All about Guillain-Barré syndrome: GBS and sexuality, a patient to patient resource

English: This page seeks to bring GBS patients a collection of resources relating to "GBS and sexuality":

Please note that this is a serious patient-to-patient resource, and my role is solely limited to publishing emails received. I will respect requests for anonymity, but your name, address and email address HAS to be sent in or else your email gets tossed. No porn, please. No responsibility is taken for damage resulting from readers' use of advice or products published here, these are in no way endorsed.

Readers Comments & Real-life Problems

Where no email address is shown, please send replies to Webmaster, who will forward them.
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IVE GOT GBS. I AM 50 YRS OLD. I HAVE FOUND OUT I CANT GET A FULL ERECTION BUT ENOUGH FOR INTERCOURSE THOUGH. MY EJACULATION IS REAL SOON. MY SPERM IS MORE THAN NORMAL. IM NOT SURE IF THIS IS FROM THE MEDS I'M ON, OR THE GBS. MY WIFE WANTS ME BACK THE WAY I USED TO BE!
ANY INFO OR COMMENTS WOULD BE FINE. THANK YOU!
Bruce
10.2003

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Seen on the internet:
".... Upon return to home, the recovering Guillain-Barré patient can usually resume their prior sexual activity. Positions that minimise muscle exertion, such as lying on the back, may prevent exhaustion until pelvic and other muscle strength has improved. ..."

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Seen on the internet: GBS and my sex life (link dead - Webmaster)

"I had/have GBS since Christmas Day, 1996. GBS nearly took my life, and after spending 5 weeks in ICU with a tracheotomy, and on a respirator for 45 days, I was placed in a Rehab Center for 4 months. I was then released to come home. That has been 2½ years now.
I was put on a catheter when I was hospitalized, and was on it for about 4-5 months. When the catheter was taken out I urinated on the very first attempt, which is very good for a man. I could start the urination, but had just a bit of a problem stopping. But after about 3 or 4 times my bladder and urination process was back to normal and was feeling normal. After about 8 or 10 times I could urinate fine, and had the feeling of urinating just like before the GBS.

When I came home, and up until now, my wife and I have tried several different ways and positions of sex that we had never tried before. My problem is that I can not maintain an erection suitable for intercourse, and I do not have enough feeling in my penis to ejaculate each time. But each time I do ejaculate, I lose just a little more feeling in my penis and it is just a little more difficult to urinate.
At first I just thought this was a coincidence but now know it is not and I do not ejaculate any more in fear that I will end up on a bladder catheter for the rest of my life.
Today I cannot urinate while standing, and it sometimes takes as much as 5 minutes to urinate. And after I urinate I sometimes have the feeling that I still need to go.
DOES ANYONE OUT THERE HAVE THESE SAME PROBLEMS. I know this is very personal but I would appreciate any feedback from others. Thanks!"

Anonymous

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A young man with GBS once told me he needed to use Viagra. A new medication available now, Cialis, is said to work for 24-36 hours (Viagra works for about 4 hours). However, there are no indications that Cialis works in GBS patients, so please discuss this with your physician, who can advise you about sideeffects, contraindications and whether you can take this together your current medication.
Check the 'Products & news' section below for info on Cialis.

Webmaster
03.2003

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I have a question I can't seem to find the answer for. The Doctors seem to ignore the question.
My very good friend was burned badly on the hand as he didn't feel the pan that was burning him. His hand was numb, he was later diagnosed with G.B.S. He recovered with just slight numbness and tingling of hands and toes.
Our question is could the G.B. make a young man in his early 40s be impotent or have problems with maintaining an erection. We can't seem to get a straight answer. Thank you for any help with this matter.

Sincerely
S.K

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I feel that the subject up for discussion is very relevant, and am looking forward to learning from the GBS/CIDP patients who post experiences and problems here. If the patient can identify with the problems being described here, it will be easier for him or her to talk to a Health Care Provider and get treatment.
A few questions may help to "get the ball rolling" so to speak, here are a few suggestions for discussion her:
- Is the problem the fact that men experience erectile problems, or is the problem an inability to ejaculate?
- Does general weakness pose such a problem that it inhibits the patients' ability to have sex?
- What about the ability to achieve orgasms?
- What are the problems that men experience, what do women experience as problems?
- Are there special positions or aids or .... that are used by patients?
- etc.

T.B., Healthcare Provider
02.2003

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Products & News

Fotbollslegenden Pelé och Pfizer hjälper män med erektionsproblem [swedish] (link dead - Webmaster)
Football star Pelé is working together with Pfizer in an effort to heighten awareness of erectile dysfunction in Europe, Asia, Latin America and South America. The campaign seeks to encourage men to consult their doctor and seek help for this problem.

Cialis: Now Available for the Treatment of Erectile Dysfunction in Europe, Australia and New Zealand. Works for 24-36 hours, against 3-5 hours for Viagra and Levitra, allowing greater sexual spontaneity by letting men and their partners choose the right moment for lovemaking.

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Links

Sex and neurological disorders
Scroll way down the page that opens up.
eMedicine: Sexuality and disability
Looks at the underlying organic/structural, psychological, or relationship issues regardless of the disability diagnosis.
A Guide to Sexuality – Regardless of Disabilities (PDF)
National Information and Research Centre for Persons with Disabilities (UFC Handicap), Denmark 2001.
Dealing with Relationships and Sexuality
Psychologist Scott Berman on intimacy issues following GBS.
Bibliography: Sexuality and Disability
A cross section of available books and organisations dealing with disability and chronic illness.
Disabilities-R-Us: Disability intimacy and sexuality resources
Information, books, products.
Sexuality/relationships
For adults with all sorts of sexual orientations. Counselling, networks, etc.
The road to intimacy
About ..." women who struggle to build close relationships after a disability. Some obstacles are givens: feelings of loss and shame, awkward new beginnings and, usually, at least one bad match. But the road to intimacy doesn't have to stop there. Hold out, say the women who've gone further, for good sex and true romance"...
Love, Sex and Disability: Maintaining Interest and Intimacy
Disability and the Dating Game Today, Coping with Rejection, How Disability Affects Intimacy, Communication etc. etc.
Disabled sex
Discussion of issues associated with disabled sexuality. Registration required.
Gallery: Sexuality and disability
Photographic art of persons with various disabilities.

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Information in other languages

Fokus på: GBS & seksualitet [Danish-language]
Alt om GBS har samlet resurser om emnet her.

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