dare i inquire about sexual disfunction?

    • Anonymous
      August 3, 2008 at 7:28 pm

      i hope this isn’t too personal a subject– but i am addressing it from a thoroughly medical perspective–

      since almost the beginning of the onset of my cidp, i have been anorgasmic. i spoke to the neurologist about it and he passed it off as a psychological manifestation of worrying about my health. i think it’s physical– simply put, i feel/believe, that ‘those’ nerves are not functioning in the ways they need to in order to be sexually functional.

      i wondered what other’s experience in this regard are– if you would prefer to send my private messages/emails, that’s fine. my sense is, however, that i am not alone in this.

      thanks for your openness,
      alice

    • August 3, 2008 at 8:45 pm

      You are not alone and your neuro could learn a thing or two. Not everything is in our minds…wonder why some of our dr’s aren’t psychology majors?

      Anyhow, When I was first sick I had no feeling. None, nada, zip. It has gotten much better, but there are times when it is harder to “get there” than others.

    • Anonymous
      August 3, 2008 at 8:47 pm

      i appreciate hearing that– i have had the same feelings you describe.

      thanks for being courageous enough to respond–

      alice

    • Anonymous
      August 3, 2008 at 9:44 pm

      Alice, you are not alone! This disease/syndrom has taken many things away and not given them back, luckily some things have returned. Not as it used to be but I can walk, talk and eat but my “go” button is gone. I talked to my gyn about it and he said there wasn’t anything he could do, I’d just have to wait and see if it returned.

    • Anonymous
      August 3, 2008 at 10:08 pm

      yep, it’s all numb. there’s no mind over matter on making the joy button to work. trust me, it’s not the lack of effort solo or with a partner.
      i’ve not really mentioned it to my doc, but i think that i may just to see what type of response i get to the question in general.
      peace,
      flower

    • Anonymous
      August 3, 2008 at 10:30 pm

      [FONT=Georgia]I just saw this & I wanted to add something to it, my wife was left disabled by the GBS in June 2000 & also suffered from CIDP. Her entire ability to have any kind of sexual relations was gone & if anyone thinks I messed around on her they are totally wrong. In fact her neurologist told her if she did have any kind of sexual intercourse it may well set the GBS back in on her. The neurologist that diagnosed her was from Russia & she was very good. She was also very protective of my wife. [/FONT]

    • Anonymous
      August 3, 2008 at 10:32 pm

      ๐Ÿ˜‰ [FONT=Palatino Linotype][SIZE=3] Hello Flower I’m glad to see there is someone else on here from Ky besides me. [/SIZE][/FONT]

    • August 3, 2008 at 10:54 pm

      Dustdemon….why would intercourse flare up GBS?

    • Anonymous
      August 3, 2008 at 11:12 pm

      [FONT=Franklin Gothic Medium][SIZE=3]I think her Neurologist had one other patient at one time, that had that happen to them. Like I said that Neurologist was very protective of my late wife. From what I understood something about the intercourse triggered something in that persons body & a short time later the gbs set back in on the person. [/SIZE][/FONT]

    • Anonymous
      August 4, 2008 at 12:40 am

      I have never heard that abour intercourse causing GBS to return. After 8 years of CIDP, I am still orgasmic and I’m also 60. But I miss the intimacy, snuggling, whispered ” I Love You “, too. The messages, showering together, candlelight, all are preludes–the worst problem is getting two people that feeled rested and that really don’t hurt and really don’t have a headache and can go slowly building up to passion. say what you need or what and go from there.
      Emma

    • Anonymous
      August 4, 2008 at 7:00 am

      From what I have experienced and I have talked to my Doctors that are CLUELESS in this department. “I can not do anything about” it is not the answer I was looking for either. I am willing to do something about it myself to keep my partner in my daily life. I made sure I got a back rub each evening and gave one. Thank you to my caregiver become daily Hugs and Kisses. A pat on the back and a short back rub was also in order as we passed in the hall to let him know I still cared. A poke and a pinch was playfull, but they were also part of the daily events. It was like a game! We added humor to our daily courtship. Loving become more than the actual act. We have turned a leaf in our lives that we have overcome. Actually, I found he does have a very romantic side after all these years! So when we do try and get together if we are not sucessful we still have the rest of the experience to keep the flame going. I speak from 35 years of marriage just this past July! I am not able to swing from the chandlier yet but I am still working on it. Don’t give up just find what works for you. I have thought about getting the creams available just for fun but have not done that yet. It is just nice to have some of the pressure gone to always have to have a big event each time we are together. As the nerves heal and sensetivity comes back then I feel I will do much better, but intil then it is like starting all over with a partner I love, to see what works for us. He had a stroke so we have worked thru this before and now he is having patience with me! Hang in there and don’t let this be a stressful situation in your life. We have all been there!

      PS and I have not told anyone this here before. I must be doing something right he bought me a Classic 1985 Corvette for my 35th Anniversary and every Sunday night we think of a reason to take it out on the road and be kids again! I drive ๐Ÿ˜Ž and he sits there with a big smile on his face! ๐Ÿ˜€
      We even celbrated when we used up our first tank of gasoline! Life is good! Last night it was a trip to McDonalds for a late evening Big Mac, Fries and a Coke! We got an invite to bring our car to their Car Cruise! He was all interested until she said that he should bring his dancing shoes! He does not dance!! So in one mintue she talked him into it and then bursted my bubble by telling him that! Talk about TOO MUCH INFORMATION!!

      Now if I only could figure out how to post a photo of my new car here!

    • Anonymous
      August 4, 2008 at 8:56 am

      I remember when I was much younger being quite a Horny Toad! ๐Ÿ˜€ Loved having intercourse with my husband. As soon as my illness kicked in, something died and it has not come back to life yet! Let’s just say I try to please me husband because he still has the needs. But when it died on me, I just have no urge what so ever. I could go forever and not have the urge. So I do believe many of us suffer from this issue.

    • Anonymous
      August 4, 2008 at 9:35 am

      I am not sure that they meant it will cause or make the GBS come back. I think it makes you so tired like over exercising that you might have your residuals kick up or have a set back the next few days for over doing it.

      Remember that not only the nerves but GBS also effects the organs and hormones are not in balance like everything else so you are fighting that along with the fatigue and not to mention some of us are older and decreased hormones before the onset.

      Lets face it our whole body is effected and all systems take a punch from this illness.

      I would not hesitate to contact a specialist if I needed to find another way to be fullfilled. You owe it to yourself and to your partner. But I think if you have a good partner they will listen to what you need and you both will find a way to communicate. They might even think it is their fault. Make sure you tell them what you are going thru and what you are feeling. Experiment!

    • Anonymous
      August 4, 2008 at 10:13 am

      i sure wish doctors were a little more well-rounded or holistic… my neurologist is an expert, even a genius when it comes to neurology– i’ve asked him about diet, supplements, sexual dysfunction, my elevated blood pressure– he seems unable to deviate from his very specific specialty… can anyone say allopathic?

      i remember a time when you never questioned a doctor– he/she was the expert, period. i thinks its good that most of us now know that we have to be our own advocates when it comes to our health, to collaborate and participate– its so much more empowering then handing over your body in blind trust.

      sorry for the ramble– hope i’m not pontificating…

      again, thanks all–

    • Anonymous
      August 4, 2008 at 1:37 pm

      I am so glad this was brought up. It is of course very personal but needs to be talked about. So far only women except one male has mentioned this. But as a caregiver I am seeing it in my husband. He at first had trouble urinating and now this. I tried to talk to my daughter about it and she got mad (she wanted to have an update and I released that info. She did not feel it was connected or just did not want to hear it. So I am glad now that it has been brought up. I felt bad for him as it does make him feel inadaquate. He will not ask a doc about it, so I did. The neuro should have brought us more info rather than pass the buc onto our family doc. He also did the same thing when it came to asking what to do if my husband got sick while on imuran and prednisone(ended up getting sepsis from being sick 2 times) He said go see your family doc if he gets sick. and then he wondered why he got sepsis(blood disease-white blood count was .6 when I took him to hospital)

      Back to the subject: For a male that has to be very hard and of course at first I felt it was my fault. He said he does not even have the desire. Well I said that it’s ok. He is not very affectionate anyway but I told him he still had two arms to hug me. I always have to make the first move but that is ok. I really do feel he will come back in time but I will still try and show affection even if it is just a hug or kiss. It just upsets me very much that docs do not truely help on the subject. Family doc gave him some pills but they did not work either. and unknown to me he had already tried this pill before and doc must have forgot. Husband should have told him.Husband just will discuss it. I will definately ask when we get that 2nd opinion at Cleveland Clinic. It is so hard to do but I will ask

      Thanks for bringing this up.I do not really think it is all psycological (sp?) but it is physical and somewhat a mind set to some degree., but not what is causing it. I mean we really do have nerves in other places.Dah And I do not agree that it will start another episode. Maybe that doc just was letting her in some way that it was ok to not try so she wouldn’t feel so bad about it.

    • Anonymous
      August 4, 2008 at 2:20 pm

      Kit and Joan and Alice and everyone-I reread all the posts, and I do agree that sexual dysfunction has to be physical and then becomes mental too. As we age our sex function becomes dysfunction too, age plays a part, look at how our illnessess have affected us too. Men suffer their own issues with ED. But I liked how you said it Kit and I didn’t put it well the first time. Being widowed for 7 1/2 years now, I miss that part the most, my partner in life. I have dated the last couple of years but dealing with my cidp puts a different stress to dating-I hate that feeling of having to perform, sometimes it works and most of the time it doesn’t. Marriage to me has always meant commitment, a continuous courtship, a romance, and best of all a friendship. And I too, Kit, had nursed my husband through 7 major surgeries in 11 years of marriage and 2 years dating. That is a lot of stress. And the last year was hell for us both. But one thing we had, like you and your husband had Kit, was touch. And when I read your posts, that’s when I realized that’s what I miss the most. Yea sometimes I can still have an orgasm at 60 but I really hate the dating scene-somehow the fun of it all is gone. I miss the intimacy and security of marriage. And I miss holding hands and the passion and I miss my friend.:(
      Emma

    • August 4, 2008 at 3:45 pm

      Hey ladies,
      My friend (no not me!!) has a problem with feeling, she was given a cream that intensifies the blood production and increases the feeling, she got it from her gyne.
      Dawn

    • Anonymous
      August 4, 2008 at 4:17 pm

      Ok Dawn, ๐Ÿ˜ฎ now that you’ve gotten our attention…find out the name of that cream! Haha! My gyn said there wasn’t anything he could do. If it’s a prescription, I’ll enlighten him. If it’s otc, I’m gonna run right out and get some ๐Ÿ˜€

    • Anonymous
      August 4, 2008 at 5:07 pm

      yes, i have some. it was prescribed by my doctor and i had to obtain it from a compounding pharmacy…

      mine is called “testot prop” 2% testosterone… its a light yellow cream that is rubbed directly on the vulva–

      um, sorry gals, it did not help me– i assume because the nerves leading to that region were damaged. i am hoping that as i continue to improve with prednisone, this to shall improve, i hope…

      apparently it is designed for post menopausal women whose hormones have shifted–

      alice

      p.s. yeah, where are the guys?:rolleyes:

    • Anonymous
      August 4, 2008 at 5:53 pm

      They advertise a gel on the TV I think it is KY gel or something like that and it produces heat sensation and is just not for those that are having problems but want to experience something different. It is an over the counter item. OK, I will go to the pharmacy tonight and get the exact name!

      Also remember, that area is a very complicated area where lots of nerves from the legs and back or core join the spine…it is hard to sort out any damage quickly. When your hands are numb that effects many other stimulation or acts as a big distraction….same with the feet. So we have alot going on and just not one problem that has a black or white answer. This is where your partner might have to help you too! Some days might be better and the senativity might not be there after a long busy day or when you are tired. Time of the day might be the key! Experiment!

      Oprah had a talk show today about SEX and one woman got a new house and furniture. I only got a Corvette so I have some work to do in this area! LOL I think the key is to relax and experiment. One way of telling how sensitive you are is to use a shower adapted sprayer and run the pulse down your leg. It is strange there is places on my legs that don’t feel the water spraying there. Places on my back and arms and head….so think what is going on in our bodies!

    • August 4, 2008 at 6:07 pm

      the KY stuff is interesting. I had a hard time finding it around here…thought it must reallllllly work for it to be sold out everywhere I went! I finally got some. It was interesting. Kinda warm, kinda not. I like it and want to explore it a little more ๐Ÿ™‚

    • Anonymous
      August 4, 2008 at 7:08 pm

      I could be wrong Kit, but I think you got a better deal with the Corvette than a silly house and furniture-hot car, hot woman, maybe that is what your husband thinks of you. That’s pretty great after 35 years of wedded bliss.
      Emma

    • August 4, 2008 at 9:16 pm

      Kit is lucky…I had to giggle when I read about your car. Whenever I see a hot lady in a hot car, I think “dang she must be goooood!”. I realized that I bought my hubby his ‘dream car’ a year ago and my own dream car is in the garage covered in dust and a few boxes. hmmmmmm……

      I do know that our own sex life has been lacking because I am having a bad day or this hurts or that is bugging me. I guess I need to stop complaining so much unless it is really really bad.

    • Anonymous
      August 4, 2008 at 9:34 pm

      He will not ask a doc is so common. You feel rushed in the first place and are trying to remember every word they say! Plus ask yourself if you understand and try to remember questions. I write down the questions. I also will slip the girl a list of questions to make sure the Doctor covers them in his talk. If hubby says he did not talk about it then I ask for a written answer. They take my list of questions seriously the next time!

    • Anonymous
      August 4, 2008 at 9:56 pm

      I am hoping my father doesn’t end up reading this, but what ever! Anyway, I was diagnosed with a severe case of GBS in October ’07. I have read a bunch of the replies and am so happy that this has come up. I have found that my desire has decreased and it takes a while to get going, but when my husband and I enjoy an intimate moment (which is rare since we have a 1 year old and usually has to be quick) I find that my residuals become heightened, I become extremely tingly all over, my double vision increases tremendously and I become very weak as well.

    • August 5, 2008 at 12:40 am

      Brie….I went thru that when I was entering the recovery phase. I’d be tingly from my forehead to my toes and my legs were shaky and felt weak. Now most men would be taking all that as a compliment, but man it was uncomfortable and made it hard to enjoy things because I knew it would happen.

      But then again I would end up tingly and all wierd after a lively conversation. Good gravy this GBS is bizarre!

    • July 12, 2010 at 2:22 am

      So far, the discussion has centered around female sexual dysfunction, but what about the other side of the fence?

      Can CIDP either cause or aggravate sexual dysfunction in men? Not only E.D., but could CIDP potentially cause premature ejaculation as well?

      Thoughts/Insights?

      KHS730

    • July 12, 2010 at 8:28 am

      Sex has been an odd one for me. My lower body was hit far less than my upper and I had no paralysis you know where. Normally, I am a pretty frisky guy, a bit much for my wife at times (which I have through discussions with friends come to accept as normal).
      For the first time in my life I am wishing away my sexuality. Pass the salt-peter please.

    • Anonymous
      July 12, 2010 at 11:06 am

      Yes everyone, GBS/CIDP & other autoimmune disorders do cause sexual dysfunction. As someone said GBS/CIDP affects the whole body, mind, & etc, including sexual. Women talk about it, men most likely don’t. I knew someone who had chrones disease, & know someone with MS with sexual dysfunctions. I thought there was a whole lot of write ups about it.

    • Anonymous
      August 14, 2010 at 12:25 pm

      Let’s just say that out loud, can’t we?? ๐Ÿ™‚

      I am so happy to see this thread. I thought I was alone with this, so am really glad to hear that I’m not. I am also afraid it’s age, and/or permanent.

      May I ask a question of those who ARE orgasmic? Was it always so, or did it
      ‘come back’, if you’ll excuse the pun?

      While I was heavily medicated, I had orgasmic hullicinations, but nothing since then. I’m single, and have not had a partner since shortly before onset (July 2009). But all the tools at my disposal, and nada…

      So… thanks.

      Barbara
      Diagnosed: July 2009

    • Anonymous
      August 14, 2010 at 3:43 pm

      Hello Alice, I am new in here so please bear w/ me/ I thougt i was the only one with the SAME problem. i am approaching my 4 yr anniv. i have gbs I asked my dr. she said try some type of lubrecant. did nothing. i agree that are special nerve ending are messed up big time. Margaret

    • Anonymous
      August 14, 2010 at 10:03 pm

      You can request a reply, but I don’t know how many would answer that question honestly.

    • Anonymous
      August 16, 2010 at 1:58 pm

      Hi all, yep me too – numb knob my hubby calls me. About six months ago “it”
      went dead. As long as we are discussing things, has anyone ever had their
      hands hurt like crazy when they pee? This has happened to me a few times
      recently. Everything is still good though, been married 44 years, my dream
      is to ask for a 1966 red corvette convertible on our 45!!

    • Anonymous
      August 16, 2010 at 5:19 pm

      I agree 100% and no I have not discussed this w/the neuro. My husband and I knew there were problems 3-4 years ago. I am so thankful I have an understanding husband.

    • Anonymous
      August 19, 2010 at 1:51 pm

      66 red convertible corvette, you go girl!!!!! Love, smitty

    • Anonymous
      August 19, 2010 at 2:11 pm

      Hello! Haven’t seen you posting for a while, welcome back. “Sexual dysfunction”, so glad Alice brought it up. It’s a tingly topic. I haven’t thought about sex for more than a decade.

      Love, smitty

    • Anonymous
      August 20, 2010 at 12:17 pm

      I was virtually paralyzed or totally dysfunctional from March 2002 until the summer of 2004, still left with a lot of residuals. Then hubbie had back sugeries in the summer of 2005 & the beginning of 2006 (very painful time & back still goes out a lot on him.) When we tried before his back sugeries, my legs would go numb & I would be sooo exhausted.

      We have been married 36 years now & find that a lot of kissing, hand holding, & cuddling in bed goes a long way. There are so many ways to express love & unite the bodies. But I guess I would feel differently if I were younger, just turned 57 & find marriage is about so much more than sex…

    • Anonymous
      August 24, 2010 at 4:10 pm

      I agree! Love, smitty

    • Anonymous
      August 25, 2010 at 11:41 pm

      Hubby is 60 and I am 58 and I guess one would think things would slow down as we age. 2 back surgeries then GBS all in less than a year really pullede the rug out from under me. Thank God for a VERY understanding husband. When we get frisky I pay for it the next day – exhaustion is the worst part. I get so tired so easily and am in bed often before 8. The other night it was 6:30 – school was very tiring that day. We have 4 day weeks and 3 day weekends which helps everything. But, I have to admit that increased numbness everywhere, especially anything below the waist (yup, feet, too) is an ongoing problem. Have to agree with the other ladies who say touch, holding hands, snuggling etc can be just as much an emotional tie – I gusee we all need to do what we can, wait for healing, and if it does not come completely then be grateful for what we have been given back. In my case, walking, feeding myselft, driving short distances, teaching – life. That is what I thank God for daily – and the rest is frosting on the cake. (althougth very sweet frosting ๐Ÿ™‚ )

      Thanks ladies for speaking out – I wish all neuros everywhere could read this one!

    • Anonymous
      August 30, 2010 at 9:31 pm

      When my CIDP was in full force I could not have an orgasm for 6 months. Slowly the feeling came back and things worked out fine. After 5 years with no treatments,because I could not afford them even with medicare. I am 90%
      better,but still unable to walk more than a few steps, I have to use a walker or wheelchair if shopping or needing to go any amount of long distance. But that is not the worst of it in 2009 I was diagnosed with vaginal cancer that invaded the rectal area. I had to have bottom half of vagina removed and reconstructed with muscle from my inner thigh. they removed the entire rectum and anus. Now I am living with a colostomy.It has been over a yr since surgery and still unable to have intercourse. I am having to start with very small dilator and eventually work my way up before I can allow hubby near me. Just when I thought things couldnt get worse they did.

    • August 31, 2010 at 1:47 am

      Oh Gloria I am so sorry to hear on top of everything else you had to go thru this as well! definite survivor!

      Is it normal for it to come and go?? I mean the urge or desire? doesnt help when meds to help with things make sexual desire non existent. The only thing in our favor is the amount of stress we have been under the past year. Most of the time neither of us thinks about reconnecting and staying close. does anyone else feel less sexy and desirable? In an argument hubby made a comment that with complaining about this or that or even talking about GBS related issues, he sees me as a sick person, not an “ooo baby” person. Ouch. It took me a while to get over that hurt. I can understand, but connecting somehow or someway sure would be nice and I think it would do wonders for both of us.

      With menopause on the way I feel as if I missed out on 4 years of intimacy dang it. This is one of the things I definitely want back. I keep my mouth shut about any issues unless they are really bad, make sure he knows I am interested, and even sharing a warm shower while holding each other close makes all the difference in the world. LOL and snuggling in the morning bad breath and messy hair and all…way not sexy, but I don’t care because love trumps sexy!

    • August 31, 2010 at 1:54 am

      [QUOTE=Brandt]Let’s just say that out loud, can’t we?? ๐Ÿ™‚

      I am so happy to see this thread. I thought I was alone with this, so am really glad to hear that I’m not. I am also afraid it’s age, and/or permanent.

      May I ask a question of those who ARE orgasmic? Was it always so, or did it
      ‘come back’, if you’ll excuse the pun?

      While I was heavily medicated, I had orgasmic hullicinations, but nothing since then. I’m single, and have not had a partner since shortly before onset (July 2009). But all the tools at my disposal, and nada…

      So… thanks.

      Barbara
      Diagnosed: July 2009[/QUOTE]

      Barbara, in my case, it did come back. Takes longer but if he is patient we are rewarded. I get so damn happy I sometimes cry. I think we look at our “tools” as we do other limitations this has left us with. So we can’t thoroughly enjoy them if that makes sense. Like we may hold a slight grudge or expect not to reach that moment. Light some candles, play some soft music, enjoy a bath, and try it again. I have found other places in that area that are sensitive and help get me where I want to go. You can try that, exploring and just giving into the moment. Forget all limitations and worries, just melt into the moment. I hope this helps. It took awhile for me and I am a bit past 4 years now.

    • August 31, 2010 at 9:14 am

      [QUOTE=fairly_odd_mother]In an argument hubby made a comment that with complaining about this or that or even talking about GBS related issues, he sees me as a sick person, not an “ooo baby” person. Ouch. It took me a while to get over that hurt. I can understand, but connecting somehow or someway sure would be nice and I think it would do wonders for both of us.

      With menopause on the way I feel as if I missed out on 4 years of intimacy dang it. This is one of the things I definitely want back. I keep my mouth shut about any issues unless they are really bad, make sure he knows I am interested, and even sharing a warm shower while holding each other close makes all the difference in the world. LOL and snuggling in the morning bad breath and messy hair and all…way not sexy, but I don’t care because love trumps sexy![/QUOTE]

      Hey Lori. I tried putting myself your hubby’s shoes regarding his comment. Perhaps its not that he doesn’t find you sexy, but he might be afraid he could hurt you. For most men, fear is not the path to a sturdy erection. Sounds like you two are however finding a way to connect.:)

    • Anonymous
      August 31, 2010 at 12:46 pm

      Not that I’m writing from a deep well of experience, but I’ll give this a try. I’ve noticed that several who have written earlier are in their mid sixties, so I am wondering whether in part problems with sexual dysfunction may be attributed to the effects of aging and the physical and psychological shocks of an illness that has very serously threatened one’s sense of competence as a human being.

      Let’s deal with aging first, and since I myself am in the later sixties, it’s easiet for me to talk about. You see, I’ve got this old Ford Taurus, and in cold, cold winter it doesn’t want to start very well. But then I throw in a can of STP, and whee! We go zipping down the road a good bit longer and faster. Naturally me and my old Taurus want to ask if any of you folks have tried Viagra, Cialus (sp?), or other medically brewed remedies I hear advertised on the telly for the old human engine.

      But let’s assume this is a real deep freeze, and even chemistry doesn’t get more than a deep groan out of old Bessie. “Yes, we got trouble, right here in River City.”

      It would be just fine if were all young bucks again, running through the forest of life and waving our stack of horns at every doe that came into view. But we’re not young bucks again, and let’s face it, that stack of horns is now often sagging. Still we’re supposted to take on not only the deep furrows and mud holes of our own life’s journey but also that journey across the Sianai (sp) that GBS recoverees often face.

      I don’t think that there is a drug out there to help this situation, oh, maybe some apenthe to cause a drozzy numbness, assuming loss of consciousness is preferable. And then rarely one finds an oasis and sustaining water. Otherwise, it’s just more sand and a parched throat. Still, long as there is life, there is hope. And I hope this message for you is only partially grim.

      Oh, yes, I am the husband and caregiver of a post-GBSer who returned to teaching about 1 1/2 years ago but still suffers sharp spasms of pain, particularly in her feet. That and other residuals that seem neverending.

      —Don Chalfant

    • August 31, 2010 at 5:51 pm

      Society makes it seem that as we age, we have to take more pills to keep performing at our peak. Now they are pushing Low T (which an acquaintance is taking and I have no idea how his family is living with him!) so men feel young and vigorous again. Between all the “keep it up” the “get up and go” and the “instant red cape” pills they are insisting our men need (this is after society tried feminizing them for so long), no wonder everyone feels so crappy. Our get up and go done got up and went. I think you have a point. We should also toss out all the “make dad look stupid” commercials and tv shows. They drive me nuts!! I may not understand everything about men…and vice versa….but I do know they deserve a heck of a lot more respect than they get in society and in the media (and sometimes even at home).

      As for me…GuitarGuy…there are lots of factors. But his comment just really stung because it was so out of the blue and in the middle of a stress induced argument. He isn’t exactly my caretaker, I do as much as I possibly can for myself. And if I don’t say anything to him, he doesn’t have a clue how I am today. You’d think the chance of getting some action would be a big clue as to how things are LOL! I know he loves me, I guess that should be all that matters. But those small intimate moments are so far between that it is hard not to take it to heart, esp when I am fairly blunt about what I want and need. Anyhow, lots of things have led to our situation, GBS was just the start.

    • Anonymous
      September 6, 2010 at 1:44 pm

      Oh, how I have appreciated this thread! The honesty, the thoughtful comments, the way folks have opened up – wow! My hubby has been so supportive – two back to back spianl fusions (last May and Aug, 8 hours each) took me out of commission real fast and for 6 months. Then GBS attacked just as I started to feel like a person again. 9 months into recovery I am starting to feel like my buttons are responding when pushed. My brain has been willing, my body not so much. So, now that I am well enough to feel “frisky” again we discover hubby is showing symptoms of being 60. When he sneaks up behind me in the laundry all that happens is a warm kiss – no walls melting away into a deep forest, or a tropical beach, or an intimate dinner – and for sure, no claw footed bath tubs! A visit to the urologist, some open, honest conversation with him, lab tests – all reveal significantly low testrone levels. I am now giving him testrone injections 2X a month in the rear, and we are begining to see results.

      The best part of all this is we have maintained an ongoing open dialogue about our feelings, our limitations, our successes and our failures. No “I’m sorrys” when performance is not up to our 20’s levels. Just lots and lots of hugs and I love yous – and celebrations those times when buttons get pushed and the electricity flows! At late 50’s and early 60’s we need to maintain our sense of humor, complete honesty, the acceptance that our bodies don’t – and can’t – respond the way they did 30 years ago. But, I look at my children in their mid 20’s to early 30’s and know I would not want to be there again! I am happy with my maturity, with my outlook on life and with the deep relationship I have with hubby.

      As with everything else, we need to understand we are recovering and be grateful each time another nerve reconnects. And when those nerves are attached to our very special “love buttons” it becomes a cause for celebration! Just don’t panic when the connection dosen’t always connect – because on those special occasions when the electricity does flow – – – well, break out those bath tubs!

    • Anonymous
      September 7, 2010 at 5:11 am

      Excellent thread and even more (to me) excellent post, Cathie!@!!!!!
      My wife and I are in that age category you describe, and all the feelings you describe, (especially me….:)). You are soooo right………..”No “I’m sorrys” when performance is not up to our 20’s levels. Just lots and lots of hugs and I love yous – and celebrations those times when buttons get pushed and the electricity flows! At late 50’s and early 60’s we need to maintain our sense of humor, complete honesty, the acceptance that our bodies don’t – and can’t – respond the way they did 30 years ago”……………………
      ………..this is so on target. And a really nice advice. Thank you.
      I will post more later. Please keep this thread going!!

      Perry

    • September 7, 2010 at 11:10 pm

      [QUOTE]Society makes it seem that as we age, we have to take more pills to keep performing at our peak. Now they are pushing Low T (which an acquaintance is taking and I have no idea how his family is living with him!) so men feel young and vigorous again. Between all the “keep it up” the “get up and go” and the “instant red cape” pills they are insisting our men need (this is after society tried feminizing them for so long), no wonder everyone feels so crappy. Our get up and go done got up and went. I think you have a point. We should also toss out all the “make dad look stupid” commercials and tv shows. They drive me nuts!! I may not understand everything about men…and vice versa….but I do know they deserve a heck of a lot more respect than they get in society and in the media (and sometimes even at home).[/QUOTE]

      [COLOR=”Navy”]I don’t think that I could p*** Lisa off more than by surprising her with a viagra pill. After a while we would both want the thing away from us. :p

      Thanks as well for the kudos towards the good men out there. Perhaps we will fully earn that compliment when we fully stop acting like boneheads.[/COLOR]

      [QUOTE]As for me…GuitarGuy…there are lots of factors. But his comment just really stung because it was so out of the blue and in the middle of a stress induced argument. He isn’t exactly my caretaker, I do as much as I possibly can for myself. And if I don’t say anything to him, he doesn’t have a clue how I am today. You’d think the chance of getting some action would be a big clue as to how things are LOL! I know he loves me, I guess that should be all that matters. But those small intimate moments are so far between that it is hard not to take it to heart, esp when I am fairly blunt about what I want and need. Anyhow, lots of things have led to our situation, GBS was just the start.[/QUOTE]
      [COLOR=”Navy”]So hard to get to romance during squabbles, hopefully some sugar can sweeten the deal. ๐Ÿ˜€ [/COLOR]

    • September 8, 2010 at 4:05 am

      Not all guys are boneheads, in fact the majority are not. Women can be just as bad if not worse! But again, the majority are not. It’s all in the communication and remembering that a relationship is about work and effort. It isn’t a honeymoon forever and life steps in and takes over. Steal those special moments, whatever they may be, and enjoy them immensely.

    • Anonymous
      September 13, 2010 at 6:26 pm

      Looks like not too many dudes want to talk about this issue.

      But it happened to me as well, although it was only temporary.

      When my CIDP was in full force (I had just turned 36), I had ED for roughly two months and had extreme numbness from the waist down. Tried to get things going on my own many times but it just wasn’t gonna work.

      Once I began to get better and the numbness dissipated, everything came back.

      Now it is not an issue at all.

    • Anonymous
      September 13, 2010 at 7:06 pm

      One of the ‘things’ that I’d liked from my own DH, was I liked this special person as a friend as well as more!
      As we get older, our friendship grows while other aspects diminish. Doesn’t mean we don’t have urges? But, given the CIDP and a slew of other problems, we deal with it all as super good friends, spouses and get on with life. Albeit amended from what we’d expected. We’ve both been thru good and bad situations, but we’ve been thru them TOGETHER. Similar of mind and spirit.
      I guess, given the ‘numbness’ that CIDP can cause, being TOGETHER and supportive of each other is far more than many get. Special hugs and kisses etc are even more special now.
      Given your age? [I’m much older] I could only suggest that you discuss this frankly with your neuro? He mite suggest a second office visit W/ your husband? Maybe your DH is feeling ‘failure’ somehow…to boot? And likely it is NOT! Have him talk candidly with the neuro…then with you both. Then? See what can happen! There are always ways around this all! It’s just finding the safest or best ways!
      I wouldn’t be at all surprised if there were medical articles about ‘neuropathy and ***** relationships or functions’… worth a look up and see?
      My heart is with you on this one. It’s frustrating and other things all at once! Keep faith in yourself and your spouse and keep on going! Just just don’t throw some aspects out the window? Ask the docs, Likely it’s one they will feel useful doing something for you both! Hugs and more!

    • Anonymous
      September 15, 2010 at 11:35 pm

      [QUOTE=fairly_odd_mother]Oh Gloria I am so sorry to hear on top of everything else you had to go thru this as well! definite survivor!

      Is it normal for it to come and go?? I mean the urge or desire? doesnt help when meds to help with things make sexual desire non existent. The only thing in our favor is the amount of stress we have been under the past year. Most of the time neither of us thinks about reconnecting and staying close. does anyone else feel less sexy and desirable? In an argument hubby made a comment that with complaining about this or that or even talking about GBS related issues, he sees me as a sick person, not an “ooo baby” person. Ouch. It took me a while to get over that hurt. I can understand, but connecting somehow or someway sure would be nice and I think it would do wonders for both of us.

      With menopause on the way I feel as if I missed out on 4 years of intimacy dang it. This is one of the things I definitely want back. I keep my mouth shut about any issues unless they are really bad, make sure he knows I am interested, and even sharing a warm shower while holding each other close makes all the difference in the world. LOL and snuggling in the morning bad breath and messy hair and all…way not sexy, but I don’t care because love trumps sexy![/QUOTE]

      I am sorry it took me so long to get back here but had alot goin on.
      I dont know if it comes and goes,once my orgasms came back they stayed until my cancer surgery . I didnt lose feeling again just desire. My problem now is more mental than physical.It is hard to feel sexy with a colostomy bag hanging on the front of your stomach. It doesnt seem to bother hubby but it bothers me.Also from the time I came down with CIDP hubby has had the worst attitude about the whole thing, he resented everytime he had to do anything to help me. He would get made if I asked him to get something down that I couldnt reach,brother in law bought me a grabber but cant use it on heavy or breakable items. When company was around or we were out in public he couldnt do enough for me.Everyone thinks he is a saint for “taking care” of me. We have had so many arguements and I have cried so many tears because he acts like its my fault or something and he doesnt want to be asked to move. So I do as much as I can and I have been known to wait til one of the kids came to visit to ask for help. Even during all the cancer stuff it is the same way he didnt want to help with anything. Now that I am healing he is all ready for us to attempt to have sex again.It has been a year since surgery but they removed the bottom half of my vagina and had to reconstruct it along with removing the rectum and anus.It is still very sore down there and I am having to use a small dilator and work my way up to bigger ones until I am able to attempt intercourse. I know there are other methods we can attempt to do but I have so much resentment towards him and after we have argued or he has pouted all day I am in no mood to get intimate.
      These days I am more interested in wanting to get my balance back so that I can attempt to walk or even stand up long enough to brush my teeth without losing my balance and falling. I cant bend over either without almost falling it is still so frustrating even after all this time.

    • September 16, 2010 at 7:45 am

      [QUOTE=gloria1960]Also from the time I came down with CIDP hubby has had the worst attitude about the whole thing, he resented everytime he had to do anything to help me. He would get made if I asked him to get something down that I couldnt reach,brother in law bought me a grabber but cant use it on heavy or breakable items. When company was around or we were out in public he couldnt do enough for me.Everyone thinks he is a saint for “taking care” of me. We have had so many arguements and I have cried so many tears because he acts like its my fault or something and he doesnt want to be asked to move. So I do as much as I can and I have been known to wait til one of the kids came to visit to ask for help. Even during all the cancer stuff it is the same way he didnt want to help with anything. Now that I am healing he is all ready for us to attempt to have sex again.It has been a year since surgery but they removed the bottom half of my vagina and had to reconstruct it along with removing the rectum and anus.It is still very sore down there and I am having to use a small dilator and work my way up to bigger ones until I am able to attempt intercourse. I know there are other methods we can attempt to do but I have so much resentment towards him and after we have argued or he has pouted all day I am in no mood to get intimate.[/QUOTE]

      Hi Gloria
      I feel ashamed to be a man after reading your post. How can he think that anything could happen given your condition and his attitude? That you continue to show the slightest concern for his ‘needs’ is heartbreaking. Time for hubby to stop off for roses, chocolate, your favourite dvd for you and a bottle of lube for himself.

    • Anonymous
      September 16, 2010 at 10:24 pm

      hahahahahah!!!
      Damn, that was funny, Guitar guy. And the message was very well put and delivered. Please heed, Gloria. I agree totally with guitarguy. Good Grief !!
      I feel so bad for you. ๐Ÿ™

      Per

    • Anonymous
      December 8, 2010 at 10:11 am

      As for any problems, i’ll just say my wife and i had sex in the rehab hosp, oh i also had a catheter at the time! Just grabbed a glove, bend the cath over gently and there u go! HURT like hell! But would do again, so would she! My GBS has made us more intimate and passionate, closer than before GBS. And we welcomed a new daughter in May ’10! I’m 42 now so kinda gett’n old ๐Ÿ˜€

    • Anonymous
      January 4, 2011 at 11:13 am

      Since the topic has been opened for discussion has anyone lost their sex drive/desire since GBS? I feel like I have lost interest in sex.

    • Anonymous
      January 24, 2011 at 1:33 pm

      Hi All,

      I believe that everyone’s difference and recovery is not always complete. For me, the feeling didn’t start to come back for 1 year and at 9 years post, It’s still hit and miss for me. I started with Viagra right away and with it was able to have intercourse with my wife. No orgasms for a couple of years and then only once in a while when my wife works really hard and for a long time.

      I believe that our meds that we all take make things much worse. With my doc’s blessings, I stop taking meds 8 hours before we have sex which makes a big difference for me. If I’m on meds it makes the big O impossible.

      I also believe that working the few muscles I have left down there has helped too. During orgasms the muscles contract involuntarily and it’s those muscle that I try to exercise. At least once a day I work the muscles that stop pee.

      Just thought I would add my 2 cents,

      Rob

    • Anonymous
      January 30, 2011 at 12:16 pm

      Since we’re all being open about this subject…

      When I first came home, it wasn’t very good. The feeling was lessened.

      But now I am MORE sensitive! Orgasm now comes much faster, is more intense, and I am experiencing multiple orgasms. I don’t know if it’s the meds, or being less inhibited and feeling closer to my husband since GBS.

      Prayers for all of you with the opposite issues. Sex is often an important part of your relationship.

    • February 1, 2011 at 7:47 am

      [QUOTE=Allsmiles]Since we’re all being open about this subject…

      When I first came home, it wasn’t very good. The feeling was lessened.

      But now I am MORE sensitive! Orgasm now comes much faster, is more intense, and I am experiencing multiple orgasms. I don’t know if it’s the meds, or being less inhibited and feeling closer to my husband since GBS.

      Prayers for all of you with the opposite issues. Sex is often an important part of your relationship.[/QUOTE]
      no wonder you call yourself allsmiles!:D

    • Anonymous
      February 14, 2011 at 11:07 am

      Just a quick note – some of the medication that I was on made it difficult or impossible for things to occur.

      I spoke with my phsiatrist about this, and we worked toward the common goal. A couple of months later things were working much better.

      Weaning off of some medication and slowly ramping up on different replacements, under the Dr.’s care and advice, I was able to function in that area.

      Brett