[lady_express_44]

I know this could be an awkward discussion topic, but I am struggling with it and hoping to learn some tricks of the trade, so to speak.

Are there many here who have experienced complete numbness in the nether region? Did you recover eventually?

In about 4 of my spinal lesion attacks, I have become completely numb down below, with extreme sensitivity to touch. The amazing part is if I can get past the pain and other unpleasant sensations (sometimes you just gotta', if even just for your partner), I do ultimately "finish". However, even that sensation is not all that pleasant either.

In my most recent attack, I was numb just to the pubic area, but not internally. This was more tolerable, but still not very pleasurable.

I know this can be a very long-term problem too, not just lasting several months as it has each time for me (so far). Has anyone ended up in that situation, and do you have some coping strategies, ie. in a relationship, you probably can't just say "no more, ever".

I imagine this can be a problem for men too, and even though they can use viagra, isn't it painful?

There other things just as important with intimacy, but when you are numb and hurting everywhere, I find any "closeness" very uncomfortable.

Any ideas or thoughts?

Cherie

[Friend2U]

Cherie,
I hope someone can help answer your question. I haven't experienced this yet, other than a minimal amount of numbness, but just kinda on the surface. I keep wondering when this is going to happen to me??? .... you know, thinking, could this my last time????

Hope you get some answers or at least someone who can relate to your situation... maybe someone out there is as brave as you and can talk about it. You are always to helpful to others. I know someone will return the favor!

[slskckjebw]

I have had lack of sensation. I can not call it complete numbness, but probably close. I also have bladder problems. Mine is also external.

Mine comes and goes. I have paid close attention wondering if it was cycle related and it is not. I have had times when touch is very unpleasent, painful, sometimes it feels like I am being stuck with a pin cushion.

I have noticed it does seem to go along with the times I am having more trouble with sensations in other areas of my body. I know hormones can cause problems, but mine are ok.

MS is affecting my vision and lower body. Seems like it is related, but I don't know for sure. I am also interested in hearing what others with MS have to say.


LA

Originally Posted by lady_express_44

I know this could be an awkward discussion topic, but I am struggling with it and hoping to learn some tricks of the trade, so to speak.

Are there many here who have experienced complete numbness in the nether region? Did you recover eventually?

In about 4 of my spinal lesion attacks, I have become completely numb down below, with extreme sensitivity to touch. The amazing part is if I can get past the pain and other unpleasant sensations (sometimes you just gotta', if even just for your partner), I do ultimately "finish". However, even that sensation is not all that pleasant either.

In my most recent attack, I was numb just to the pubic area, but not internally. This was more tolerable, but still not very pleasurable.

I know this can be a very long-term problem too, not just lasting several months as it has each time for me (so far). Has anyone ended up in that situation, and do you have some coping strategies, ie. in a relationship, you probably can't just say "no more, ever".

I imagine this can be a problem for men too, and even though they can use viagra, isn't it painful?

There other things just as important with intimacy, but when you are numb and hurting everywhere, I find any "closeness" very uncomfortable.

Any ideas or thoughts?

Cherie

[slskckjebw]

I just checked the MS web site and it says sexual dysfuntion is very common for people who have MS...

LA

Originally Posted by slskckjebw

I have had lack of sensation. I can not call it complete numbness, but probably close. I also have bladder problems. Mine is also external.

Mine comes and goes. I have paid close attention wondering if it was cycle related and it is not. I have had times when touch is very unpleasent, painful, sometimes it feels like I am being stuck with a pin cushion.

I have noticed it does seem to go along with the times I am having more trouble with sensations in other areas of my body. I know hormones can cause problems, but mine are ok.

MS is affecting my vision and lower body. Seems like it is related, but I don't know for sure. I am also interested in hearing what others with MS have to say.


LA

[Snoopy]

Originally Posted by lady_express_44

.....but when you are numb and hurting everywhere, I find any "closeness" very uncomfortable.
Cherie

Same here, Cherie

I have had numbness in the nether regoin. The numbness will usually show up with an exacerbation but I have had numbness without any indication of an exacerbation.

Like you the numbness has never been permanent although it has made intimacy difficult at times. I am fortunate to have a husband who is kind, understanding and compassionate. We have been married for almost 27 years and together for almost 29 years so he has been with me longer than the diagnosis.

He also has problems with being intimate when he knows I am having issues in the nether region - he doesn't want to cause me more pain or discomfort.

If numbness became a permanent symptom? I don't know how we would handle the situation but I do know we would support each other to the best of our ability. I say "we" because even though I am the one with MS this disease affects him also.

I have experienced sensory pain along with numbness off and on since this last exacerbation however being intimate has actually been quite nice - I would have thought being intimate would cause more pain and discomfort but there is no pain or discomfort while being intimate - go figure. This is just one strange disease.

[cricket52]

Although I don't have a dx that has been a major symptom. It was a bit more subtle, I just lost all feeling in that area - no pain or sensitivity to touch. I was inorgasmic for several years.

Eventually some feeling returned, it just hasn't been the same.

After my separation 3 years ago it hasn't been an issue because I don't have a partner, although I have experienced a buzzing feeling (numbness and tingling in that area) and my bowel has been incontinent for over a year.

Admittedly the numbness in that area and the discomfort from the spasticity did little for my marriage. But at my age, neither did menopause.

[lady_express_44]

Thanks, friend. I don't know that there are a lot of us that have experienced this particular scenario, possibly because it likely only effects those with active (or previously active) spinal lesions. Fortunately a lot of people with MS don't ever face that . . . so hopefully you will stay in that group.

LA, I think sexual dysfunction is fairly common with MS, but not as much for the reasons I am experiencing. Fatigue, pain (in all areas), energy, dryness, moods, etc. . . . might all contribute to a lack of interest too. I think that perhaps the longer we have this disease, the more likely we could be to face these issues, although that is probably the luck of the draw too. My very first "known" attack included this paralysis and pain, and I was in my prime (age 31) at the time. It's been an intermittent problem for quite a while.

Do you notice other symptoms at the same time as the numbness there? It may be that those are times that you are going through an attack.

Thanks Snoopy . . . I thought this might have been an issue for you at times, since our disease process (and length of time with it) seems to be fairly similar.

My guy is patient as well, and also is very caring about the pain it can cause me. I hadn't ventured into a relationship for several years, partially for this reason. I still feel bad about it though.

Hi Cricket . . . nice to see you.

Yep it effects my bowels too, as you may recall from our prior discussions. I don't have the incontinence any more (that was a problem for years, with UC), but now the problem is the opposite. I did take to heart what you told me about that, and I am working hard at ensuring I do not leave this problem for lengthy periods . . . whatever it takes.

It is hard on a relationship, perhaps moreso with both "bottom" issues. If it's not one thing, it's another . . . so it takes a special person to be complacent with those obstacles. I wish I could be.

Thanks, Cherie

[CayoKay]

I have that problem.

it cropped up last summer, when I had a TN-type flare.

I had the netherworld-numbness before, and it went (mostly) away.

but THIS time, well, it's been 8 months, and it shows no signs of leaving.

I am grateful that the plumbing still all works, and the area lubricates properly, but I am unable to achieve orgasm with my husband, during intercourse.

our solution is to use a vibrating device (a cordless, rechargeable massage unit), which DOES still punch my ticket, so I get my desert first, and he gets his fun afterwards.

we've also had to adjust our positions, as my legs spazz out totally with the standard Missionary position... wang-chung go the hamstrings, and the calves go WAH !!

for most people, having MS needn't be the end of a happy sex life, one just must keep making adjustments.

and good communication with your partner is the key.

oh, and towels, lots of towels... and maybe even a mattress protector.

fear, worry and tension can stomp out even the biggest flame, so, plan ahead.

[slskckjebw]

Having an illness and a house full of children and responsibilities does kind of suck a lot of interest out of a person! The Ms fatigue, vibrations, pain, discomfort......When my head hits the pillow I am OUT. I could stay in bed and sleep all day if someone would let me. Not to mention side effects from several medications I am on.

Yes, I do notice other things going on at the same time. When I had my first bout of ON last May I noticed a huge change in how my entire body felt. I had a lot of odd sensations. I think the heat of the summer made things worse. I started to improve and then I had another bout of ON and then my dx.

The Avonex is really making my life difficult right now because of the side effects. I have about 3 good days during the week. The rest of the week I am dealing with side effects.

I hope things start to settle down once I get used to the Avonex. I just took my 4th injection this week. The stress and busyness of my life sucks the interest right out of me. The lack of sensation makes it even worse.

I do have hope this will pass again like it did before. Thankfully there is not total numbness.

I do have bladder issues. Bowels issues also. I have spent the last 5 year of my life adjusting my diet, losing weight, making changes here and there trying to deal with my bowel issues. I was determined to figure out why I was not feeling well and fix it. I have times where I could not imagine having to live another 30+ years feeling the way I do. My body is not well.. I have a dx of IBS after going through some testing to see what was wrong. My doctor actually thought I had Chrons and then possibly Celiac.

Then there are the hormone changes I am sure I am starting to experence being I am about 6 days away from my 45th birthday. No wonder Ms is so hard to DX!!

He first mentioned the possibility of MS back when I was going through the tests for these other problems. He was hoping one of these two would show up because they are a little easier to dx than MS in certian situations.

So, anyway. It all has to be tied together....I think.

LA



LA, I think sexual dysfunction is fairly common with MS, but not as much for the reasons I am experiencing. Fatigue, pain (in all areas), energy, dryness, moods, etc. . . . might all contribute to a lack of interest too. I think that perhaps the longer we have this disease, the more likely we could be to face these issues, although that is probably the luck of the draw too. My very first "known" attack included this paralysis and pain, and I was in my prime (age 31) at the time. It's been an intermittent problem for quite a while.

Do you notice other symptoms at the same time as the numbness there? It may be that those are times that you are going through an attack.

[Jensequitur]

I have patchy numbness in the nether regions, and it does affect things. It takes me a lot longer to get there than it used to. I think perhaps the touch nerves are broken, but not the sexy nerves? It's fortunate that I have a patient and loving husband.