ENDO Messages for September, 2007: Re: Update to Maggie

Re: Update to Maggie

From: andrea (anonymous@obgyn.net)
Wed Sep 5 18:30:08 2007

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Hi Maggie,

I think a good start for you would be to not take anything with estrogen in it. Isn't that what the Lupron was for? To get rid of estrogen? It makes little sense to me why your doc put you on Premarin which will just replace the estrogen that the Lupron was suposed to supress. You said yourself, you don't think that he really knows what the heck he's doing.

Like I said before, my aunt had horrible side effects from Prem-Pro, similar to Premarin. I am wondering now if your episode with your vision loss had something to do with your Premarin. Maybe a blood clot temporarily blocked your optical nerve. I actually had 2 experiences like that in my early 20's. When I was on the pill, I was sleeping had to get up in the middle of the night to go to the bathroom and when I got up, vision in one of my eyes was totally black. It scared me a lot!!! At the time though, I brushed it off as maybe I had slept on my eye wrong or something. That happened twice. Now, I wonder if it was due to the pill and maybe it was a smalll blood clot or stroke in my eye. I did not want to mention that to you earlier, because I did not want to worry you further, but it is true. It has not happened since I've been off the pill. The symptoms of a stroke on WebMd are temporary loss of vision in one or both eyes....

All the BC pills say they can cause blood clots, heart attack, stroke.....and I worry for you because you said you have had cancer in your family as well. At least just try prometrium for a week? You would get all the benefits of hormone replacement, but without dangerous risks. Prometrium is a patented version of bio-identical progesterone, so doctors are more willing to prescribe it. Whats the harm in trying it for a week or two? I promise, if you've been through Lupron, you will be amazed at how much better this will make you feel. And if you've done Lupron, YOU CAN DO ANYTHING!

You are a strong person, and I look up to you Maggie and your determination to fight. You will get you energy back and not be so moody and probably experience many other benefits too. If your doc won't check your hormones, I'm sure it would be fine to take it anyway because I'm sure the Lupron has made your progesterone level extremely low. This is an option other than the pill and much, much, safer. I'm sure you will write me back if you try it and say, "Holy cow, why did I not try this sooner?!!"

I wish you all the best and I'm sorry your search for help has been so frustrating. Please trust me on this. It is the only thing that I've found that helped my endo at all in over 20 years. I think I will be getting my lap in October now. My insurance approval letter came through and from the wording, I don't think they are excluding endo from my coverage - thank God! That's a big relief.

My prayers are with you!

Your friend, Andrea :)

At Tue, 4 Sep 2007, mdustin wrote: >
>Hello again everyone. I haven't been online for a little while, due to
>my family moving to a new house. I hope everyone is doing okay. I am
>definetly having a difficult time lately, I'm sure, due to all the
>changes I've been having lately. Anyhow, I'm 3 months off of Lupron
>now, I still don't have a period (normal, I guess?) I've been having
>alot of anxiety issues, whether that is situational, or chemical, I
>really don't know. The stress and anxiety tiggers pain, which has
>always been the case. I constantly feel like I'm 'just about' to get my
>menses, but it doesn't come. I guess some people would be happy for the
>lack of a period, but for me, it's not all that fun, seeing how I have
>the physical symptoms of a period without the actual bleeding. Not
>good. I see my doctor for a 'check-up' at the end of this month and I
>know that he's just going to put me back on the pill and 'wait-and-see'.
>I'm terrified that when I start to have a period again, it will be
>non-stop like it was before I was diagnosed (which lasted 3 years). I
>still have "Endo pain". I'm moody and miserable on top of it. Has
>anyone been in my position? About to start all of this over again, it
>seems. I wish I didn't have to go back onto birth control, seeing how
>nothing worked for me before (including it's purpose...birth
>control...I've become pregnant twice while taking the pill). But seeing
>how I don't wish to have any more children, I guess I need to take
>something, right? It feels like my body and mind are just coming
>un-glued. It's a very scarey thing. Any advice? Thanks in advance.
>~Mags

Next message: andrea: "Re: how do you really know who is a 'good' doctor and who isn't?"
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