I've wanted to post regarding a sensitive subject for awhile, but wasn't sure how to approach it. Rach mentioned it briefly when responding to Pooh's topic "What is the worst thing about SS."
Although not sure how to verbalize my feelings, I'll just delve right in. The subject I'm referring to is my lack of a sexual relationship with my husband. Our sex life isn't totally gone, but almost.
We have a wonderful marriage and always have. He is my best friend, my comforter, my protector, and we've always done everything together. I couldn't ask for a better huband, father to our children, and grandpa to our grandchildren. Yes, sex was always an important part of our relationship. Since I've been sick, this part of our life together has become almost nonexistent. All of you know the difficulty trying to sleep with the wacko body temperature and the horrific pain, not to mention the continually dry eyes/mouth along with getting up several times to go to the bathroom. Many nights I don't even go to bed as my recliner or sofa becomes my bed for the night.
Before I got sick, the greatest comfort of the day was going to sleep in each other's arms. Now, majority of the time, it's hard for me to even cuddle as my body hurts too much. If I lay on my side, my elbows and knees are in tremendous pain. If he gets real close to me, my temperature goes crazy with me so cold I'm shivering one minute and sweating the next. I miss our cuddling so much and I know he does too.
He doesn't complain. He tells me everday he loves me and gives me loving hug. He tells me everday I'm his "pretty lady", a pet name he's called me for over 30 years. When I bring up this subject with him, he tells me it doesn't matter. He tells me what does matter is all our years together, our closeness, friendship, and love. He tells me we are growing old together and what makes our relationship special is lovingly accepting the good and the not so good. He tells me he will always be here for me and I know he will. He tells me I am the most important thing in his life and helping/taking care of me is a part of his showing his love for me. He also tells me he knows I will always be there for him and a favorite saying of his is "My time is coming....and you'll be here for me."
I feel guilty much of the time because I'm sick. The burden he carries is tremendous. He is working a part time job in addition to his regular one just to make ends meet. He finds the time to go with me to my doctor's appointments and helps with the heavy stuff around the house. He even does special things like getting out my decorations when I don't feel like it, building new bird feeders so I can watch the birds, and going shopping with me so he can help. I know he does all he does and puts up with all he does because he loves me. Yet...I feel guilty and yes, I feel sad. Yes, I miss that part of our relationship.
Do any of you have my problem? If so, how do you come to terms with the guilt? How do you deal with this sensitive subject?
Thanks for hearing me out and most of all, thanks for your support. Well, I guess I said what I wanted to say....hope it came out alright.
{{{{Hugs}}}}
Vicki
"Those who have suffered understand suffering and thereby extend their hand."
Vicki,
Yes..it came out alright. It's a subject close to my heart as I feel the same way and your story could have been written by me and probably lots of others. These men who love us and care for us are very special and we need to let them know how special they are in every way that we are able to. A loving touch as you pass him, a special dish cooked for him, actually taking time to really listen to him and making his life as easy as we possibly can. There are a lot of things we can't do any more but..there are a lot of things we can and we need to go out of our way and make some effort to do just that. I quietly go to the computer when there is a ballgame on that i know he wants to watch and I could care less about. I get up to let the dogs out so that he won't have to get up and stop what he's doing.
I really don't know any way to make the physical part any better. It is a part of our life that I miss so much too. But I do stop whenever he's standing in the kitchen or den and just put my arms around him. He needs touch as much as I do. There are a lot of men who take the vows of "in sickness and in health" seriously and it sounds as if your husband as well as mine really meant it. We are blessed.
Billye
Vicki,
I think all of us who suffer from Sjogrens have at least to some degree the same problem as you, whether it is from the aches and pains/fatigue or the terrible dryness causing pain during sex. Having a wonderful, understanding husband (like I do as well) is such a comfort, but I understand the guilt too.
I am never under pressure from my husband for this part of our marriage, although I am sure he would like it more. The one thing I do is make sure I take all my medicines regularly so that there are times that I do have some strength for it. My doctor has also given me Vagifem. It is a small dose estrogen that is inserted vaginally to give more lubrication. (It helps a little.)
But one thing that helped me was when an older married woman said to me that love and friendship is like the main meal of marriage and sex is the dessert. We all "love" dessert, but we can live without it. But we can not live without the main food or we would starve to death. So that love and friendship your wonderful husband shows to you and you for him is really the most important! And when you do get "dessert", what a treat it is!! (I am sure every man who happens to read this is thinking they could live on sweets :) )
I hope I phrased that alright and haven't offended anyone.
Liz D.
I feel guilt also and my husband is great about helping and understanding my limitations.I've been there for him as well over the yrs. and never did I resent him or think of not staying but when it's you being a burden it's always in your thoughts.I just try and be aware that if I'm having a good day,hour or even minute I spend it by giving him attention in some way.We've found our intimate time together requires us to sneak off to the bedroom whenever I feel up to it.We're like teenagers disappearing from son and elderly FIL in the house!I don't know your age but when we had three kids growing up alot of Christmas lists were being made behind closed doors.My grown kids still laugh about it now that they are old enough to know better.
Vicki,
You were brave to bring up a topic that I know many of us have wondered and worried about. I also have a very loving and caring husband. We have been married for almost 42yrs and he has always been there for me. I remember when I was younger thinking that when people have been married for a long time that sex would be a thing of the pass and never even thought about, how wrong I was. I know he misses it and so do I.
I think our fatigue has a lot to do with the inability to engage in sex. There are times I just plan can't even get my mind to want to think about it, let alone do it. Then of course there's the dryness and pain.
I am going to be frank here and hopefully not offend anyone. Intercourse is an act of love that can be so missed, but as we know it is not the only sexual act or way of showing love. I try to do everything I can for my husband to satisfy his needs, and he for me. We know that we love each other and if a touch is all that we can do, then that is all we may do. If I'm able to proceed further than we will. (not going into any more detail)
I love what Liz said about "the meal and dessert", that is so true. We are very fortunate to have husbands who truly believe in the vows that they took "to love in sickness and in health". My husband always tells me not to feel any guilt about anything, he says "we are in this together and that is all that matters"
I hope that my frankness has not offended anyone, but we are all adults and we need to be able to discuss all aspects of this disease.
Sue
Dear, dear Ladies,
I have read each of your postings, and each time I checked to see if maybe I had written it in my sleep. We are all truly blessed that our husbands were raised by parents that instilled the love for another in them.
I have been ill with this disease and all it's "gifts" for more years than I can remember. The intimate moments between my hubby and I have been sexless since an extremely painful night in 1987. Never in all the years that have gone by has my husband once complained. We have been married as many of you know, 51 yrs. almost 52.
With my ongoing disability becoming worse he has taken over the running up and down stairs, doing the laundry, bringing it up for me to fold and put away. Putting the dogs out and bringing the dogs in. Helping with the cleaning of things I can no longer reach. Transporting me to my ever endless doctor and lab appointments. Going to family functions alone because I am to ill to go along. Helping out our neighbor lady whose husband just passed away in the fall. All of the things that I once did alone.
Yes, I too carry the guilt you all feel, but I try to remember, that I feel this way because I love him so. When I'm down and crying about the guilt I feel at him having to do most of these things, he holds me in his arms and tells me how much I mean to him and how he couldn't go on without me. Yes, we are all truly blessed with the men in our lives, and I thank God every day for mine.
This is truly a subject we all have been dealing with, and it needs to be shared with those who are feeling the way we do. It will lighten their guilt a little, as it has ours.
Hugs and God Bless,
Pooh
All I can say is that you are all so very lucky to have someone in your life that is there for you through it all. Hold on to them and dont let go :) ! I completely understand your concerns Vicki about intimacy as it has been something I have struggled with as well. I have lost my desire for the most part due to pain and fatigue. I did and still do feel very guilty and very odd about this , but thats the way it is for me at this time. That doesn't mean that I still don't crave a gentle touch or hug, but many times it hurts too much and takes everything out of me to go much further than that. And yes...I do miss that part of my life! Unfortunately, I do not have the same support system as you all have mentioned. It sounds absolutely wonderful, and I hope that most of us here are able to find that in our loved ones, spouses, family, and friends...but if not...we always have this wonderful board to come to and find strength, hope and love from all of you that participate here. Hugs to you all!
Im crying as I type this....hardly any tears though as I don't have them anymore. My heart is full of emotion because you ladies took the time to open your hearts with your honesty. Reading your posts touched me so very deeply.
You're right Billye, the simple things we do CAN and DO make a difference and we need to make our husbands feel loved and appreciated. Liz, I'm sure you haven't offended anyone as I know they appreciate your words just as much as I do. Thanks for the tip about the Vagifem....am going to mention this to my GP when I see her next week. I took your advice Pooh and am seeing a new one.
Ruby, our grown children tease us as well about all the nights when they were in jr. and sr. high school and we used to go to bed early because Daddy was so tired. ;D
Sue, your words about intimacy are so very true. There IS more to sex than intercourse alone and I thank you for being courageous enough to mention this. You've given me something to think about. ;) I too like Liz's words regarding dessert because yes it is quite special when we can have it.
Pooh, we ARE blessed to have these men in our lives. Yours said he couldn't live without you and it makes me think how I couldn't go on without mine. What you said about our guilt is something I'll take pains to remember when I am feeling sad. I feel this way because I love him so very much. Thanks Pooh!
Lynn, I'm sorry you don't have the support system lots of us are fortunate to have, but you remember this one thing. You DO have us and we DO care and WILL offer any and all support we can. :-*
I've never seen your faces. I've never even heard your voices. Yet I feel so very close to each and every one of you. What a bond we SS women share. How thankful I am for all of you!
Thank you for your honestly, frankness, and most of all the love and caring I feel from all of you.
Hugs,
Vicki
"Those who have suffered understand suffering and thereby extend their hand."
As you all know, you are very fortunate to have such loving husbands, not only husbands but best friends. Something like that love doesn't happen to everyone.
Everything written in here is so true, when I was married I was so tired but not knowing why, I finally told my husband that when I go to bed it is to sleep!
Take Care
Debora
Vicki and All,
Your situation is shared by all of us. I hate that intimacy is something I now dread, and I try hard to hide that I really don't want it anymore. Sometimes it actually does not hurt me, but I still can't enjoy it for the fear of pain. Maybe there will be some help for us one day. I also have vagifem, and it helps some. I saw an ad for a new "long lasting" lubricant (by KY, I think) on tv, and I will look for that. Maybe we could try Numzit! Now there's an idea -- a numbing lubricant for sjogies!
You are not alone!
Cheryl
I can relate to you as well. What's hard for me is that my hubby and I are in our early 30's... supposed to be the prime of our sex life right but I feel like I'm cheating him in this area. It makes me feel hurt and angry at myself. I often feel like at times that I may drive him into the arms of another woman who can take care of his needs. He says that would never happen and I want to believe it but he is too young to have to go through this. Guilt overwhelms me in this area and I have cried on my way to work many mornings thinking about how I couldn't be intimate with my husband the night before because I was in just too much pain, or nauseas, or exhausted. I know exactly what you are saying.
Everyone of you has said some very touching and important things regarding a good marriage. I, too, am blessed with a wonderful husband that believes in the "for better and worse". As I read all these notes the tearing were running down my face as we lose so much with this disease and the resulting loneliness is really the one that hurts the most. Irish ;D
When I first began having serious health issues, it was a surprise as I have always been a very healthy person. Between major neuropathy issues in my feet and two knee replacements surgeries in the same year, our lives suddenly tilted and nothing was the same as before. I went from active to painfully sedate not to mention very dependent on my husband for numerous things. Frustration was a major issue about all I could no longer do or was just too plain tired and hurting to do. Pain can drain all desire from the body for doing anything. Guilt soon was holding hands with the frustration and it took awhile for me to see the big picture. Slowly but surely I began to realize that everytime I walk out the door and and my husband tells me to be really careful, when he reaches for me when walking over rough ground , when he still extends his hand to help me from a seated position or reaches to carry packages and bags that we are communicating in just as deep and loving way as we always have.
That mgjic between two people comes in many different moments in life - not always behind closed doors. Let the guilt go and learn to enjoy all the moments that bring you close no matter what form they may take.
Thanks Sal, you are truly a wise lady.
Hugs, Pooh
I am so happy that yet again I am able to find friends who are experiencing the same life altering symptoms. I have tremendous guilt, as I too have been struggling with this issue. I have been trying everything and anything to experience this part of my relationship with my husband I miss the intimacy. My dryness issues are getting worse all the time and it upsets me to think that at 35 this part of my life is over. The fear of pain and the fatigue are hard to get over. I even found it difficult to admit to my wonderful husband what is happening to my body now. I am going to see my GP this week and will again try to see if there is anything else that we can try.
Thank-you all again, this site is invaluable.
:)
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
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
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 :'(
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.....
Cheryl - not sure the Numzit would be a good idea, bearing in mind what else it might work on!!
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
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? :'(
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 ;D !
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
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.
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.
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 ;D
Kathy
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
Quote from: Katybarstool on March 18, 2009, 01:09:24 AM
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 ;D
Kathy
Kathy , tell me about E45. How much? Script? Estrogen cream?
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.
Morning Tinker
The Oestrogen cream is on prescription in the UK. The E45 cream can be bought over the counter. It is mainly used as a moisturiser, commonly by people with excema. However, my GP prescribed it for me and suggested I use it with water as a wash, and it is helpful, and non-greasy. I've also used aqueous cream, which is only about ?1.50 from shops like Bodycare and some of the supermarkets.
Kathyx