ENDO Messages for January, 2007: Re: A Rant

Re: A Rant

From: Erica (anonymous@obgyn.net)
Wed Jan 10 20:25:49 2007

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In reply to: Stacey: "A Rant"

Hi Stacey,

First I want to say that my intention is not to freak you out but I do feel that I should tell you of what I am currently going through. I went through two injections of Lupron about a year ago and had some side effects such as hot flashes and most really terrible mood swings (feeling rages and then bursting into tears throughout the day) and it was a little much on me emotionally so I discontinued the treatment. Fast forward a year and I was at my wits end again with this disease looking for something that would bring an end to my pain since I've had to take percocet going on 2 years now to get through the work day and on my days off I barely go out. So I decided to give Lupron another try. About a month ago after my second injection I started having hot flashes, decreased breast size, increased appetite and some taste adversions all at the same time and I could deal with this. However I developed SEVERE joint and bone pain pretty much over night. It first affected my back, my ankles and wrists then moved to my knees. When it moved to my knees the second night I experience the worst pain I've ever felt and the next day could not walk without assistance. This lasted for two days and I had to stay home from work and had these explosive like pains in my knees that were debilitating, painful, and kept me from sleeping and walking. Its been about 2 weeks and I'm still having bad joint pain in pretty much various parts of my body on any given day.

I'm having to take alot of pain meds and am having trouble going down stairs, sitting for long periods, etc. My doctor explained that it is because the lack of estrogen but I just can't believe how hard it hit. I instantly decided to discontinue my plans for more injections. I'm having to add back estrogen and take glucosamine daily for my joints. I've read that these effects can last up to 6 months after treatment and so I know taht it will take alot of time for me to get back to the way I was. I will say I haven't had any pelvic pain for 2 months but the bone and joint pain is not worth it. Again every person reacts differently and I didn't have these effects my first go around but please think very carefully about this decision b/c as I had read about bone/joint pain I always imagined it being an aching and it is way beyond that not to mention the long term effects w/ bone density. I always thought that the endo pain was the worst b/c of its persistance but this pain surpassed it. I encouage you to read through the actual Lupron clinical studies..I wish you the best of luck with your decision..

At Wed, 10 Jan 2007, Stacey wrote: >
>So, this is my first post and I feel the need to vent. Mostly because
>some of you will have, unfortunately, gone through the same experience.
>I only found out I had endo. when I had my son via c-section 3 years
>ago. My gyno said it was probably one of the worst cases she had ever
>seen. Yeah, nice. I basically had no knowledge of endo. and my gyno.
>did not aggresively suggest any suppression of my condition. So, flash
>forward to November 2006 when it was discovered that I had a football
>size endometrioma taking over one of my ovaries. Please take note that
>I hardly felt any pain at all during this whole time!! I only went in
>for my annual pap smear. So, after about a month of thinking I was
>dying of cancer, they finally cut me open (the long way) to get it out.
>It was not cancer and I am sincerely grateful. I guess I am quite upset
>that I did not take further steps to educate myself about endometriosis.
>I had no idea whatsoever that it could grow large masses in your body!
>I'm getting ready to start a course of Lupron and would like to hear
>from others as to their experiences with this drug. I don't even like
>to take asprin so taking medication like this gives me pause. Sorry for
>this thread to sound so bitter but I just want others to take time to
>research their condition fully. Thanks for listening!!

--
Erica

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In reply to: Stacey: "A Rant"

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