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Post by peilynne on Oct 1, 2008 9:17:14 GMT -6
Okay, here goes. Julie from Ca had expressed concern about the feeling returning down there. A lot of people responded to her with their experiences and God bless all of you for your candid responses. I sent Julie a private email on my experience and what helped me, and ever since it has bothered me as to why I felt uncomfortable sharing that type of information with all of you. I guess, because sex was never discussed openly in my house, I'm very private about it. I haven't even discussed my situation after my surgery and now with my closest friends. I am married, so we've been able to try things out. After my surgery, for eight weeks, I felt nothing. Then a little feeling came back. My surgery was June 21 and I started going home on weekend passes from the hospital in September. At first when my husband and I had sex, I felt nothing. I had received a publication from the Canadian Parapalegic Association about life after a spinal cord injury. In it they suggested to use a vibrator for stimulation. It took a while, but it worked for me. Fifteen months post surgery, I now have about 85 per cent feeling back. I really think using the vibrator stimulated the nerves to come back. I apoligize if this post is too explicit for some readers but I feel it is an important topic and maybe my suggestion will help somebody and it was very hard for me to share this. We have lost so much because of my sci and my husband and I did not really want to lose this as well.
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Post by tc on Oct 1, 2008 10:10:31 GMT -6
Thank you for sharing that information that some feeling can come back. That is very encouraging. Dr. Jallo made it sound hopeless, but he must have been giving me the worst case scenario.
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Post by Joel on Oct 1, 2008 10:53:52 GMT -6
Lynne:
You are indeed a courageous lady, and I think it is great you are able to discuss this problem with everyone. This is also a problem for us guys, and fortunately, there are the little blue pills to help us out. I also find that keeping a light on helps, since I can substitue sight for feeling.
Joel
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Post by stevieray on Oct 1, 2008 15:12:42 GMT -6
I've been very lucky in this area, although initially I didn't think so. I'm pretty sure feeling has improved, its hard to remember just how difficult it was for a long time, maybe the first couple years. I was also using antidepressants which got in the way of 'finishing', and not take Wellbutrin which actually helps. I also find visual stimulation helpful. Unless its been a while it still takes far too long to finish and leads to frustration on both sides. Thanks for bringing this up. I think we do need to be careful about the language due to younger ones possibly reading this, or those uncomfortable with the subject. I do think its important to share about.
Steve
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Post by stevieray on Oct 1, 2008 15:14:26 GMT -6
I also used the 'silver bullet' and found that to be helpful.
Steve
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Post by paul55 on Oct 1, 2008 17:13:28 GMT -6
Lynne
Thanks for being so open with this discussion. I think many folks have the same issue. I too felt everything was working just after the surgery when I was told it was ok to resume sexual activity but over time, it has got worse. Neurological healing works in many wierd ways, sometimes making issues worse than better, then changing again.
Funny, if I touch my groin area, I can feel it at the bottom of my left foot! Wierd but true! Can't explain it, but I'm sure it has something to do with the nerves down there not getting the proper signals from the brain.
Anyway, for those who are not effected sexually, God bless you. You're lucky. For those who are, hopefully find a way to work around the issue. It does play an extremely important role in a loving realtionship.
Thanks for being so open.
Paul
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Post by Tmasgio on Oct 1, 2008 21:04:07 GMT -6
I am in the same boat as the rest of you. I have about 85% of the feeling return which still make sex very pleasurable as well as using my sight for excitement.
Paul,
I dont think that is weird that you feel your groin on your foot. I read about the plasticity of nerves. This means that your nerves re-wired themselves although not correctly they did sync up with the other nerves.
Tony
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Post by deirdre612 on Oct 1, 2008 23:08:55 GMT -6
You guys rock! This is one of the many things I love about this website, no topic is taboo! For what its worth, from someone who has very little residual effects from the SCT situation and surgeries, its a difficult situation no matter what. The feeling took a long time to come back, its not 100%, and for a time it was just 'too weird' for me. My body would respond like it was meant to, but it didn't feel the same or even remotely like it was meant to from my perspective. Luckily I have a very understanding husband! But over time the sensation improved, we worked out what was the best for both of us - we even managed to conceive two children post-SCT, so it can't be all bad!  The main thing is to be open to new ideas, its such an important part of who we are as human beings, if there is some way to work around any issues you may have then you need to try it. |
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Post by peilynne on Oct 2, 2008 6:51:36 GMT -6
I should add that if you are recent post op, you should check with your doctor before trying anything. At my rehab, different girls asked their doctors and the doctors had some concern that an "o" could cause some problems if their backs arched alot! I think it pertains more to patients who r recently operated on. One of the girls was pretty happy when the doc said her husband could bring one in, lol. And our doctor was an older lady in her late sixties. I don't know what she thought of us girls.So now u know how we all spend our time in Canada!
Another thing I wanted to mention is if you r going to try things you should hold off on your meds till after as they can affect "the process"
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Post by rugger8 on Oct 2, 2008 7:51:56 GMT -6
Lynne, Thank you for feeling comfortable enough to discuss this topic on the forum. I'm with you, this is a very hard topic to discuss but I figured that if you could do it then so can I!  After surgery I was completely numb from the pubic bone down to my toes. After a few days and weeks parts of me slowly started coming back but the area 'down there' did not. It was like a cruel joke, I had sensation up the insides of my thighs but nothing in between. Externally there was nothing but I have some sensations internally (thank goodness) It took a very long time for me to feel comfortable enough with my 'new body' to be intimate with my husband. (THANK GOD FOR UNDERSTANDING HUSBANDS!!!!!) It was very weird. I was there but it was like it was happening to someone else. Thankfully over time it has gotten a little better but nothing like it used to be. I wish that someone in the medical community would have suggested the use of a vibrater.... anything!! I'm not usually into that type of thing but man I would have been willing to try anything to get some sensations back. Now I feel like it would be to little to late. Sometimes this lack of sensation really bothers me but I just tell myself that I'm only 34 and stem cell research is still in it's infancy. In 20 years when I'm 54 (hopefully not that long) after my stem cell treatments....my husband and I are going to have the best sex life ever!!!!!! ;D Kristi |
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The main thing is to be open to new ideas, its such an important part of who we are as human beings, if there is some way to work around any issues you may have then you need to try it.