Physical Changes and Improving intimacy

[Joseph C]

Having had a cervical ependymoma, I know first hand the physical limitation and changes we have from the resulting deficits.we often discuss how it affects major life activities such as walking, writing, etc...but we are all adults here and sex is a very important part of life which fulfills us in many ways. For the men out there especially, have you had problems 'performing" and has medication like Cyalis helped? Has sexual function improved overtime, after that two year mark or beyond?

[drummer904]

I have been waiting for this subject to pop up in here, i havent hit the 2 year mark yet so i haven't said anything but am curious about this area if life for others also.

[ScrapHeap]

I also believe this is a most worthy and valuable subject for discussion on this forum. I have zero problems discussing the topic in forum, on phone, or face to face. I am also quite comfortable discussing it in mixed company. HOWEVER, I would probably think it's a good idea to get forum admin approval and/or guidelines beforehand. I would not like to offend those on this forum who do not feel it is appropriate or those who see their personal/private acts as out of bounds for open forum discussions. I say that for a few reasons that come immediately to mind. One being those on the "prudish" or reserved side (which immediately kicks me out of that club). I am also thinking I do not want to add to the frustrations for those having more severe sexual issues as a result of sct's.

If the admin(s) are OK w/this topic, and the somewhat potentially "risque" responses, maybe put a subject matter warning tag on it?

Personally, I find it is easier to ask for forgiveness than it is to get permission. I'm fine with complete lack of censorship on the subject. But it isn't about me. It would be a shame to have useful information for those seeking it get pulled along with the post due to what might be considered too descriptive. It's probably best to have the admin(s) set some ground rules or tell us there really are none.

[RobertG]

Feel free to write about this topic. The subject has been brought up before on the old forum and openly discussed at past SCTA conferences and teleconferences. See the Sex Therapist interview (Click the "teleconferences" link at http://www.spinalcordtumor.org).

[Joel]

I will respond here too, to say that many of us, both male and female, have sexual intimacy-types of problems. It is easy to understand why, when you are numb "down there". So, you must work through this thing too, like all the other things, and yes, pills like Cialis also help. Did I say enough without getting too graphic?
Joel

[Tmasgio]

I am okay in this area as I can perform as I did before and really have enough feeling for it to be enjoyable just the same. The first time after surgery was a shock and I question wether I could get past it but all in all it is still fun and exciting and I use what is left to the best of my ability. I do know that even when there is not alot of feeling we do have other points of stimulation on our bodies. I think it is just a matter of exploration.


Tony

[mak164]

I started with my SCT when I was a testosterone charged youth, aged 15. The resultant paraparesis and pain relegated anything sexual not of immediate concern for a couple of years.

Some months after surgery I was pleasantly surprised to find that an important part of my anatomy had woken up, though, as with most of us, I was left with saddle anaesthesia.

When I first became involved in sexual relationships I did find difficulty in having an erection, and sought medical help, only to be thrown out of the surgery as I wasn't married! However, as youth does, I persevered, and basically the answer I found was that sex is in the head. If I cared enough about the person, then we could have a fulfilling sexual relationship. And that's how it should be.

Because of the radiotherapy I didn't expect to be fertile, but three children proved me wrong. The first one was a great surprise, but led to a very happy marriage.

I suppose what I'm trying to say is - love conquers all.

David.

[ScrapHeap]

I would love to hear from some specialists in this area. It would be great to hear their explanations as to where, when, how and why. I have only heard the generic canned responses. "That should get better/improve to some degree over X amount of time." Sans deeper professional input and/or opinions, I offer my own personal experiences as those above. Hopefully it will be of some use to someone and not put them to sleep.

A period of time before my diagnosis (can't pin it down to a specific date) I noticed diminished sensitivity at the area of my manhood. I recently had surgery to get fixed and ignorantly chalked it up to that, figuring it would go away. It never did. But after a period of time I guess I got use to it. It didn't seem to affect my desire or performance...... for a while.

After a while I began having other issues related to the sct growing. Along w/those came the untimely popping of the proverbial cork. That had never been an issue in my sexual endeavors so naturally, it bugged me. Again, out of ignorance, I ignored it, dealt w/it in my own personal way, and accepted it. It didn't diminish my desire or performance in any huge way.

Post surgery, I felt nothing for the first 2 days. On day 3 I noticed I did have some feeling there. But geez was it weird/different. Over time I have regained a slight bit of feeling in certain areas. More like very specific areas. Which to me is also weird/different. I am just a couple weeks short of 2 years post op.

It seems like what I have lost in external sensitivity/sensation I have gained internally. Again, in very specific areas. Seems to be true for the feet, bowel, bladder and mi amigo. Hypersensitivity is probably more accurate. I have had to learn to work WITH that, sexually, as opposed to it working against me. And while my initial cork still has a case of the short fuse most times, I am also able to light multiple fuses. Almost always 3, sometimes as many as 5 (a man has to know his limitations) ;D It is way different in all aspects compared to "normal." But with time I have learned to work with it and it definitely is working for me and my wife. According to her it has no down side and all up sides w/respect to her satisfaction. To me that is far more important than X amount of external feeling.

In the end, I guess it is really not a lot different, in practice, than it is for many normal couples. You need an understanding partner that you genuinely care for and about. And if ol faithful isn't working for you then there are other ways to skin a cat. As mentioned by David, sex is mostly mental. If you're into your partner emotionally then it is easier to generate satisfaction for your partner and yourself.

On the more risque side, I'll illustrate a real example of an understanding partner. That being my wife. I found this to be a hoot. It tickled my funny bone. Others may not see the humor. Even so, hopefully they can see the genuine support within.......

I had THE discussion w/my wife the night before surgery and shortly after a ceremonial "last romp." I brought up the disturbing (to me) fact that we might never be able to do it this way again. I.E., I may be immobile from the waist down and/or mr. happy may never again jump for joy. Without hesitation she looked me dead in the eye and said "You don't anticipate your tongue being broke do you?" I busted a gut laughing. The response was so immediate. So direct and to the point. So obvious (that part of our sexual relationship is a stainless steel staple). So true. Yet hilarious (to me). Mr. Happy never was at the top of the A list for her satisfaction. And I knew that from day one. Her cut 'n dry humor just drove it home like a spike through a Kleenex.

[rubestr3]

Even though I'm a chick, i love this thread! It's hard to get it through a new partner's head that you might have to approach the act in a more creative way. I'm a different animal, saddle numbness is a fun one! You're right, in love and understanding, you will come through this. (Oy! no pun intended!)

[went]

One problem I have is that I want it constantly.

Which is actually still the same from pre-surgery.