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Here's my story, please give your opinion (long)From: Amy (anonymous@obgyn.net)Wed, 7 Feb 2001 20:39:20 -0600 (CST)
Hello everyone. I am 25 years old and suspect that I have PCOS, b but getting an accurate diagnosis and treatment seems to be an extremely elusive thing. This board has given me some sense of peace and comfort at the time I want to scream. So thank you all for that. Okay, I got my first period at 13. From ages 13-19 my periods were fairly normal and regular. At 19 I went on the combined birth control pill to prevent pregnancy. As a result my periods were regular, and hit exactly every 28 days. I was on the pill for five years and loved it. However, my mother developed breast cancer, and due to the fact that there is a very large familial incidence of breast cancer, it was recommended that I go off the pill. I am married, and want kids in a few years, but I wasn't ready for them now. After I went off the combined pill, my gynocologist recommended the mini pill. As soon as I went on this pill I stopped having periods, I developed moderate acne, noticed weight gain, particularly in my mid-section. I assumed that this was caused by the mini-pill. After NUMEROUS calls to a doctor who acted like she could care less, I decided to go off all pills. She suggested maybe this mini-pill was the cause. Still, the symptoms persisted. Unfortunately, I have KAISER insurance. They refused to let me see any doctor except my primary care physician who had no idea what my problems were. She just referred me to a dermatologist. I am currently taking medication for my acne, and as long as I do so, it isn't too bad. However, the other symptoms continued to persist and were making me very unhappy. After several times of making an appointment with my primary care physician to get the "privledge" of a referral I was allowed to see the gynocologist. I was put off and told that I needed to chart by basal temperature for two months to see if I was ovulating. The doctor said they couldn't help me unless they knew more information. I charted my temps for two months (by the way, the were very low 95-98) and were all over the place. I could not recognize any ovulation pattern. Finally after getting hysterical with the "advice nurse" they allowed me to make a gynocology appointment, but only, I think, because it just so happened to me time for my yearly pap smear. Before going I typed my symptoms into my search engine and came to this place. I can't believe that my doctors act like they have no idea what could be causing my problems. I printed reams of stuff off the net and went to my appointment armed with all my research. You should have seen the nurse roll her eyes! I had to act like hysterical woman for them to listen to me. I do not understand why I have to do research and convince THEM of my problem Isn't that why they went to medical school? I know they were thoroughly annoyed by me, but I was determined I wouldn't leave until I got some answers. The doctor agreed that it looked like I wasn't ovulating. She did an physical exam and said everything "feels fine." I had to bring up PCOS and thyroid problems (which was my other guess as to what is wrong with me). I told her I had 4 periods in the year 2000, and my last one was in August. She told me she'd like me to take medroxyprogesterone for five days, so it would "induce" a period. She told me to expect it to be heavy, as it had been so long. After taking this drug I did have a slight period, but it was very light. She also had me take a slew of lab tests: thyroid stimulating hormone (ultra sensitive), prolactin, FSH, Glucose fasting serum, and cortisol free urine. I then asked her if I should be getting a vaginal ultrasound (as I had seen this recommend on the board) and she put me off, saying let's see what these lab tests show. I am scheduled to meet with her in a week discuss my lab results. I am very nervous about this. On one hand I don't want to have PCOS, but on the other, I hope they say I do have it, as there seems to be no other explanation. What do you think about my symptoms? Do you think my doctor is pursuing the correct course of action? I defintely get the picture here that I am going to have to fight tooth and nail to get any movement with Kaiser. What should I ask my doctor when I meet with her again? Should I believe her if she says all my levels are "normal" and that I should just lose weight? It seems many of you have been told one variation of this over your years of struggle. This is an uphill fight. I don't know if I should trust Kaiser or believe anything my doctor says. At the end of the visit she said, "Don't worry, hon, this isn't going to prevent you from having children." Obviously this is a very real concern for women with PCOS, and she was lying to my face! Sorry for the length, but sometimes I just need to vent! Any advice at all would be greatly appreciated from those of you who have been dealing with this for a long time. Thanks, Amy
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