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PCOS (Poly Cystic Ovary Syndrome) Roll Call

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

I've been noticing lately that we've had several ladies with PCOS including myself. PCOS puts us at risk due our insulin leves. For those of you with PCOS, there is a website. I'll have to look it up.

With my diagnosis, I tried to find information between uterine cancer and PCOS and there wasn't a lot out there. Maybe we need to bring this up since many women are not even aware of PCOS and the symptoms. With PCOS we all have different levels of symptoms and many are unable to have children. Luckily I have 2 grown children.

PCOS is very frustrating because most doctors overlook it. It took me over 20 years to get diagnosed. I even had one gyn tell me that I had to accept being heavy and that nothing was wrong. At that point I was in my 20's and did not have a period for 3 months and not pregnant. I told him that he was a quack and walked out of his office. Maybe if I was treated appropriately I would not be in this situation. Like many PCOS women I did every diet out there and still could not lose weight. Also a high risk factor for cancer.

But now that this can also be linked to cancer we need to speak out.

If you have PCOS, please respond so we know how many may be out there.

Susie (Lilly the Clown)

Caradavin
Posts: 23
Joined: Jan 2010

I was diagnosed at 19. Diagnosed with type 2 diabetes at 31. The gyno said that I was high risk due to the PCOS, and I had no idea. Sure enough, at 33, he diagnosed me with endo cancer.

akunzel's picture
akunzel
Posts: 13
Joined: Dec 2009

I was told I have PCOS about a decade ago. What I find frustrating is that once that diagnosis was made, they attributed every single symptom I ever had to it. My surgeon found extensive endometriosis with multiple adhesions throughout my abdomen. Despite my direct questions about the possibility of endo, I was always told my symptoms were normal for PCOS and to just try to lose more weight. Don't you love that catchall? Just lose more weight ;-)

Caradavin
Posts: 23
Joined: Jan 2010

I agree. I've had many things attributed to it since. Luckily (?), I was diagnosed with endometriosis the same time as the PCOS.

daffygirl
Posts: 6
Joined: Jan 2010

I found out almost 30 years ago that I had PCOS and all my gyne issues were ignored because of it. Was told if I could lose some weight it would help but I better not try and have children. Heck, I hardly had periods. One doctor went as far to tell me to call him immediately when I have intercourse in case I would get pregnant. I was in my mid 20's and ever since I got my period (age 16) I had nothing but pelvic pain 3 wks out of the 4.
So many ultrasounds just to confirm that I had ovarian cysts, but was always told not to worry!
It's easy for the doctors to tell you that, the female ones were even worse with their attitude. Losing weight while having PCOS is a joke, I can't begin to tell you how many diets including all the fad ones I was on but it never helped. It's very frustrating.
Good luck to all.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I was diagnosed with hypoglycemia (low blood sugar) when I was in my early 30's. I understand that it can cause PCOS and I had all the symptoms of it. I never had regular periods but had noooooooooo problem getting pregnant!

Zupo's picture
Zupo
Posts: 7
Joined: Jan 2010

Hi, I was diagnosed with PCOS in my early 20's. Due to a chronic heart condition I was not able to use birth control pills/hormone therapy to have regular periods. Im 46 now. I didnt have a period from the age of 21 to the present. At age 45, I was diagnosed with endometrial cancer; There is a very good reason to have a period at least 4 times a year; its to shed the top endometrial linning. Not having a period for all these years put me at a very high risk for my cancer. Add my obesity ,which is caused by PCOS. I beleive there is a direct link between PCOS and endometrial cancer. It was only in 1999-2000 that a treatment was started for PCOS pts ( for thoses who wanted to get pregnent) Folic acid 1mg daily and Metformin 500mg twice a day. This tx does not fix your lac of periods. We have a long way to go for research. I was never informed of the risks of cancer and not having periods. I asked Dr's was there any problems with not having a period. I was only given the choice of hormone tx. Since Im high risk for blood clots i was between a rock and a hard place and not given other options.

Akita Lover's picture
Akita Lover
Posts: 14
Joined: Feb 2010

I have always had irregular periods, but didn't find out I had PCOS until 1998. I had a D&C on Thursday and Dr. called Friday to say I had multiple polyps that are cancerous. I am freaking out....so glad to find this site....

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Welcome to the group...sorry you need to be here :(

We are here to support and share....please let us know how you are progressing.

Sending thoughts and prayers your way...

Laurie

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