PCOS Messages for October, 2001: Re: A thanks.....and another '?'

Re: A thanks.....and another '?'

From: Belle (anonymous@obgyn.net)
Fri, 12 Oct 2001 09:16:48 -0500 (CDT)

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In reply to: Deirdre: "A thanks.....and another '?'"

I hesitated to post to your FMS question but I think that it is worth noting that it seems that once you have an auto-immune disorder, you are likely to get another. I knew this from school but my endo reminded me of this when I told her about the MS I had been diagnosed with. I have also had to do research on this and I read everything and thought about it to make sure it made sense and then I was lucky enough to find out that the leader in the industry was only about an hour and a half away from here. I got lucky.

Find papers that have been written on FMS then check the bibliography, see who is referenced. When you begin finding a repeating group of names, you know where to start.

Check to find the national group for FMS. They are usually made up of people who have had the problem for years and have been keeping up on the research for years. They usually have the most up-to-date information and are usually aware of new scams as well.

About getting better, I have the benefit of being at least 3rd generation PCOS as well as the parent of a teen with PCOS so I have seen the symptoms fade and then return my whole life. At this point, there is no cure, this is a genetic kind of thing and we do not yet have any meds that will change your genetic structure.

We can do things that will make the symptoms subside. This does not make us cured but it does make us "better".

Currently, I have very little facial hair (went from plucking, shaving waxing or yanking out with a epi-lady type tool every day to plucking individual hairs just before my period), major decrease in the hair on the rest of my body (I only *have* to shave once a week, but after 25 years of it, I cannot stand to hang on that long), thin but not thinning hair, normal weight (lost a lot), fewer skin tags, etc. It appears that I am normal, but I am not cured.

I saw the same thing after I had surgery to remove the cysts from my ovaries several years ago. It lasted about a year and a half. BCP worked well at hiding the symptoms when I was about 20. Mom had a total hysterectomy which worked for a year or so, but symptoms returned.

At this point we have PCOS for life. The main thing to be concerned about is insulin. If your's is fine, that is great, if it has not been checked, it needs to be. With PCOS, we are FAR greater to get diabetes than the average population. That is a terrible disease!

If you are only being "treated" with the pill, you need to talk to your dr about other options. The pill you are on is probably the best pill available for us in the US but if your read the insert, you will see that it decreases glucose metabolism. We certainly do not need that! If you do not have an insert, you can get one from their site. It is written in PDF format (Adobe Acrobat) or I would have linked it for you. You can find a wealth of information at http://www.pcosupport.org if you have not already been there.

At Fri, 12 Oct 2001, Deirdre wrote: >
>Thanks for all the replys about Fibromyalgia. I am doing my homework as
>usual.....same as I try to do with PCOS. It's hard with so many
>conflicting views though, don't you agree????? How are we supposed to
>know what's right?
>
>How are we to know "IF" we ARE indeed getting better?????
>
>thanks gals....
>
>--
>Deirdre

-- Hope this helps,

Belle

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