Ok, I'll go first on the subject of sex

[Mystonia]

I am 40 years old and 10 months post surgery from intramedullary ependymoma C1-T2. Since surgery there has been some loss of sensation in the vaginal area. Due to medications my sex drive is next to nothing. Fortunately my husband is very patient and understanding and doesn't push the "issue". When we do have sex it isn't satisfying for me because of the loss of feeling. I haven't the heart to tell my husband as I don't want to hurt his feelings. I know it isn't him, but who wants to hear the 'it's not you but me' speech. Has anyone else experienced this? How have you dealt with it?

[tc]

spinalcordtumor.proboards.com/index.cgi?action=display&board=general&thread=400&page=1

There was a thread on this subject called:
Sensation "down there" which was started Oct 1, 2008 (in case the above link doesn't work)

[guest]

Dear "Mystonia" -
I think that my husband was relieved to hear from the neurosurgeon that my SCT experience could cause loss of sensation in the "saddle area". He said, "Well, that explains a lot!" I still enjoy being held and body/feet massages, but I really don't feel much in that particular area! There's a song in the Broadway play, "A Chorus Line", called "I feel nothing" . . . and I find myself singing it. But eventually you come to accept things and find enjoyment in other ways. I would discuss it with your husband and let him know that your body isn't the same as it was in that particular area. If I were a guy, I'd rather know. As a wife, I assure my husband that I would never deprive him of that aspect of marriage, even though it isn't the same for me.

[LynnD]

Don’t give up!!

I also have sensation issues in the saddle area. I went at least a year without an orgasm prior to my surgery! I didn’t tell my husband for quite awhile. I regret that b/c sex was so much better afterwards. In many ways it’s better b/c we pay more attention to each other.

I have to recommend a vibrator or other item to stimulate the clitoris. My hubby is many things but he doesn’t come with batteries! Also try some of new KY products to help stimulate. This helped us a lot. It gives me the bog ‘O’ and he participates in that too.

Sex after sct can be different but just as rewarding. We often say we needs to get used to our ‘new’ bodies after sct but for some reason we don’t extend that thinking to sex. We find new ways to do other things…sex should be no different. We looked at this as a new opportunity to learn each others bodies again and just have fun!

So, talk to your partner, check out the web for toys (do it together, might get you in the mood!) and you can always check with your doc about what might be suppressing your sex drive and changing meds.

[lw]

I can relate to what many of you are saying and understand your frustration! I had my surgery 19 months ago and was unable to orgasm for about a year. I had virtually no external sensation whatsoever. I've found that the more you practice the easier it gets as the feeling has returned for me. I never thought it would so I'd advise people not to give up.

[stevieray]

I had this problem for a long time after my surgery. Gradually I was able to feel more, but it usually takes me a long time and often need manual stimulation to finish. I also need a week or so to recharge. I did find that my anti-depressant medication was making things worse as well as cholesterol meds. I switched to Wellbutrin or Buproprion for depression and this actually helped in this area vs negative affect.

[coolrush]

Good to hear that I'm not the only one. I was wondering. I had surgery a couple of months ago and I have absolutely no feeling on my right side or down there. I can't even tell where my husband touches me if it's on the right side. It pretty much sucks... I can't have him try to stimulate other areas because of the vibrations and nerve pain. Our sex life has gone from frequent to not very often at all. I feel bad for my husband. He understands, but he is still a man. I'm wondering if my anti-depressant isn't working against me also. I'm taking zoloft. I just have almost no desire to have sex.
Anybody else have the nerve issues too?

[chefpto]

Zoloft is one of the worst antidepressants for loss of libido.I took it before and my libido went kapoot!! Trazadone is one of the antidepressants that does not interfere with your sex drive at all .Thats the generic I think the real name is Deseryl.I am taking that now with no issues but understand fully about your problem.
i find sometimes if I take a nice relaxing bath or shower before hand it makes it easier when I am stress free and not worried about disappointing my spouse.

[Deborah]

If your NS hasn't referred you to a specialist doc in sexual dysfunction, they should. You don't have to just accept it. There may be things that can be done. In my case, doc just told me today there is, and pretty simple "cure" (though will require medicine for the rest of my life). It's embarrassing, but what haven't we dealt with already that could be worse? ;-)

[tpowell5497]

I have loss sexual sensation. I didn't tell my husband for a little while that I couldn't feel anything when having sex and was unable to climax with him. Eventually I had to tell him and now he is ok but he still tries. Bless him.