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Reply | Forward Message #754 of 826 |
Re: [Women with SCI] woman issues

Hi,
thanks for the info.  I have also had bladder augmentation surgery.  I have
spoken to my urologist about a botox injction.  He said that
because they attached my appendix to my bladder, in the augmentation surgery,
Botox will not have any effect on it.  So, it will not help my spasms.  Do you
have either part of you intestine or appendex attached to your bladder (from
that surgey)?
My gyn suggested the oblation procedure.  This is an option I will be looking
into. 
Why having the mitroff surgery are you not able to have the hysterectomy?  Just
wondering about that.  Have not heard of this as a contraindication before.

Thanks
mary 



----- Original Message ----
From: Monica KamalRossa <xena-rolls@...>
To: womenwithsci@yahoogroups.com
Cc: Dziegler222@...; Sandy Young <youngsandradee63@...>
Sent: Thursday, September 4, 2008 10:24:51 AM
Subject: RE: [Women with SCI] woman issues


Hi Mary,

I had been having horrible bleeding. I was wearing thick pads for months
and bleeding through. It was embarrassing. I was seeing different docs to
determine what to do. Hysterectomy or there were 2 other procedures? I
finally had the uterine oblation procedure. This has decreased my bleeding
significantly as they did not want to do a hysterectomy for a variety of
reasons:

1. they thought it was too risky as I have had the mitrofanoff (ability to
cath via my belly button)

2. they thought I was premenapausal due to my age and didn't want me on
hormones.

Additionally, your bladder spasms could possibly be helped with botox. I had
a botox treatment on my uterine wall and it decreased by spasms
significantly.

Recently there was an article in the following online web site:
www.peopleonwheels. com <http://www.peopleon wheels.com/>

This is part of the article-

Urologists inject Botox in the bladder, relaxing the bladder muscle which
relieves leakage and back up of urine into the kidneys and can replace the
need for oral medications that lead to dry mouth and other reactions. Many
who have used it say the results are unbelievable.
Allergan, the developer of Botox, is now setting up study sites to prove to
the insurance companies how well it works.
According to Steve Winter, an activist attorney who fought and won the
'single use catheter' fight with Medicare, any spinal cord injured patient
or MS patient who uses a catheter and passes a screening test can get the
Botox FREE along with all the tests paid for as well and money for their
time. Call this toll free number( 1-888- 617-8839) and check out this site:
www.dignitytoos
<http://rs6.net/ tn.jsp?e= 001hJjGfxS_ -YTyi2tWkZaJdU1c qVStjnjbir_
3LGbOMmqBIdQa
QKg2fdj-RtuqxFB1nbi wit1M9DlraF9foLD sKO7NDvJ3xSIif5o l0FlbVWfjYJNLImb WAQ==>
tudy.com to see if you can take part in the study.
This use of Botox is called a "chemical sphincterotomy" . It essentially
relaxes the urinary sphincter for six to nine months, allowing men to switch
from intermittent cathing to an external catheter that empties into a
legbag.
This might be preferred because it would 1) reduce UTIs and the long-term
damage they cause, 2) address chronic leaking between intermittent cathing,
3) protect your kidneys by reducing reflux and 4) allow you to ditch your
anti-cholinergic meds and the nasty side effects (including dry mouth,
blurred vision, constipation, thermoregulation problems, and confusion) that
go with them.
For others, it may be more about time management or addressing hygiene
issues in difficult environments.
For quads, it's an alternative that may make more sense than having a
caregiver perform intermittent catheterization or than living with an
indwelling catheter, whether it's urethral or suprapubic.
Check out the Bladder Matters conversation with Bob Vogel at the New
Mobility Web site for more!

<http://rs6.net/ tn.jsp?e= 001hJjGfxS_ -YS89G1IZq59jbVo jgVrvaxGvMwn-
XyYhZlvgpj1
NwCskpYpumLLQOGaYt5 kmXPaYrpba47AZmG K0iWRYwRWXU6HWp3 M2m3XX6AXdlH_ z8gHMpNGyizQ
9TU2NK5FI6X_ XnilO40MllFIQAcS W9aeGv18> Read More!

You may want to do both.

Have a great day!

Monica
<http://www.rossadig italdesign. com/> www.RossaDigitalDes ign.com
Madison's Spinal Cord Injury Group Coordinator
<http://www.SCI- Madison.org> www.SCI-Madison. org
------------ --------- --------- --------- -
Be the change you want to see in the world. -- Mahatma Gandhi

_____

From: womenwithsci@ yahoogroups. com [mailto:womenwithsci@ yahoogroups. com] On
Behalf Of mmchmc1
Sent: Wednesday, September 03, 2008 11:57 AM
To: womenwithsci@ yahoogroups. com
Subject: [Women with SCI] woman issues

Hi,
I'm a T-10 complete. I am almost 8 years post injury. I am looking
for women who are having GYN problems. Being complete, I can not tell
when my period (the curse) is coming. I am not regular. However my
bladdre spasms and I become incontinent. My urologist recommends a
hysterectomy. My GYN does not. Really tired of having a period and
would not mind not having one. They say that I am several years away
from menopause. Psychologically I can not deal with the incontinence.
Any one else with this problem, suggestions or anything?
mary

[Non-text portions of this message have been removed]






[Non-text portions of this message have been removed]




Thu Sep 4, 2008 7:41 pm

mmchmc1
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Forward
Message #754 of 826 |
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Hi, I'm a T-10 complete. I am almost 8 years post injury. I am looking for women who are having GYN problems. Being complete, I can not tell when my period...
mmchmc1
Offline Send Email
Sep 3, 2008
4:57 pm

Hi Mary, I had been having horrible bleeding. I was wearing thick pads for months and bleeding through. It was embarrassing. I was seeing different docs to ...
Monica KamalRossa
xenarolls
Offline Send Email
Sep 4, 2008
2:25 pm

I am a 38 yr. woman and had to have a full hysterectomy.I too had trouble with my bladder and bowel. I wear an intermintant cathater and had to have a clostomy...
danelle2003sauers33
danelle2003s...
Offline Send Email
Sep 5, 2008
3:34 pm

How do you do with your colostomy? I am pressured to get one but I refuse. Thanks for sharing. Have a great day! Monica KamalRossa ... Be the change you want...
Monica KamalRossa
xenarolls
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Sep 5, 2008
5:55 pm

I love it now! It was hard in the beginning, but it is worth it and I wouldn't want to do anything else. I had to have it due to all the accidents and the...
nellie sauers
danelle2003s...
Offline Send Email
Sep 16, 2008
5:23 pm

Hi, thanks for the info.  I have also had bladder augmentation surgery.  I have spoken to my urologist about a botox injction.  He said that...
mary cooper
mmchmc1
Offline Send Email
Sep 4, 2008
7:41 pm

I had the mitrafanoff with my appendix but that doesn't change my issue with my bladder. I have not had augmentation done. luckily but the botox treatment I...
Monica KamalRossa
xenarolls
Offline Send Email
Sep 5, 2008
12:09 pm

Danelle, Are you in a relationship and if you are how do the other person feel about it?  Sorry for being so bold but I always like to consider everything. ...
Liza Perez
lmp9107
Offline Send Email
Sep 16, 2008
11:56 pm

I think it is a great question. What do you think Danelle or anybody else? Have a great day! Monica KamalRossa <http://www.rossadigitaldesign.com/>...
Monica KamalRossa
xenarolls
Offline Send Email
Sep 17, 2008
12:20 pm

I was married. I got mine after I left my husband. I have since been with someone (whom I haven't seen in over 15 years) and he was very comfortable. He...
nellie sauers
danelle2003s...
Offline Send Email
Sep 23, 2008
10:22 pm

Hi, Thank you for your honest answer.    Liza ... From: nellie sauers <danelle2003sauers33@...> To: womenwithsci@yahoogroups.com Sent: Tuesday,...
Liza Perez
lmp9107
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Sep 24, 2008
12:29 pm
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