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Patients Multiple sclerosis

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Posted on

Hi, I hope it's alright to talk about this on here, but I'm really looking for others' advice or thoughts. 

Since my diagnosis years ago I've really struggled with being intimate with my husband. I just don't have the desire, and I don't know if it's from my MS or a side effect of my medications, or both. I'm a bit embarrassed about it and haven't been able to bring it up with my neurologist, it's hard enough bringing it up with my husband.

Again I hope it's alright to post this here. I guess I'd like to know if anyone else is going through this, or if it's just me? Is there anything we can do about it? How do we cope?

Thanks in advance.

Beginning of the discussion - 6/3/20

Being intimate with MS

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@looking4 Hello, looking4, thank you for opening this discussion, of course we can talk about that here! This is an important topic, as chronic illnesses like MS can take a significant toll on not only our physical health, but on our mental health and intimate relationships.

We recently published an article on sexuality and chronic illness that may be helpful to you, let me link it here: Intimacy with a Chronic Illness

Now let me tag some members who can maybe weigh in!

Hello everyone, I hope you're well! Has your MS or your treatment affected your emotional and sexual life? Do you talk about it with your partner or significant other? What to you do to cope or to make things better?

@WVBFawn@Natalie55@Darthvader@Mamahawk@Me122778@DeeDeeHardy@RobinRay@Cheermom70@DHAWK60@BobbiSchaef@Aeason1027@MJSPANJER@kcmarz218@msmarian12@Lylajane@Brontosaurus‍ 

Feel free to share your thoughts, doubts, fears and feelings here! We're all here to help each other!

Take care,
Courtney

Being intimate with MS
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I admit to having low libido. I have several issues going on at once, so I too am powerless to know. I have cervical problems, urinary issues, MS and weight gain. I have gently talked to my husband about it and says he understands, but I know he craves a sex life. We have only been married two years. I'm getting help from the neck and spine doctor, soon a urologist.  Two at a time seems to be enough at the moment!  All I can do is to assure my husband that I still love him, etc.  I already hit him with my MS diagnosis on February and neck surgery last year and another pending surgery for the neck and cataract surgery in August.  Sheesh! The poor guy had had quite a few things happen at once.......so I cuddle and kiss him and try to show him I love him in little ways. At the moment it's all I can do!

Being intimate with MS
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I wish I were one that was brave enough to share this with my husband, but I think deep down I’m afraid of his reaction. 🙁. He’s been helpful and supportive, but I have overheard him refer to me as an extra child, and that cuts to the core.  I mean, I know I’m a burden, but hearing it from the one person you thought was your #1 at everything...  is so disheartening and it has left a scar.  It’s always in the back of my mind.  I feel so worthless and even guilty for being here.  I’ve had a MS dx since 1999.  We met in 2001 & were married in 2003.  We have two beautiful sons, 14 & 9.  They are my strength and smile each day.   Ok, now with the issues that I am dealing with intimacy-wise.  I have dryness and pain during sex.  My energy is nonexistent. I’m on so many different medications that destroy my libido.  I’m post menopausal.  I’m only 45.  I hate it!!!!  I love my husband but I fail at giving him a great sex life.  I’m going to leave it here... it’s too sad writing all of this.  
Best wishes to you all.

Being intimate with MS
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i dont have those problems. I want it all the time. Im just dry. I have this need to feel needed wanting to be held and needing attention. Afraid of being alone. And im single so that isnt good.

Being intimate with MS
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@WVBFawn It broke my heart reading your message. That's very insensitive of him to refer to you that way. You are not a burden, you're his wife and the mother of his children! 

I have dryness too. Water-based lubricant helps, but it can still be painful. @Brontosaurus I can definitely relate to that feeling of needing to be needed. Keep your chin up, you'll find someone!

Being intimate with MS
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@WVBFawn That's how i feel like a extra kid.. My husband has kids but i dont.. I want kids so bad but he really dont care to have more.. I just want to feel that unconditional love.. At least before i leave this earth. With me being 33, with MS and RA .. It's so stressful.. 

Being intimate with MS
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I truly hear you @Juciee87‍.  I hope you’re able to have your own child one day.  
💜💜💜💜💜💜💜💜💜

Being intimate with MS
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@WVBFawn aweeee... Thank you so much

Being intimate with MS
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@looking4 You're not alone. To give a male perspective on it, it happens to us too. I've been having some ED issues, and then on top of that, sometimes I can't control my bladder, so that's another "sexy" detail to the disaster that is my bedroom life. I know it's hard to talk about because it's awkward and embarassing, but sexual life is an important part of the life of a couple and also human life in general. Don't be afraid to bring it up with your doctor, I recently started meds for my ED and we're going to see if it helps. And talking with your husband is important because he's half of the couple right? If you talk together about what's working and not, what's hurting and not, you should be able to figure out how to be close together.

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