sexual dysfunction.... sensitive subject warning

[kathykush]

so I was wondering how you all deal with this... I assume it is ms related, but I have cant orgasm. all my life I have had a healthy sex drive, and now no amount of "stimulation" will get me there... as a matter of fact it is rather anoying feeling. so sorry if I ofended anyone... but ...thanks kathy

[Lulu54]

From the MS consortium fall 09 newsletter - a very good peer reviewed article about the problem of intimacy and lack of treatment options for patients ....

Development of a Group Educational Intervention
for Sexual Functioning and Intimacy Concerns in
Patients with Multiple Sclerosis

http://www.mscare.org/cmsc/images/journal/pdf/ijms_fall_09final1_107-113.pdf

[Lulu54]

There are excellent resource on line to learn more about this very common problem

http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/intimacy/index.aspx


I'm trying to remember where we found video presentations on intimacy and sexuality - these were done by MS nurses.  does anyone remember ?  These were very good talks full of suggestions on how to work on this.

If I can find them I will come back and post the addresses.

Lu

[keely36]

I haven't so much had a lack of interest in sex its just that I am already so tired that at the end of the day my husband is lucky to get a goodnight kiss. However, I also have had a problem reaching an orgasm. It takes forever or I just give up and we move on. One thing we have discovered is the new Arousal lubricants. They have really made a difference and it stimulates me and shortens the time it does take to reach orgasm. You can buy it at your local drug store or if you prefer to, you can purchase it online. It does help me. I hope this helps...

[jensequitur]

Paraplegic patients have different ways of attaining arousal and orgasm, so I've heard.  A couple of you mentioned sensual massages - the body's erogenous zones are being stimulated.  Arousal is more than just the naughty spot - ears, elbows, neck, lips, nips and more can all be stimulated to help things along.  

[Ufrustrated2]

per your link:

>>...it doesn't stop the myriad of the everyday MS symptoms that wreak havoc on a person’s sexual life, such as fatigue, muscle spasticity, pain, and mood changes.

couldn't have said it better although the spasticity issue hasn't hit me to any degree, though the others sure have.

glad the article mentioned the denial. i do that on and off and have for years regarding this. it is made easier when your doctor's minimize all symptoms you bring up over the years. thus the weight of mind wrestling with that type of denial.

communication is incrediably important, especially in this area for me. only two ladies i know have been quite open and respectful to me bringing up ms and some of it's issues regarding sex and lack of. you won't believe how many folks just dismiss it or do not believe me when i say i have ms.  va doctors do the same even with pos tests. now, when a lady does that, then sex is out of the question as my modd turns to defensive.  

the "hidden disease", gee, what a great way to explain it. never heard that before but how true.

i will add, long sensual massages help me. yep, my body is into that. takes and hour or two for my nervouse system to calm down and get receptive to it. if the lady and i can be on the same plane communication wise then we may get somewhere, otherwise my mind/nervous systems gets out of sync or something. that is, the sensual aspect i will lose interest in. hope that makes some sense because i can't explain it any better.

if all that goes well in a sexual encounter then i'll take lavitra. only thing the va has they tel me. it is no guarantee but when it works it does help if my nervous system is cooperating. does nothing for the mind mood though.

i've tried catuaba powder, maca root (imported quality), epimedium (genuine type powder) for the libido. sometimes it helps sometimes not. no doubt the mutual communication, the mutual attraction, and how my CNS is behaving are key to at least getting the torch lit. the other things might help to keep the libido in gear things flowing.  i also like live dancers for stimulation. but, if there isn't a bit of a mutual connection or something it doesn't do much along with i have to be feeling fairly well too.

which brings up a point of timing for us ms'ers. i honestly never really know how i will feel from day to day. when i'm feeling well, i know it will not be a consistent thing.  this has been a big issue with me planning to see someone and for dating.

then we have the va still telling me i am unspecified which f#$%s with my head. though they do it due to care rationing and disability issues, not genuine health care.  but it is a mental thorn that is a bit socially disruptive for me.  

case in point is your link in regards to that statement about self esteem. this disease has really lowered mine through the years along with i was told it was all in my head on top of the roller coaster ride of hidden symptoms.  so i have had that to deal with in my head along with the desires for sexual intimacy.  

communication & timing -- how the heck are we ms'rs going to nail this down! ?

so it is not always true when said, "where the mind goes, the body will follow". not for ms'ers

[Quixotic1]

JJ - Thanks, luv.

I found this gem in our Health Pages:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Sexuality-and-Multiple-Sclerosis-/show/609?cid=36

Quix

[supermum_ms]

Ok i'll put it out there, and yes my face is red lol

I discovered that i could get arroused and have multiple O's if i had a sensual all over body massage, i'd become hyper sensitive in my skin but nothing much in the g spot area.  

oh brother now i know why my husband keeps offering to give me a massage,lol!

Cheers........JJ

[Quixotic1]

I do know that the meds like Viagra are used in the difficulties with sex, arrousal and climax in people with MS.

What have any of you found that helps with this?  No desire is one thing that sort of solves its own problem, but strong desire coupled with inability is something else.  What helps you attain arrousal and orgasm?

Quix

[Ufrustrated2]

what, only women with this? i find that hard to believe. me, i'm a guy and this area has caused me to adapt to seldom wanting to date, etc.

lack of arousal is an issue. it happens at times, but on it's own time. that is, when i'm with a girl, it may or may not happen. more often not, thus the mind games of being less than.

orgasm sometimes can be more painful than pleasurable. weird to me.

i will take a  med to help out. sometimes it might other times no matter the stimulation nothing, notta

i never put it as a consequence with ms. it certainly isn't an AD med because for years i didn't take any and still had the same issue. i thought it was just my nerves. in a sense i guess i was right.

other body pains and the mental stamina dealing with that plus whatever else the mind is/isn't working on that i don't know about interferes with this part of my life i would say.

some times though, when the heavens and stars and everything else line up just right, everything is a go. but those are such rare times.

the mental stress i have in my mind of this issue is there when i am with a lady friend so that doesn't help matters.

the va gave something for libido but it was a no go. i still try it once in awhile thinking the magic will happen, but again notta. the va thinks it is due to cymbalta though i first brought up the issue back in the early 90's and was given viagra then. again it was a head case issue. you knoe the drill. i was so embarrassed and let down in my own mind about it, i just didn't pursue dating much. an adaptive measure on my part.

my mind has the  fantasies playing but like i said, other things aren't lining up.

doesn't bother me to talk about it. it isa big big fact of life's enjoyment and i so miss the spontaneity of it all. and it isn't my age as this has been going on for quite some time. maybe partly my age now, but gee,

i do have fond memories of a few wonderful relationships when the flowers smelled so bright.

[Udkas]

I just thought I would let you know that you are not alone with this problem.  I have had ongoing problems of numbness, nerve pain in that area for a long time, because of loss of sensation it has made it difficult for me to feel the normal arousal but I also think that if your legs are having spasms and your mind is else where it also plays a part and the more you worry about things like that the worse it gets. Sometimes I think the reason why I can't get aroused in because I get so hung up on it that I don't allow the mind to allow it to happen, I hope that makes sense.

My neuro asked me about my sex life when I was having burning issues and pain and I said "what sex life". so he knows, I am incredibly open but if you need help etc. that's what they are there for, I know where I live they have nurses that are trained in that area to give helpful suggestions etc.. i do take gabapentin but it didn't make a lot of difference to that.  I take vesicare for the bladder spasms and that has made a huge difference to my confidence and my sex life, but I am menopausal as well and I think that could also hold something to do with my sex life, but hey it's improved since I have had the Vesicare..

I also used to worry about wetting myself as I have had some big bladder issues and spasms that expel urine out, this bothered me more than anything else but if you have a loving partner who you can talk to openly about your fears etc. it makes it easier,  I once wet the bed, as we have a water bed and I couldn't get out quick enough in one of my urgency moments, boy was i embarrased, I cried and cried, but my hubby was great, i never did tell the Dr about that one.

Cheers,
Udkas

[Fluffysmom]

Me too!

I haven't discussed it with my neuro, but my PCP is well aware.  We even tried testosterone supplementation several years ago when my desire checked out.  I had to have it specially compounded, insurance didn't cover it, and it didn't help.  I did need electrolosis, lol.

I was still able to slowly get involved and acheive orgasm, but over the last couple years, stimulation has become uncomfortable, and orgasms are something other people have.

I really have no desire, and I used to have more than enough.  Nothing, no one, brings back that old tingle, though I remember it enough to miss it.  I do have love in my life, but I miss having the whole picture.

I suppose I should discuss this with my neurologist, too.


(another) Kathy

[Adnvwsti]

Kathy, as Quix put it, "me too!"  You are definitely not alone.  My sensitive husband realized I had checked out three years ago, two years before my dx, and when he sensed I was not responding the way I normally would have, he questioned me about it.  My doctor at the time had started me on Gabapentin/Neurontin.  He told me he believed I had a pinched nerve.  I now know he suspected I had MS and just wasn't willing to tell me yet.  Since Neurontin is for treatment of neuropathic pain, though, among other things, my husband and I made a huge mental leap and blamed my lack of sensation in that area of the body on the medication.  We just blamed the Gabapentin and decided it had robbed me of sensation while at the same time, easing some of my pain.  

When one has no sensation or very little sensation, the desire checks out too.  My husband of 11 years will always be the one great love of my life--I've had more than my fair share of men, good and bad, to compare him to, so love is not the missing element, as I can tell it's not the missing relationship element in anyone who has responded to your post.  For me, since I have no sensation and very little desire anymore, all I can do is try to remember that my husband does have desire, and then, I remind myself of how hard he is trying to understand what I'm going through and to support me and lovingly care for me, and that's motivation enough to try to meet his needs in any way I can.  But pain is certainly an inhibiting factor, too.

You know, this is the one sx that no one wants to admit to if they experience it, but I'm glad you brought it up, Kathy, and I, for one, appreciate all the compassionate, kind responses your post has brought out from Quix, Supermum and Jensequitur.  When the doctors ask what my symptoms have been of late, it's been easiest to respond with, "the whole laundry list", but now I'm going to be bold and stop minimizing.  Name it and claim it.  Maybe that's the way out of denial toward acceptance and a fully satisfied life.

[deborah0904]

Unfortunately, I am in the same situation.  I very rarely ever have the desire and arousal is a very sloooooooow process.  I have often wondered if there is a medication that would help in this matter.  I do have a spinal cord lesion.  I really feel for my husband.  I know this has to be the most difficult part of my disease.

[kathykush]

jj...desire, (arousal) is part of the isssue with me too, like you said not intrested....with me , my mind toys with the idea, but my body is on vacation...lol....I am sure like with my legs, I have lost it over the years. but only became aware of the problem when it didnt work at all. also I have been single for years, accually I broke up with my partner because of this.,.

[supermum_ms]

Hey Kathy,

I cant really say 'me too' exactly, cause i never get to a situation to find out if i could (lol), my issue is not having any desire, zip nada nothing. Even if the sexiest man came to sweep me off my feet, i'd be amused but not interested and its not something i or anyone else can re-ignite, the spark is long gone.

I lost it in my 30's and i'm only 45 now, we're not actually sure how my youngest happened. I've looked everywhere for my libedo, its not under the bed, i didn't put it away with my sexy undies, its gone and my feable brain just cant seem to remember where i've put it. lol

I think I lost it gradually over time, as my health started to slip away so did my desires, it really doesn't matter that i still look sexy, I just dont have those thoughts or feelings anymore. I use to have a very healthy sex life and then i couldn't seem to find enough energy to get started, i did try to fake enthusiasum in the first few years but gradually over time the days between visits, turned into years.

sorry not that helpful, just wanted to say i get where your coming from ;-)

Cheers......JJ

[jensequitur]

I don't think you have to worry about offending anybody... we're all adults here.  

Are you experiencing numbness in those very important areas?  

You might check your erogenous zones that aren't numb - elbows, lips, ears, neck, etc.  See if they still seem to be connected.  

What they've found is that even paraplegic patients can experience orgasm with stimulation of the numb areas.  They're not quite sure how this works, but they're assuming that not all the nerves are broken.  

Sometimes when you don't feel very good, it can really affect the bedroom experience.  Or even just nervousness or distraction can spoil it.  

[Quixotic1]

No one here will be offended at this.  If we never talked about the "delicate" parts of this disease, we would never talk about some of the most important parts of our lives.

Sexual dysfunction is a common part of MS either from direct nerve injury (CNS lesions) or loss of ability from spasticity or weakness or from loss of desire - also a part of the gray matter effects of the disease.  Also, the drive and the enjoyment can be affected by discomfort and pain.

Several people on the forum have commented on a loss of sensation in their perinuem and around areas that are usually the most sensitive.  This can lead to a loss of the physical arrousal from touch.

Thank you for bringing this up.  I know that others are having the same problems and have wondered the same thing.  Often people are afraid to bring it up fearing the same thing that you might feel; that it might be offensive or make others think oddly of you.  Quite the contrary, I have found that the most "sensitive" topics sometimes bring out the largest outpourings of "Me, too!"

I hope that this starts a good discussion.

Quix