[thinchickie]

Hi, everyone. I am back under a new name, but have been around a few years. I have PCOS and was diagnosed about ten years ago. I have been on Metformin since 2003.

I took myself off the metformin because it was making me sick. Well, in July I nearly hemorrhaged to death. I thought it was a heavy period at first, since I hadn't had one in years. This is normal for me. They had me on birth control pills.

Well, it turned out it was cancer. I had lost half the blood in my body and it was a horrible horrible ordeal. In August I had to get a hysterectomy, due to the endometrial cancer.

After I was first diagnosed years ago, one of the things I had read, was it could lead to endo/ cancer. This is an estrogen fed cancer, hence being fat, produces way too much estrogen.

Well, talking with my oncologist last week, he told me that the PCOS, and insulin resistance also causes an increased chance of endometrial cancer. So, he stressed keeping my metformin going and keeping all that in order.

I now feel like I really brought this cancer on myself, by one, not losing weight and getting better control of the PCOS and then by not taking my metformin. I have guilt now, but am so happy I lived through the cancer that I am still just dealing with it now.

I am back on the boards now for support and a place to share. My husband who was great through the whole thing, is now sick of hearing me talk about it. I can tell. But I am not over it mentally. I have to pull this together and get healthy.

My oncologist told me that there is always a chance it will come back if I do not get my health in order.

I did finally go get laser hair removal though, I had wanted it for years and I was having to shave my neck and chin almost daily, it was pretty bad. When I went to the laser treatment office, she told me that they have tons of PCOS patients. It helped so much it has given me more confidence.

Moral of the story, make sure you keep it all under control! It was so different reading what could happen versus what DID happen to me, which was basically what was in the risk factors.

I wish having the hysterectomy would've made me PCOS free, but no such luck.

[Nicoyaangel]

WOW! I am sorry to hear what happened. We really do need to keep this in check before it gets to us.

I really do feel like crying now because I have let this go. My dr. told me the same thing that it could lead to cancer but your always thinking no way not me. Thank you for posting your story, it really does inspire me to get it under control. I never heard of anyone actually getting cancer from this but I guess it is true.

Again thank you.

[thinchickie]

Hi, I was definitely one of those people who were like, not me, or not right now, mindset. I will say this too, when I nearly bled to death, there is a long story there, but I finally got to my regular doctor and they all just kind of were like

Well, you were on birth control pills, this shouldn't have happened...the bleeding that heavy. I get to my doctor after a trip to the ER, who sent me home bleeding by the way, and he did a DnC in his office, that I thought I'd die it hurt so bad.

I had to go to the hospital for two blood transfusions over three days because nobody bothered to stop the bleeding until my regular gyno saw me. Then my gyno, says, come back in a week, I will tell you the lab results.

THe emergency DnC in his office stopped the bleeding but I had to still go straight to the hospital for more blood, I was so sick.

Well, I get there and he says, I am shocked, just shocked, it is cancer. I was stunned. I just didn't see it coming. He gets up and hands me the number to a gyno/oncologist and that's that...

So, once I see the oncologist, it was all hitting home, I was a giant walking risk factor, I was more upset because I felt I'd really brought it all on to myself.

When I was laying in the bed after the hysterectomy, in horrible pain, all I could think, was wow, was food worth all this? Was not taking my metformin worth all this?

I was in there for four days, I lost my belly button too, due to the fact that when they did the hysterectomy, I'd had a hernia, from of course, being overweight, and it just grew into a horrible recovery. I had a great doctor and he tried to save it and offered to 'build' me a new one LOL, but I said, no it is a reminder that I need to take better care of me.

So, yeah, I'd say, I was thinking, oh, I have time, I am only in my 30s, I might not get 'sick' until 50, whatever I needed to tell myself, but really, I came home right after the diagnosis and sat at my computer, reading ALL the information that truly pointed directly to MY behavior that led me right to the cancer...

I cried and cried and cried. I have changed my ways, not overnight, like you think it might have happened, but I am so much more thoughtful of what I am doing to myself.

If this story helps one person to make sure they keep it in check then this was worth it, some of what I went through because the next woman might now catch the cancer at stage one.

If I had not started bleeding, they told me that cancer could've grown on for a long time before it was caught. THey told me I'd had it for between 6 months and two years. It was slow growing. THANK GOD for that!

I am lucky I have doctors who are educated on insulin resistance and PCOS, however, I was not listening when all three told me YEARS in advance, hey, get your health in order. Just because you aren't sick today doesn't mean you won't get sick. YIKES. Now I know. LOL

[WeightSmasher]

OMG!!!! What an eye opener!!! Thank you thank you for your story!!!

This has always been my worry, I have always been scarred (well, maybe not scarred enough) that the PCOS might lead to cancer. What has happened to me is that I have seen two drs and both have acted like PCOS is no big deal. Both told me that they would not lead to cancer. Both told me that as long as I have some sort of a period every six months I would be ok. Never, never did either mention IR or medication, all they recommended was BC pills. I didn't want to take PC pills because I don't think they really help the problem. They did mention that loosing weight would help but not a big deal. I need to find a good I mean a great dr. that know about PCOS and really give me a good treatment. I know that PCOS is not curable but at least I want it monitored and under control.
Your story is really sad and I am sorry you had to go through this, but I am also thankful that you shared your story and that you have opened my eyes and know I will take my condition seriously.

[timkerbelle]

Thank you for sharing your story! You are a very strong woman.
Sometimes the smartest people can make stupid decisions. I truly believe that yes - it is definitely our own responsibility to take care of ourselves, but it's a bit more complex than that.
I must admit that your story gave me a bit of a scare. I'm a big time sufferer from "It won't happen to me. I'm too young (30)" Well, its never too soon to take care of our health and bodies.
I'm so happy to hear that you pulled through ok, and that you are ready to change your behavior that led to poor health

[thinchickie]

Thanks for all the replies. I had taken myself off my metformin because it made me sick. I didn't really talk to my regular doctor about that. My gyno had been watching my insulin resistance, but then he turned it over to My regular doctor because I see him more and he actually is a PCOS specialist.

He told me I should've mentioned it to him sooner, I'd done this a year ago, taking myself off. So, he retested me a week ago and I was now, one number into type 2 diabetes.

He didn't lecture, but he did say, I should've stayed more on top of it, because it let my blood sugar levels stay out of control too long. So, he prescribed me Byetta. which so far has been great. I didn't think I'd want to do the shots, but I actually, feel better than I ever did on Metformin. Byetta is not insulin either, and the shots, you can't feel them.

So, I get retested in a month and then again in three months, and if I have lost weight and my levels are normal, due to exercise and diet, I can come off of the Byetta.

i was so sick on the metformin. I know that's a favorite for doctor's to give out for PCOS, but the Byetta actually, has been proven to help SOME people lose weight. I was constantly hungry, always, none stop. With Byetta, I don't feel that anymore. It was almost instantly gone and I felt, 'normal'. I didn't feel the need to consume all day.

It helps the food digest a lot slower so you do feel fuller longer. I was not one bit sick, or anything, like I had been. So, that's nice.

My doctor, said PCOS, can cause that. So, now, just one more thing for me to add to my list of reasons to get myself healthy. After Cancer I will say that my 'it can't happen to me' mentality, is gone. Not 100% gone, but now I see the seriousness of my situation.

When the doctor's are warning you and you just don't feel sick right at the minute, you can't imagine that one day, it might just hit you. I am now afraid of a stroke. LOL My stepsister, who is 45, just had a minor stroke...to her I am sure it feels major.. it would me.

[nando]

Dear Thinchickie,

I am sorry to hear all that you had been through. I was ignorant about the link of PCOS and Endometrial cancer till 2 months ago. My period came never went away for 4 months. I was so scared that I decided to not go see a doctor (call me stupid, but yes.. I know..) It got to the point that I was so sick and tired all the time, that I got a referral to a gynae. Like you, I was on metformin and took myself off it because I didn't like the side effects.

I ended up having to have a biopsy on that day - it was the longest 10 days of my life, waiting for the result.

The doctor then told me of the risk for PCOS women with Endometrial cancer and why we need to get on top of the hormonal imbalance caused by IR.

The biopsy came back negative of any malignancy on my part, but it was the wake-up call that I needed. Now, am back on Metformin, exercise and calorie counting.

Hope you are doing well now and thank you again, for sharing with us.