatigue and hair and acne.


i have now been dx with pcos, hypothyroidism, migraine variants, ... not to mention bad eczema and tendonitis.

i am 29 going on 30.

i am SO scared that i am just like my mother. she died young due to health problems being overweight and diabetic.

unlike her i am actively seeing docs and i have a dx, where as i think she was undxd pcos back in the day.

but here is the kicker...isnt finding answers and getting treatment supposed to help??? it doesnt seem like it is..like okay i at least know what is wrong we me ...but even with meds and diet it doesnt seem to make a difference.

i TRY to be upbeat on here and its not like i am giving up..i just feel overwhelmed with doc appointments and constantly getting bad news.


just thought i would share on here..

just trying to make it through tuesday bc i am SOOOOOOOOOOOO scared of getting a cat scan with contrast...bc i have to fast for it and do the contrast. i did a contrast ct once for my sinuses and puked all over the place when they did the injection!! eeks!

thanks for listening

xo jenn

[MommyJenny74]

I'm glad you have a diagnosis finally (even though it should've been a long time ago). Hopefully the docs you have now will help.
I have had some PCOS symptoms since puberty, but I was not diagnosed until 2003 (age 28). I didn't start the really bad PCOS stuff until about a year before I was diagnosed. (And I'll admit for the majority of that year I gave in to my doctor fear and just didn't go in to find out what was going on ). I saw a gyn and endo and they were no help. I found a family doctor who gave me met despite the fact that I hadn't had an ultrasound yet and most of my bloodtests were OK. My syptoms were: long heavy periods (up to 6 weeks long) which then only came every couple of months, AN, thinning hair, overweight (mostly in the belly). I did have an ultrasound which showed cysts, a little later. But that was only to confirm the source of my pelvic pain, my doc firmly believes that a woman can have PCOS with no cysts.
I was able to lose a lot of weight on met, with diet and exercise. Then I got pregnant! The perinatologist who took care of my pregnancy made me quit the met. Now my daughter is 6 months old, and my family doc (the one who diagnosed me) put me back on the met as soon as I was done breastfeeding. I am really struggling to lose the weight again! It seems like everything I did before doesn't help now! Frustrating!
I hope your test goes well. I'm glad you shared with us. It's great to try to be upbeat, but sometimes I think you have to allow yourself some "down" days too. I find it very comforting that the cysters here understand!
Sorry so long, let me know if I can help.

[Rosie1028]

Jen,
I had a CT scan last summer with contrast and it wasn't bad at all. Did he tell you to quit the glucophage 24 hours before and to not restart until 48 hours after the procedure??

It is a weird sensation when the contrast starts going in, you feel kind of warm. I was so nervous and I did great. Let me know how it goes!

[TickledPink]

I too am a cyster who as of my last u/s has no cysts. But like my doc said we can't tell you, you have anything different because you don't! For all I know I have cysts now.

I guess it probably in some sort of way puts your wondering mind to rest????


good luck with the ct you will be just fine

[hoping4help]

(((jenn))) My thoughts will be with you on Tuesday. I've had many a CT and the barium is nasty, but ask if you can get a flavored one, and the CT will be over quicker than you now-and hopefully you'll have more answers! So sorry to hear that the cysts reared their ugly head on the u/s. You'll be ok. Be thankful you have the insurance I am so there with you and the tears. It takes a toll--all these diagnostic tests, I understand.
Think tears of joy, and relief, knowing that you're not crazy! YAY!
You are fortunate to have found docs recently who are taking a genuine interest in helping you, it sounds. Think, better now than 10 more years of heartache and frustration. I've questioned myself many times and PCOS has caused me many ruined pillows drenched with tears, you're not alone at all hon. We know our bodies best, to find a physician that is willing to listen and help, is a bit tougher sometimes. I hope you start to take care of yourself, due to your mother, and you're already making strides in PCOS for your treatment YAY!
We all can't always be upbeat so many cysters going through a lot, it's surreal. Hang on, and know my wishes and nothing but the best for you are being sent your way.
(((gentlehug)))
Let us know what the CT shows when you're able.
We're never giving up right?!

[prunepie]

thank you all for posting back!!!

i am soo nervous bout tomorrow!!!

the did tell me to stop the gluc befoer and after the test... i am so worried about getting bad low blood sugar cause i have to fast for the ct scan..when my sugar drops i get panicky eeegads!!!

i will let you all know how it goes!!!

thank you for your words of support!
xo jenn

[Rosie1028]

Jenn,
I will be thinking of you tomorrow. I have kind of a funny story. I just had my nipples pierced about a month before the surgery and for the Ct scan you have to remove all jewlery. I asked them about the nipple rings and they said don't worry, you can leave them in, they should be fine. I was freaked out that my nipples were going to start sparking when I was in the tube.

Also something else is that when you have your first bowel movement don't be surprised when it is all white. It kind of looks like little icebergs!

I was also freaked out about the low blood sugar episode. Make sure you eat a good dinner tonight. I did fine and so will you.


Good luck!

[hoping4help]

Try to maybe take a hot bubble bath, light some candles, and pray tonight jenn. R e l a x....I will say a prayer for you tonight~ you're on my list The sooner you get it done, you'll feel so muchbetter, and am so praying you get the answers and treatment you long for, AND have been working on.

Luv ya!
Kristen

[MommyJenny74]

Jenn I too will say prayers for you tonight! I've never had the contrast, but I know that awful dread before an appointment!

Rosie I love the nipple ring story! Very funny!

[cyster christy]

JENN
I hope you are doing well today. Please update us. Our prayers are w/you
CHRISTY

[prunepie]

thanks everyone~~~

i survived!!!

but i started a migraine last night and into today so honestly thoguht i was gonna die!!

but barium was horrid but i didnt have a panic attack or vomiting during the scan thank god!!!

i am getting the results next tuesday at the drs office.

teehee i had my nipples pierced too along with other things lol
they are out now...but i totally get what you mean about being afraid you would light the nips on fire rflmao!!

everyone thanks so much. i have honestly been feeling SO down lately...i appreciate the kind words and prayers xo jenn

[hoping4help]

WooooHoooo YAY!!
So glad to hear ya survived it! I bet you're worn out. I'm super dooper glad to hear this jenn ((((bighug))))
Let us know about the result when ya get them please?

Keep yer chin up jenn.

[prunepie]

whoohooo teehee thanks kristen!!!!! i AM pooped for sure...time for ice cream lol xo jenn

[hoping4help]

*kristen sends jenn's fav ice cream over to her*

BUT-no brain freeze--ya already got a migraine, or hopefullly that's subsided...

[MommyJenny74]

Yay, what a relief to have it over, huh? I'm so glad for you.
Do let us know what you find out. Enjoy the ice cream, you've earned it!