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Lupus patient having hyster
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01-20-2012, 07:50 PM
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HysterSister
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Posts: 2
Hysterectomy: February 3rd, 2012
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Lupus patient having hyster
Hi, I am new here. I am having a total hysterectomy on 2/3. I also have Lupus & am looking for some support from some that have been there, done that. Not even sure what questions I should ask. Have some friends who've been through this, but its the Lupus makes me look for other support.
Thank you to anyone who may be able to answer any questions.
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01-22-2012, 03:15 AM
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HysterSister
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Posts: 281
Hysterectomy: December 9th, 2011
Surgery Type: LSH
Ovaries: Kept 1 or both
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Re: Lupus patient having hyster
I assume you have SLE. I have DLE which isn't as involved but still negates most HRT therapy.
Honestly, if I had ANY OTHER CHOICE, I would have done it...rather than have the hysto. I left my ovaries, but they are not working so I went into sudden menopause and the symptoms are really tough to manage, and make life hard. Taking HRT would of course make it oh so much more bearable, however, as you know, hormones can jump start Lupus into attacking. So I am not doing any HRT. But am using vitamins and other methods instead.
If you have a good immunologist, start there, and have the conversation with them about what is best for you.
Exaust all options before doing the Hysto....and then hang on and hope you are one of the gals who has light symptoms....many do have really light symptoms.
You are not alone!
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01-22-2012, 08:37 AM
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HysterSister
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Posts: 6,574
Hysterectomy: September 24th, 2001
Surgery Type: TAH
Ovaries: Removed both
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Re: Lupus patient having hyster
Hi There!
I don't have lupus but wanted to welcome you here! Already I see Twitch has given you something to think about -- lots of great support here, whether you end up finding this operation is right for you or not.
My doctor pulled me off HRT very shortly after I began it, and I was lucky; I didn't suffer much from the typical menopause symptoms. It'd be great if we could know ahead of time how our bodies were going to react! This makes decision making very difficult, to say the least.
I hope you are able to find the answers you need and all works out well for you! Keep us posted.
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01-22-2012, 11:12 AM
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HysterSister
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Posts: 933
Hysterectomy: November 15th, 2011
Surgery Type: TAH
Ovaries: Kept 1 or both
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Re: Lupus patient having hyster
Irelandbabe - I have no answers for you but wanted to say Good Luck! I had a friend in college with Lupus and remember the difficulties she had. Hysterectomy isn't easy for anyone and for you I can only imagine the added difficulties you face. Like Twitch said, have a long talk with your specialist.
Wishing you all the best. (((HUGS)))
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01-22-2012, 01:54 PM
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Posts: 14,518
Hysterectomy: July 20th, 2011
Surgery Type: TVH
Ovaries: Kept 1 or both
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Re: Lupus patient having hyster
Hi there I also have lupus and had my hyster 6 months ago. I did meet with my rheumatologist preop and asked for any input, but she gave me none. She said she had no concerns about my condition and up coming surgery. I have been having serious issues with pain post op. The pain continues to increase. It is having a serious impact in my quality of life. I've had ultrasounds and CT scan and my GYN feels that my issues are not gynecological as all the tests came back normal. I am currently waiting for a new rheumatologist appt at the end of Feb. I hope this doesn't happen to you and I wish you a quick recovery. But please do lots of research and ask lots of questions before you make your final decision. There is no going back and undoing this. I really wish there was.
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