Re: Am losing it with my PCOS
From: Rachel (anonymous@obgyn.net)
Thu, 21 Aug 2003 08:58:36 -0500 (CDT)
Hi Anonymous! Thank you so much for your thoughtful reply. You have
just confirmed thoughts that I have already had. There is one
reproductive endocrinologist in Oregon that I have found; he is in
Portland, which is 300 miles away over long, treacherous mountain roads
both in the summer and winter. I have been hesitant about going that
route just because of the vast inconvenience in going to see him and
having him not work out either. However, your reply just confirmed for
me that it is definitely worth a shot and worth the inconvenience to see
a "pro" in the field. He is at a major research hospital, which also
makes me feel pretty positive because usually research hospitals are up
on the latest information and new technology simply because they have to
be to be competitive.
I do exercise at least five days per week, both at the gym and
walking/elliptical trainer/running at home. It really helps to clear my
head. The problem that I still have with this is the expectation that I
should lose some weight from all this exercise, which I don't, which
ultimately leaves me unmotivated to continue. I am still working on
getting it through my head that exercise for me is not going to be an
avenue to weight loss but needs to be an avenue to "stress loss". I'm
still working on it.
Thank you so much again for your wise advise. It has helped me make
some decisions about which way I want to go with this.
At Tue, 19 Aug 2003, anonymous wrote:
>
>Hi,
>I am not a doctor... but I have been in treatment for PCOS for 10
>years. What is really tough is that sometimes when one thing is
>working, your body will just change a bit and then you have to re-work
>all of the meds, and routines again.
>I would skip the GYN on this one and go straight to a reproductive
>endocrinologist. My endocrinologist is my "main" doctor. I see other
>doctors for other needs (a dermotologist, an OBGNY, a nutritionist, an
>eye doctor etc) but the endrocrinologist, is in charge of my PCOS. It
>is impossible to take care of yourself when you have too many different
>people telling you what you should and should not do.
>I was at the OBGYN yesterday for an annual check up and she asked me how
>the PCOS was going. I told her about my treatment (2500mg Metformin, 1
>hour per day at the gym with heart rate at 155 or above, no bread, no
>pasta, no candy- I am NOT saying I am perfect every day... but these
>are my daily goals!). She said that all sounded great and wished me
>luck with my weight loss. I was really impressed that she did not try
>to get her "two cents" in. She did not even comment about the fact that
>I am 50 lbs overweight. I told her that I wanted to get pregnant in the
>next year and she said that she said she was glad I had a real "pro" on
>my PCOS case (my endo) and that I should call her when I get pregnant.
>She gave me an Rx for pre-natal vitamins. The fact that she recognized
>that that was not her area of expertise really impressed me. She did
>say that if I ever needed a new endo (closer to home) that she could
>help me find one. I really like my endocrinologist and am very happy to
>have him in charge of my PCOS. He lives in my parents hometown- 1,000
>miles away from where I live, but I get back there twice a year and
>always see him when I am there. I guess what I am trying to say is it
>might help you to choose your "pro" on PCOS and listen only to them for
>a year. Make sure it is someone who has treated hundreds of women with
>PCOS. Ask them when you see them the first time. Even with my
>secondary doctors and providers I always make sure that they know about
>PCOS. For example, when I was looking for a trainer at the gym, I
>interviewed 3 women trainers and chose the one who said she had had lots
>of PCOS clients over the years and knew what I was up against. She is
>not playing any part in my treatment really- but knowing that she
>understands what I am going through makes my trips to the gym a lot more
>pleasant.
>
>I hope this helps.
>Helen
>PS. My trips to the gym are the biggest part of my treatment. Just
>walking for 30-40 minutes a day can make a world of difference to how I
>feel. If I miss a day at the gym, and don't even go for a walk, I feel
>terrible. I don't like working-out really, but I know that if I don't,
>my body is completely out of control internally. Have any of your
>doctors suggested going for walks?
>
>At Fri, 15 Aug 2003, Rachel wrote:
>>
>>I am needing some serious help here! I was diagnosed with PCOS three
>>years ago, put on the pill, not put on any other meds and nothing
>>helped. I got a second opinion one year ago, had more tests run, and
>>was put on Glucophage, Aldectone, prometrium for my periods, and told to
>>eat the carb addicts diet. Same dr. two months later put me on an even
>>more strict diet and upped my glucophage because I was still gaining
>>weight, irregular periods, etc. Still gained weight; went back and got
>>put on the strictest diet known to man and was "shuttled off" in my
>>opinion to a dietician (my last four appointments haven't even been with
>>the doctor, just the dietician). This dr. is supposedly the forerunner
>>in my area in PCOS treatment. Went to a third dr. after getting
>>frustrated with the first two; told me I may not even have PCOS, told me
>>to quit smoking and lose weight and I would be fine. I have been told
>>to go on Atkins, Sugar Busters, I'm borderline diabetic, I'm not
>>borderline diabetic, eat fruit, don't eat fruit, blah, blah, blah . . .
>>the list is endless. I cannot eat sugar alcohols, so going completely
>>sugar free is difficult, eating strictly low carb makes me stomach sick,
>>my stomach is chronically messed up, and I mean to the point of
>>interfering with my ability to even leave the house. My periods were
>>regular for about nine months on the prometrium, but are now back to
>>complete whacko and out of control. Oh, and to top it all off I have
>>been trying to have a baby for about four years now, have taken Clomid
>>and all of that whatnot, fertility monitors, sperm tests, everything
>>that takes the "fun" out of conception, and nothing. I am so
>>frustrated! I have gone from shocked and stunned and hopeful to just
>>downright angry! I'm twenty pounds heavier than I was when I started
>>getting "treatment", and my body is still totally out of my control.
>>Does anyone have any suggestions? I've thought about forgoing the
>>gynecologists and heading straight for the endocrinologists, I'm
>>pondering putting myself in clincial trials, anything to get this stuff
>>right. If it wasn't for being terrified of becoming diabetic, I would
>>just throw my hands in the air and forget all of this! I would really
>>appreciate some thoughts and suggestions from anyone.
>>
>>Thanks!
>>
>>--
>>Rachel
>>
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