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PCOS/Insulin Resistance Support Support for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.

My Story & Some Questions

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Old 08-23-2012, 06:55 PM   #1
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Arrow My Story & Some Questions

Hello everyone! I'm 20 years old and I was diagnosed with PCOS three years ago. And it was not your typical diagnosis (or at least I hope not!) WARNING: THIS IS GONNA BE REALLY LONG!

About six years ago I went to the emergency room with extreme pain in my lower abdomen. Some scans and tests later they told me that it was just 'lady pains' and to take some advil and suck it up. Well, for three years I would have pains and I would do what they said. Take medicine and suck it up. I thought this was the pain that every women experienced and that I was just being a baby.

One weekend a friend and I went on a road trip to look at colleges. Luckily for me, we decided to spend our first night at my aunt's house. I woke up in the morning with extreme pain. I took some Pamprin, Advil, and sent my friend to the store for crackers, sprite, and bananas. When she got home (and at this point my aunt had come home from work because I had called her in tears). I was refusing to go to the hospital because I was afraid they were going to tell me the same thing, that it was cramps and I was being a baby. However, with the pain not going away, I eventually gave in and went..

Upon reaching the hospital they instantly put me on a morphine drip (thank god!) and starting doing test. I can just remember being so scared that they were going to tell me that I was being ridiculous and that there was nothing wrong. I had just finished a cat scan and was waiting for a pelvic exam when the doctor came in and told me the verdict.

His opening line was "It probably isn't cancer." He went on to inform me that I had a large tumor the size of a large watermelon. He said it was about the equivalent of having twins. He explained that it was attached to my right ovary and had dropped and twisted up in my tubes. He wanted to admit me and have surgery done to remove it as soon as possible. I waited for my mom to arrive (I wasn't 18 so she had to be there before they would admit me) and then went into surgery. They weighed me right before surgery and then right after surgery and there was a weight loss of 18.7 pounds from the removal of the tumor.

Thirty two staples and a 17 in incision later I head back home to find a doctor that can help me figure out what the **** just happened. I go to a doctor recommended by my family practitioner and am given the PCOS diagnoses. I was put on the depo shot and was given vaginal ultrasounds every six weeks (I had more cysts forming that were getting larger and they were following the growth). I really didn't know much about PCOS and apparently neither did the person who diagnosed it.

I visited another doctor for a bladder problem I was having and this is the doctor that has changed my life. When she was asking about past medical problems and I told her about my PCOS she starting asking me all these questions. When I told her I didn't really know anything about it and that no, I wasn't on metformin or Vitamin D, or on a birth control pill she was not happy. She pretty much took over right then and there as my main lady doctor. She got me in to see an endocrinologist and a nutritionist, and got me on the medicines and vitamins that I needed to be on. I finally have my hormone and insulin levels to almost normal and am finally starting to be able to lose weight!

WOW, that was long! For those of you who stuck with me through all that (or those who just skipped down the the bottom) here are the questions:
I don't really know anyone else, at least personally, who has PCOS, so although my doctor gives me lots of information, I don't really have any first hand experience on what works and what doesn't and things I probably should look out for. I definitely plan on looking through this site more as I feel I'm going to learn so much here, I was just wondering what you all thought were the things I need to know the most.

Oh, and sorry if parts of that didn't make any sense. I kinda was just typing whatever popped into my head
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Old 08-23-2012, 09:32 PM   #2
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Oh my gosh, you poor thing! A lot of doctors refuse to treat or even take PCOS seriously, it's not good that you were having bladder problems, but at least it put you in touch with a decent doctor. I am at the opposite end of the issue so now in my 40's I am doing okay with a NuvaRing, lots of vitamins, and believe it not a tanning bed during winter months. A few years ago I did okay on Yaz, but then my insurance switched me to a generic and the side affects were worse than the PCOS. Be very careful of generics when it comes to hormones. I was told that when I stopped fertility treatment they could no longer give me Metformin, but when I was on it, dexomethisone, and lots of progesterones during the latter part of my cycle I felt pretty good. It sounds like you are on top of things. Good luck with everything, and one last thing. .. Seriously do not think that you can wait to get pregnant. At 27 a doctor warned me that I had better try soon or lose the chance, many years and a lot of fertility treatment later I have no children. I am sure the younger women here who are still dealing with the worst parts of PCOS in an age where it is taken more seriously, will be able to give you lots of pointers.
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Old 11-16-2012, 05:49 PM   #3
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I went to the doctor also for my pcos and she sent me home with nothing... sorry you had to go through that that is really sickening doctors barely listen to their patients at least in my experience. And yes your case was an extreme one.
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