I hope it's ok to talk about this here?

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colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 9/1/2008 7:11 AM (GMT -6)   
How do you all handle intimacy since ms starts to progress? My husband and I have been married 8 yrs,we are both "young" at 29. Of course we have normal difficulties because of him working alot and having young children. But with me,there is always something going on. I had a major flare this past spring,which kept me down for nearly 3 monthes. I turned right around and had double surgery in June(gall bladder removal and edometrial ablation). Now I am still feeling exhausted from this last flare,even though it was just a few weeks. My husband is getting annoyed with me. He doesnt say anything because he knows I havent been feeling well,but I can see it on his face when I say 'not tonight,I dont feel good',etc.. We have a good marriage,but I am afraid I am ruining that. I have a hard time even getting close,even to snuggle because I know it will lead to sex...and I simply dont have the energy. I hate even admitting that. I dont know how to talk to him about this,I have tried...but I can tell he doesnt understand even though he claims he does. I have read so much about men with MS having more difficulties,but I cant say I have ever read anything about women having this problem. Am I alone? Is it me? Is this something I should try to talk to my dr about? I want so badly to keep my marriage going strong
 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 9/1/2008 8:40 AM (GMT -6)   
Hey Nichole,
 
Of course it is ok to talk about intimacy problems.  It can be a problem with people with MS.  I would certainly mention it to your doctor.  Women with autoimmune can also have early menopause.  If you have had even a slight drop in your estrogen levels you could experience a loss of desire.  A simple blood test can determine that.  I would totally discuss this with your husband.  Men can take this as "I don't love you like I used to".  Make sure you explain to him that you still love him and you miss him intimately but that you are just not up to it because of your health.  Reassure him that you are frustrated too and that you want to find a way to remedy this and that you are going to talk to the doctor about this.  I think men worry that this is how it is going to be forever.  Good luck with this.  It is amazing how much MS can affect us.
Gretchen       co-moderator MS board       diagnosed with MS July 2006


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 9/2/2008 9:24 AM (GMT -6)   
Thank you Gretchen. I didnt realize it could be that simple to check,a blood test. I have an appt on Sept 8th for my eeg and ct results so I will definetly talk to him about this then. Maybe it would help if I brought my husband with me? Poor guy,he constanly asks me if I still love him,and if I am still attracted to him...of course I am!! It's such a private thing,it's hard to discuss...but in order to save my marriage,I need to find out.
 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/2/2008 5:28 PM (GMT -6)   
Hey Nichole

I agree with Gretchen....u CAN discuss anything u need to here and i would discuss this with u'r doc and husband. I would add that u SHOULD bring u'r husband along on that visit to u'r doc's for that discussion. He may need to see that u'r not the only woman dealing with this problem and ms and that alone may give him new energy in dealing with this. I know it sounds weird, but somehow our spouses get to thinking we are just feeding them a line...'i don't want to because (fill in the blank)' and that we may be using that to keep the schedule to our liking. My own husband couldn't believe that a migraine could cause the kind of pain i claimed i was having. I'd lay in bed for a whole day in pain while he kept the girls. It took his hearing it from another lady in our community...describing hours of pain at a time...for him to realize that this is real. I went thru this very thing not so long ago and in some ways am still dealing with it. It's NOT that u don't love him...it's just so hard for u to get u'r head around it u'rself...that makes it so much harder to explain it to him. Trust that he will understand and get him in the loop with u and ur' doc. G is right...get that test for hormone levels. I had it and found that mine were ok...but i wanted to see if even a little boost could help. So, i tried that over the counter product called Estroven. It works!! I used it for awhile just as a test and it did make a diff in desire and drive. U may need something for energy too tho...have u tried provigil?? I'm sorry, i can't remember what meds u'r using. I hope the doc appt is productive and u get the support u deserve friend. Hang on and know this will get better.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 9/2/2008 6:10 PM (GMT -6)   
Hey Nicole,
I totally agree with Gretchen and Rhonda. I was having the same issues that u are having, Nicole, I think that, number one, being a mom in itself is tiring and alot of women tend to loose their desire after having children (i experience this after my daughter was born and thought it was just me until i saw women on oprah discussing the same thing). Number two, throw in a chronic illness and yikes. I went thru the same thing. I think that b/c this ugly disease is constantly on our minds, its hard to focus on anything else. Greg and I, taking advice from his mom, always try to pick a night where its just the 2 of us. Wether you go for dinner or to a movie, or even just for a walk, it makes a big difference, just being with each other. It helps to really just see each other and appreciate why you are together. It does help. This is just a little tip that i thought i would share that works for us. Definately discuss with your doctor, and taking him with u sounds like a good idea also. Its so hard, i know. Good Luck with everything.
Love
Lynn


Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil

Post Edited (Sweetlydia66) : 9/2/2008 7:15:04 PM (GMT-6)


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 9/3/2008 5:57 AM (GMT -6)   
Thank you so much Ladies,it really helps knowing that I am not alone! I talked with Joe about this a little bit last night,while we were watching a movie...I guess I didnt want the focus to be right on me. He was surprised a little that I am willing to talk to my dr but is 100% willing to come with me and I think it was a breath of fresh air for him.
 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 9/3/2008 7:08 AM (GMT -6)   
Yay Nichole!!!!!  Good for you for facing this disease head on and all aspects that it may be affecting.  That is the way to make sure your life stays sweet and full of joy.  I am proud of you!!!!

Gretchen       co-moderator MS board       diagnosed with MS July 2006


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 9/4/2008 7:33 PM (GMT -6)   
I just want to chime in because I think it was brave to bring the subject up and there are some great responses here. For me fatigue is the issue. And so like you, I would avoid even snuggling in the evening, because I was afraid of any expectations. Once we talked about that at least we can have some intimacy and I am just clear where I'm at. A key discovery for me was that mornings are much better! Intimacy has never before been something I had an interest in in the mornings- messed up hair, morning breath and well, a lot more natural lighting...but my energy is much better then. Just weekend mornings though, because no time before work ;) Also- getting an okay that sprints are just as good as a marathon and always talking about where I have pain or numbness etc. Because what feels good this week may be numb next week. There is so much involved with MS! And the date nights or time without kids is critical. And for me, I have to leave the house or I can't relax about housework etc. We look for free opportunities- MS seminars by pharmaceuticals are free and they feed you! We might by a coffee and just spend two hours browsing Borders together and they have comfy chairs to sit in if you're tired. Get creative and keep changing and trying new things til you find what works for you. And keep talking talking talking to your husband about everything. I am going to ask to get my hormones checked though, haven't done that. Thanks ladies- Willow

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 9/5/2008 9:16 PM (GMT -6)   
dear Colee, you ARE a brave lady and one I am grateful for bringing this up! I have wondered for a while how to broach this subject as I have been dysfunctional for several years now due to the MS. It's one of the most subtle but devastating symptoms that snuck up on me without any warning but since happening, has been a wall of issues between me and hubby. He simply doesn't believe it's related. No matter how I tell him.
 
And all the fears you expressed have been mine too...because that is his pattern. No amount of talking has solved anything. Mind you he isn't neglected by any means... but for me my sensations are nil. I've explained to my neuro it's like everything else below my waist, not much works right...
 
I don't have hormone issues either as I lost ALL of them at age 34 due to precancerous situation so that both ovaries and the uterus had to go at once. But from then til age 50 I was a healthy happy woman... then poof! The switch turned off... and man, I hate it for hubby and me!
 
I've even tried Viagra and yeah, it works the but the aftereffect is horrendous for me, it wastes me with vertigo and nausea that makes it worthless to have to endure just for a few minutes of maybe? Sorry, not to minimize it but with everything else in my body... it's a back seat issue anymore... so Colee, thanks for broaching the subject. Your bravery was much appreciated!
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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