How has SM/ACM affected your sex life ?

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How has SM/ACM affected your sex life ?

still good
40
34%
bareable
40
34%
pain
36
31%
 
Total votes : 116

Re: How has SM/ACM affected your sex life ?

Postby amber4949 » Thu Aug 19, 2010 12:56 am

Lol. I like that one, ChrisW. Good idea. =)
Chiari Malformation: 1 cm
Syringomyelia: 7 cm (C1 - C5)
Decompression surgery scheduled: 2/24/09
NS - Dr. Heilman Tufts Medical Center, Boston, MA
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Re: How has SM/ACM affected your sex life ?

Postby chrisw » Thu Aug 19, 2010 9:24 am

I hear the complaints and it sounds like many of us have the same issues, at least the females (the guys are too shy I guess).


Has anyone found anything that helps?


From a guy's standpoint, being able to rest on my back or side helps a lot! I can't enjoy anything the "old fashion way" because my back goes into spasm and lots of pain. Cialis takes care of the um.. occasional problems. I tried Viagra and it increased my BP causing my back to hurt A LOT and a bad headache too.
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: How has SM/ACM affected your sex life ?

Postby lavala » Tue Aug 24, 2010 2:59 pm

Before my injury, great sex life, after SM, sex has fallen to occasionally. I still enjoy oral sex but feel numbed. Not sure if drugs, depression, or just my performance anxiety. Yes, females would like for everything to "work" and feel disappointed when they don't. I've tried cutting back on my meds to see if this helps but pain is definitely a turn off. Sex is not spontaneous now and that seems to be part of the problem.

Honest discussion and a sense of humor helps!
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Re: How has SM/ACM affected your sex life ?

Postby karenb » Thu Sep 02, 2010 10:17 pm

Hi there!

Little miss "no sex life" popping in again :oops:

lavala wrote:females would like for everything to "work" and feel disappointed when they don't.


I'm not sure which females you're talking about... nothing "worked" for me when I was married (maybe because the guy beat me and had me terrified all the time).

Speaking as a female, I'm thrilled when someone is kind & courteous, and doesn't write me off because I have to use a wheelchair. (I'm starting to seriously think about have a T-Shirt made that asks "Does my wheelchair make my b##t look big?") I don't engage in sex now for religious reasons (I'm not married), but "performance" doesn't count for for much as far as I'm concerned - I really want somebody I can feel safe with and who treats me as a lady (yeah, yeah... I know I'm old-fashioned).

My point is: I'm not nearly as concerned about the form intimacy takes as I am that it exists.

Karen
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Re: How has SM/ACM affected your sex life ?

Postby princesk8 » Tue Sep 28, 2010 6:39 pm

My husband and I never had problems in this area, but shortly after I turned 30 I didn't have as much sensitivity down there. At first my doctor said it was due to anti-depressants, which I didn't even think I needed, but tried it anyways. When that medicine did nothing for my anxiety and just made me paranoid, she took me off of it and told me that by March or so of 2008, my sex life would go back to normal. Since I only took the pexeva for a few months she said it wouldn't take long for me to get back to normal, sexually speaking. Well not the case! Had doctors tell me it was psychological, they don't know why it's happening or why my hair is thinning etc, they basically wrote me off. Went to the gyno, nothing physically wrong with me. Even when I try to masturbate, it is very difficult to stay aroused or get to the finish line. Needless to say our sex life over the past 2 1/2 years has been dismal at best. It seems like there's not enough bloodflow in that region and doctor's don't seem to care too much about female sexual problems. Is this what I have to look forward to for the rest of my life? :cry:
Chiari 1 7 mm & Syrinx C5-T10. Scoliosis(22 degree L & 20 degree T curve). 2.4 cm Arachnoid Cyst at lower left occipital lobe. Bulging Disk C5-C6, C6-C7 & L5-S1. Early facet arthrosis L2-L4. Mild inferior foraminal narrowing L4-S1
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Re: How has SM/ACM affected your sex life ?

Postby amber4949 » Wed Sep 29, 2010 5:45 am

It's so frustrating how little doctors seem to care about our sex lives. I realize that there are a lot of other important things to worry about, such as getting to where my pain level goes down enough that I can work and have a normal life in general. However, being able to enjoy intimacy is also extremely important. Having any amount of arousal, even very minimal arousal, cause intense pain is not something I think that anyone should have to just accept and yet drs seem completely unconcerned with that particular problem.
Chiari Malformation: 1 cm
Syringomyelia: 7 cm (C1 - C5)
Decompression surgery scheduled: 2/24/09
NS - Dr. Heilman Tufts Medical Center, Boston, MA
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Re: How has SM/ACM affected your sex life ?

Postby NextNyc » Tue Jan 25, 2011 7:55 pm

Destroyed it,and because I developed symptoms in my late teens, doctors would refuse to talk about the issue with me. I live in a rural state, where CM/SM to most local docs is a matter of patients complaining too much about their pain and not manning up. I wouldn't be surprised if most rural areas are like this. I live in one that gets a large influx from NYC and still the rural values continue.
Another CM teen in my state was withheld from graduating high school because of her symptoms and they had to go out of state to get someone who knew anything.....
Syrinx C4 C6 with tail to T1; ACM 3 mm herniation. Symptoms=excruciating pain in arms and worse pain in shoulders & neck pain, the neck at min feels pressure filled and aches.Any position besides a reclined in Lazy Boy makes it worse
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Re: How has SM/ACM affected your sex life ?

Postby jgirl_75 » Thu Jan 27, 2011 10:03 am

I think depression and meds have affected more than CM/SM.
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Re: How has SM/ACM affected your sex life ?

Postby karenb » Wed Apr 25, 2012 9:29 pm

Hi again.

I just "rediscovered" this posting. While antidepressants do have an effect "down there", so does SM.

During my last "annual visit" to the OB/Gyn, I saw my doctor going to the sink to wash up, and asked her why she wasn't doing a pap-smear. Imagine my astonishment (and, later, horror) when she told me she had already done it - I felt nothing - not even pressure!

Just a little "food for thought".

Karen
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Re: How has SM/ACM affected your sex life ?

Postby Janice » Thu Apr 26, 2012 6:51 pm

I agree w/Karen, SM definitely affects "down there"! The entire area is numb for me which makes it difficult. Also, the tremors become violent making it impossible. My desire is fine, I want to have a sex life, but w/all the SM crap going on I can't. Be thankful if you still can, cause having the desire but can't is like having a horrible nightmare every night & it won't go away. It sucks, BIG TIME!!

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: How has SM/ACM affected your sex life ?

Postby amber4949 » Wed Jun 06, 2012 1:14 pm

I just wanted to say how sorry I am to everyone whose sex lives have been affected by CM/SM. My fiance turns me on more than any other guy I've ever been with but sex, or even arousal, brings on such intense headaches that we are only able to do anything sexual once every few months or so. I have to already be feeling good (which is rare) and have no plans for the next day or two in case it makes me really, really bad. It's absolutely horrible.
Chiari Malformation: 1 cm
Syringomyelia: 7 cm (C1 - C5)
Decompression surgery scheduled: 2/24/09
NS - Dr. Heilman Tufts Medical Center, Boston, MA
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Posts: 57
Joined: Wed Jan 07, 2009 11:11 pm
Location: Worcester, MA

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