A sensitive subject

[navydad]

Well here it is from a mans point of view, right before I got DX;ed with SS,, I had the misfortune of getting peyronies disease,, I wont explain what it is, you can look it up, it made sex just  unbearable and still dos to this day,, but we try as much as we can to retain that part of our marriage,, my wife has dryness issues,, prob fro middle age related things,, so were both caught up in a bind of sorts,, but we try to make do as best we can,, this evening i noticd the neuropathy getting worse in the legs,, cant feel cold or warmth,, and its making me crazy,, shaking my leg like theres something on it,, my wife saw me and came over and started to rub my legs,, it doesnt help,, but she trys,, she sees me hobbling around like a cripple,, and gives me hugs,, this darn disease has made me feel less of a man,, the things i use to do without even thinking about need to be thought out,, planned,, thought about again,, then try to do it,, I have come to rely on her for so much and it saddens me,, she works hard and has to come home to se me trying to live life like a animal at time,, trapped in a body that cant function like it did,, its made me bitter,, but sh sees it and jst says I still love you no matter what,, she really doesnt undrstand te full implicatations of tis disease,, and neither do I,, but together were both learning and hoping that it gets under control,, but through it all,, we love each other dearly,, shes MY LADY, has been for 36 years,, my High School sweetheart

[ohiolady]

Navydad,

I read a lot of your posts and my heart is just filled with compassion for you.  Don't give up hope that things will get better.  I am hoping and praying they do.

Anna

[Epson]

I can sympathize with all of you, having a cystoscope and a wire jammed down your penis every week, not to mention the chemo, certainly keeps intimacy out of your life, intimacy, what am I talking about, I would just look to pee without pain

[sassytoo]

Vicki- I can't thank you enough for bringing up this subject. I was thinkning I was the only one. My hubby and I haven't had sex in over a year and it does hurt and I wish that we could. But it is so painful and I have tried everything. Not only is it the sjogrens , I had a hysterectomy so I am double dry.
My husband never talks about it, but I know he must want it bad. I just go to bed earlier then him and I am asleep when he comes to bed.

I know this isn't the answer, but.....

[harrigan]

Cheryl - not sure the Numzit would be a good idea, bearing in mind what else it might work on!!

[wednesday mc haggis]

Its a subject that afects us all i think.

6 months ago when they said endometriosis , was baecause i was suddenly floored by fatigue and pain during sex was terrible, also pain in my pelvis.They did swabs and ruled out infection, when i seen the gynaecologist , she said well this isnt endometriosis, i discussed symptoms, we realised it was dryness, and sjogrens was mentioned.Once i started using lubricant, i still had some pain, but pain in my pelvis settled down alot.
 
Myself and my fiance only moved in 8 months ago together, so its had its impact in the sex life, as it were. At 37 it gets me down. he is 34.

i cant say what affects me the most, the fatigue and by time kids to go bed i just want to lie on sofa like a dead duck, or pain in joints, or low mood, or lack of drive, or fear of pain puts me off, i cant say .Im trying to work that out.

T x

 

   
   

[Tinker]

Did you all read my mind?  I have struggled with this issue for so long.  I'm always thinking of how to avoid "it."  I'm Afraid.....the pain is too great.  But I love DH and know he has needs.  He's very understanding and great, but it's a shame to limit this wonderful part of marriage.  Yes, we hug and kiss everyday, but it's not the same. 

This thread has some heartfelt feelings spilling over in many of our lives.  There are many who did not post because of the intimacy of the topic, but they are reading.

YOU ARE NOT ALONE!  So many are struggling with this problem.  My GYN said to buy a product named Pink.  But that doesn't solve the desire issue.

Sometimes I feel soooooo cheated....why do we have to lose this too, on top of all the other sacrifices?  And then another day passes, and another.  It's not getting better.  I'm hoping all will be ok.  But I feel his disappointment and sadness.  It's something we cannot help, but we can make sure that our DH;s know we love them and we can show them in other ways.  On his hard days at work, I've tried to cook dinner for him, do his laundry, or clean his closet as best I could.  It's brought us closer together....that he knows I care and I'm trying to help him with what little energy I have.

Why don't the dr's listen to us?  They can offer me nothing except an estring which helps a little.  But those wonderful "needs" simply don't exist for many of us women.  I know menopause, chemo, FM, SS, pain, meds.....all take their toll. 

But when will the medical community help us?

[Maria3667]

Maybe I'm a bit late replying to this, but my libido went AWOL just before Sjogren's manifested itself.

For me it's not so much a matter of lubrication or pain, rather than having lost desire & ability.

My gyneacologist prescribes me low dose testosterone for this purpose. With marked improvement  !

[wednesday mc haggis]

mria  glad to know somethings worked for you, libido is such a fickle thing, good to know youve got some help from the testosterone !

T x

[lcm]

Seems we can all relate to this. I am newly diagnosed with SS but when I think back, wonder if I haven't been dealing with it for years. I have the same issues of lack of desire, energy, etc. My husband is not supportive or helpful, or tolerant of the change in our sex life. Of course the more he growls at me and tells me I'm having a pity party when I am so tired I fall apart, the less I feel like even trying. I'm glad to have the diagnosis and to know why I feel this way, but it's also life altering to know that this is lifelong and not likely to get really much better, just be controlled. I really need the spouse that would take me in his arms and help me through these fears and to tell me it will be ok. But I don't have that so I am thankful that I can talk to all of you and know that you know all about what I'm feeling. thanks.

[lurkernomore]

Sal, your post was truly beautiful. It made me stop and think of all the tiny little things that my husband does for me on a daily basis. Thank you for that post. I think I'll go sneak a tiny kiss on my sleeping hubby's forehead.

[Katybarstool]

We have had issues of a sensitive nature. Mine are solved to some extent with topical oestrogen, Replens and E45 cream as a wash. Hubby has had problems too, as he has prostrate troubles. I think the way we cope when intimacy is not possible, is by being just being good friends and always ready for a cuddle - much to our kids disgust 

Kathy

[wednesday mc haggis]

kathy   sound slike you and hubby have a great relationship there, i know my dad since diabetes struck has had problems, we can talk to each other about thse things( he is my step dad, but we dont treat each other that way)  strangely id say him and mum were closer since, as you say more tactile in other ways, but not to my disgust lol

T x

[Tinker]

We have had issues of a sensitive nature. Mine are solved to some extent with topical oestrogen, Replens and E45 cream as a wash. Hubby has had problems too, as he has prostrate troubles. I think the way we cope when intimacy is not possible, is by being just being good friends and always ready for a cuddle - much to our kids disgust 

Kathy

Kathy , tell me about E45.  How much?  Script?  Estrogen cream? 

[Nathan]

I sort of see this issue from the other side, being a guy with Sjogren's. I haven't had trouble in the past with functioning, but my wife has dryness issues due to a hysterectomy and a number of surgeries a few years back. I realize that there is pain and difficulty with intimacy, and I definitely try to be patient. I am understanding. I can relate to the desert analogy. I don't have any expectations, but when I get to eat a big slice of cake, I enjoy it as much as possible.
I don't know if I should even say this, but try to not feel guilty. Understanding husbands will accept you as you are, and still love you regardless of your health issues. "In sickness and in health" is a promise.