Hi this is my first post, but been lurking for some time. About 2 years ago, I finally figured out I had PCOS (without the help of a doctor). For first 10 years after puberty, almost NEVER had a period..but of course I was thrilled not to have to worry about it, and I had no interest in seeing a doctor. (had maybe 3 complete periods in all that time.) Then couple years ago, I started getting a few periods, so I thought I was becoming "normal." Then I got a period that wouldn't stop! I bled nonstop for almost six months. during that time I discovered pcos websites.....realized that I have had almost EVERY symptom in the book. Classic textbook case....I'll spare the details. Now, it more common to not get periods (like I was for 10 years), but heavy/long periods are known symptoms as well. Finally went to doctor who just gave me BCP. Don't like the idea of taking fake hormones, so experimented with progesterone cream. The cream works well if use BCP for the first cycle, then the next month transition to cream. but using cream takes a lot of discipline, and if I fell off the bandwagon, the only way to reset everything was to go back on the BCP for a month.
Well, the BCP prescription ran out....didn't go back to the doctor. after another 6 months of bleeding, coulding stand it anymore so chose another doctor. She gave be all kinds of bloodtests, an ultrasound, and sent me to an OB for a biopsy - NOT FUN. Hormone levels came back normal (hard to believe) but confirmed glucose intolerance. the ultrasound confirmed polycystic ovaries.
The biopsy came back NORMAL, which I expected because I kept telling them that I had pcos, not fibroids or cancer. In the meantime the ob put me on provera (but I'm hoping to transition back to cream, despite what the ob says)
OK.....well I figured that since the biopsy was fine, and the ultrasound didn't reveal anything other than cystic ovaries, I would just redouble my efforts to manage this syndrome naturally. I started low-carbing and have dropped 15 pounds right away...and i feel GREAT. also, my period went away on its own for a whole week!(believe me that is way more than I usually get.) i feel like I might be able to get regulated in a couple months if I continue low carbing and be diligent with cream and supplements.
(Sorry this is so loooong...) Well I was feeling pretty good about taking my health into my own hands...when the ob calls me up and says that even though the biopsy was fine, she wants to take a better look...with a hysteroscopy and D & C! OMG! This seems like an awful extreme, invasive, and scary procedure. I have researched the procedure and it is NOT FUN. I was not thrilled having to get a darn biopsy in the first place. I'm tending to distrust the medical establishment more and more...but I'm usually not the type to openly defy doctor's orders. Am I just being hysterical and irrational? Do I really need to submit to this procedure? Would appreciate some input. Thanks for listening!

RhaChaCha,
I am so sorry you are going through a difficult time right now. I understand the frustration you feel with the medical field, as well. Unfortunately, I would suggest that you allow the doctor to follow up as she has indicated that she is inclined to.

While it is true that PCOS causes us to miss regular visits from AF, the absence of AF also makes us terrific targets for uterine cancer. While I am thrilled to hear that your uterine biopsy came back negative, it may be necessary to have a D&C to help shed the lining of the uterus - especially because you have allowed yourself to go without AF for such long periods of time. It is recomended to make sure you have a bleed at the very least every 90 days.

However, BCP are not the alternative you have to inducing a bleed. You may also be prescribed Provera. These are taken once a day for 10 days or twice a day for 5 days - either way, it works, and one doesn't have to take the same amount of pills as would be necessary with BCP.

I have read that there is also great success with the Progesterone cream, as you have also mentioned. The key is to follow through and make sure that you force your body to "do the right thing". This may mean that you have to take some artificial hormones. I hate that, myself, but I also don't want to develop cancer, and I know that I am a high-risk, so I need to be extra careful.

As for the HSG - hystereoscalpingogram, yeah, you're right, it's no fun at all. Especially if you have never been pregnant before. They manually dialate your cervix and inject dye into your fallopian tubes to see if there is any blockage that could be preventing you from ovulating. Sometimes, it has a theraputic effect, as well and flushes away obstructions. The ONLY good thing I can say about this procedure is that it is over quick. Also, if you can, take painkillers first.

Hope this helps,

-Beth

I just found this old thread that I started 2 years ago, and reading it was very chilling. Despite doctor's and friends advice, I freaked out and refused the D&C. I was so convinced that my problem was strictly hormonal, and as long as provera kept it under control then I must be fine. I had read that it was harmful NOT to shed the lining on a regular basis, and since my bleeding was heavy I figured everything was manageable.....

I didn't see any doctor for 2 years. My period got weird again, so another ultrasound and another biopsy. Last week they handed me the news: endometrial cancer.

I'm 31 years old and I have to have a complete hysterectomy including removal of my ovaries. I can never go on estrogen replacement. Now PCOS is the least of my problems.

2 years ago I was in so much denial - I was so suspicious of doctors. I just wanted to take my natural progesterone cream and use LC'ing to control my insulin. But it wasn't enough.

I will continue LC'ing not only to prevent diabetes, but to keep my insulin in check so that my remaining estrogen supply (from fat, etc) won't get out of control which could stimulate more cancer. I'm trying to stay positive and stay vigilant about my health, but the future is still daunting.

I've had to learn my lesson the hard way. PCOS must be taken seriously! Its not just a "hormone problem."

Thanks for listening.

RhaChaCha,

I am so sorry to hear about what you're going through.

Please stop blaming yourself, though. It's pointless and you need kindness right now, especially from yourself. Please let it go and focus your energy on getting better.

I see that you posted this a few weeks ago. This is the first time that I've been in the PCOS forum, I'm sorry I missed it.

I know so many people who've gone through some kind of cancer and they are all doing very well; their lives are all back to normal. I'm sure it's frightening, but hang in there. Look at Lance Armstrong -- have you read his book "It's Not About the Bike"? It's very inspiring. And now he's headed for another record-breaking win in the Tour de France! I'd be happy to send you my copy.

Please feel free to pm me anytime for support and encouragement. You are in my thoughts and in my prayers.

Allison

I am so sorry to hear about your latest diagnosis.. I wish you the best during this trying time.. please take care of yourself and let yourself heal... visit us when you can

I hope all goes well for you.