DMVM

I was diagnosed with PCOS in 2006, I have been sufferring with pretty severe headaches inbetween my eyes since December. I went to a Neurologist today and she thinks it's possible that I either have a Pituitary Tumor or High Intercranial Pressure. She is sending me for blood work and an MRI. But she told me she thinks I need a Spinal Tap too. Has anyone ever heard of increased fluid in the brain from PCOS causing pressure and headaches? This doctor seems to think they are related. I haven't come across this in my limited PCOS research.

Thanks
danielle

~copacabana~

Hi Corvidae! How long have you been in England?! I am very excited to finally have an answer to my health problems. They think I have PCOS too, so I will have to deal with that after surgery, but the chance of a cure with Cushing's is fairly good. I have quite a large tumor for being 18, so that makes me a little worried, but I have a few great Neurosurgeons in mind. lol, no pun intended! I hope your testing will help you out! The waiting game can just go on and on. Good luck, and keep me posted
DMVM- what tests are they doing for your mom?! How old is she? Keep me posted on your mother's testing. There is familial Cushing's, it's rare, but it's very possible. THe increased cranial pressure I haven't read in connection with PCOS, it has been connected with Cushing's however. Did they mention Pseudo-tumor cerebri? That's why they would want a spinal tap, they want to do that for me but they can't do it now. A pit tumor is likely with the headaches and I'm glad they're looking into it. Let me know how it goes~

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~NICOLE~

PCOS dx 2006
Cyclical Cushing's Disease 2008

Pituitary surgery May 21, 2008- finally, the tumor is coming out!!!

Erica Hidvegi

Thanks pattyannruss! I also discovered through researching my maternal family gynecological health & history that lack of Progesterone also runs right along with etsrogen fluctuations causing corpus luteum (usually functional but in my case exceeding 2.5 inches and restricting the uterine artery, lower bowel passage and ovary itself) cysts to develop if the body thinks its pregnant and it really is not.

Hormones are very unusual, very inconsistent when whacked out by environs, stress, DNA, and even the occasional missed period. But as a youngster, naive to the ways of the way a womens body truly works, I allowed birth control pills in the system and now pay a dear price for their removal--nearly 17 tyears later.
Anyway, I will remove myself from this soapbox I stand on acting as if I have the key to beating this darn cyst. I use my options, none of them surgically invasive but nevertheless excruciating and painful.

No pain no gain . . .

SuzanneStar

Thankyou so much for the information on Cushings i am currently being tested for this again after 8 years.

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tiggerlily5278

I recently switched RE's and my new doc had me go for bloodwork for DHA Sulfate test. He told me that PCOS is sometimes misdiagnosed, and it is actually Cushings. I'm waiting for the blood work results to come in yet. One of my concerns though is, it seems he is indicating that it would be one or the other. I know that I've read on this board on other threads as well, that you can have PCOS & Cushings. Has anyone else had this blood test done for Cushings? This would be my first test in general for Cushings. I'm a little confused.

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Carrie
29 y.o., Diagnosed with PCOS in Aug '05, but currently testing for Cushings at Johns Hopkins.

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brightnsunny

thanks 4 sharing

kiwibaitnz

Hi all, I am 36 and was diagnosed with PCOS at age 16 after only ever having had a few periods. That was basically where my diagnosis started and ended. any health problem has always been put down to PCOS related.....lose weight, eat better you know the story. Over the years have had 2 children from doing laser treatment on the ovaries. Have not a single period in over 4 years. Diagnosed with hashimotos in 2003. I take Met, thyroxine and Wellbutrin. I want to be tested for Cushings after everything I have read here. I have had the hump for years, started having acne on the jawline chest and back, vision rapidly deteriorating, dizziness, weight gain in the abdomen while my wrists and hands have got slimmer....stretchmarks, well got some during pregnancy anyway. I ache constantly and have no energy, no sex drive. The tests I have had show high testosterone, high DHEA...more than what is typical for PCOS. My LHFSH ratio was always good. My problem is, do I wait for 2 months until I return to New Zealand to get my tests paid for or pay out of pocket here in the USA. anyone have any idea how much a 24 hr urine cortisol test costs? Is it best to be off Met etc so as to get a more accurate test? I think the not knowing but suspecting it is making me a little crazy!!!
Tracy

Aymen

http://www.netdoctor.co.uk/diseases/facts/conns.htm

It says one in a million people have it, but I had it and had to have my adrenal gland removed in 2004. I wish I was that lucky (1 in million) with the lotto. Haha

Symptoms can be:

high blood pressure
low potassium
going to the bathroom a lot, especially at night
fatigue

It's worth getting tested for this if you went from normal or low blood pressure to extremely high blood pressure. If I wouldn't have been diagnosed with this, I would have had to take blood pressure meds for the rest of my life. After my surgery, my blood pressure went back to normal.

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Ernest (EJ)
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Aymen
TTC since 04/2004

AshleysMom1

Celiac disease is another diagnosis that can seem similar to pcos and wreck havoc on hormones.

http://www.celiac.com/index.html

symptoms are but not limited to-
Abdominal cramps, gas and bloating
• Diarrhea
• Fatigue or general weakness
• Foul-smelling or grayish stools that are often fatty or oily
• Osteoporosis
• Stunted growth in children
• Weight loss or weight gain
• Anemia
• Easy bruising
• Fluid retention
• Infertility
miscarriages
• Muscle weakness
• Peripheral neuropathy (nerve damage)
muscle cramps
achey joints
brain fog
dermatitis herpetiformis

Treatment- Gluten free diet for life

Orsolya

Hi!
I'm a hungarian PCOS girl, too. I started menses at age 9, and never regular cycles. I went so many doctor and they didn't help me. I had knonw that i have a PCO by ultrasound and I will heavy the pregnant.

Now I'm 28 years old got to a new doctor, he is a internits. He assings a cupping. My result: LH: 4,3 U/l, FSH: 5 U/l, Prolaktion: 589 mU/l, Ostradion: 143,4 pmol/l, Progesteron: 2,1 nmol/l, Testosteron: 3,4 nmol/l, Sugar: 3,96 - 5,76 nmol/l, IR:9,94 - 185,5 mU/l. They are very wrong rate.

My doctor noted down Metformint (500 g a day, then 1500 g a day) and i have lose my weigt: I have to deit!

6 months waitng for a new baby project. Until I have a rest!

Orsolya

Hi Erica!

Are you a Hungarian girl? I know that your name is hugarian sound. Where dou you live?
Are you PCOs, too? Have you drpo the metformin?

Orsi

geneva10

Hi ladies,

I am in the process of being tested for Cushings. I am pretty scared after reading about Cushings online - it seems like such a nightmare of a disease. I have done the 24hr Urine test, and had high levels of cortisol. I am taking Dexamethasone tonight at 11pm and then getting my blood drawn tomorrow at 8am.

Does anyone have any advice/experience with Cushings and the whole diagnosis and treatment process? I would love to hear from you.

Thanks,
Geneva

abba

How about another...doesn't hyperthyroidism cause fertility problems too?

lush

Ok so much to take in here. Im only 20 and didnt realise there could be so much more that COULD be wrong with me but im sure i havent.

Although i have had suddenly been getting headaches all the time (sometimes lasts all day or days on end) and worried it could be more seeing as i never used to get headaches.

But DR havent test me (i think they think im making it all up) I really cant deal with all these pains.

Thanks for this thread and keep posting people. Im just all confused about all this. x

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Scribbs

Hi Everyone! I have PCOS and Hypothyroidism.... I am currently on Metformin(2months) I have never had periods on my own...I have to take provera. My husband and I decided that we want to have a baby. I know it's probably going to be a tough road ahead....if you could offer any advice I would appreciate it. Also, just wondering if any of you on Metformin found that they had a hair-loss problem. I am losing alot of hair on my head. I thought it was suppose to help. Any advice would be great, thanks! ...and best wishes to all of you!