Problems with sexual relations

[stressed&tiredout]

Do any of the women here have problems having sex? I seem to be completly unable anymore. I have sjogrens, and major problems with hydration, to the point that i have to have IV hydration on a daily basis at home. Being so sick with this disease is hard enough on a relationship, being unable to have sex just makes it a million times worse!! I have talked to a Doctor about a surgical procedure that is available for extreme cases, but he gave me other things to try before he got into great detail about this. Has anyone here ever heard anything about this procedure and what it would intale? I am willing to try anything at this point. I think Intimacy is very important in a relationship, and although I realize you can have this, without actually having sex, I don't think you can quite achieve the closeness you can when making love to your husband. Any insight into this problem would be GREATLY appreciated. style_emoticons/<#EMO_DIR#>/Thanx.gif

[confused1]

Hi and welcome to the boards,

I also have Sjogren's -- though not as severely as you apparently. I can't imagine having to IV hydrate daily! I do however have almost constant nerve pain in my face and sometimes in the skin of my torso and over joints, apparently caused by my Sjogren's. And in the past six months I have begun to experience nerve pain vaginally. Mostly it's on contact but sometimes it just plain throbs and burns and hurts like my face. I can tell you that sex is not pleasant most of the time.

I have no insight. My husband is wonderful. We have sex without intercourse pretty often. I must confess that while my sex drive is still strong, my energy levels make me wish that it would just go away. I feel guilty for this. I also believe that sexual intimicy is important to a marriage. I work hard to be intimate with my husband, but I don't always enjoy it the way I used to and sometimes I just plain resent the fact that he gets pleasure and I get to plan, hydrate daily, moisturize, work hard to save enough energy for when he's ready, and still be able to show playfullness and joy at our relationship.

Wish I could help you. I wish I could change the way things are, both physically and between men and women (or any two people in a sexual relationship). We probably should get together and write a book, but what on earth would we tell people? style_emoticons/<#EMO_DIR#>/tongue.gif

Keep posting. Come to chat. Keep communicating with us. It helps to have friends who know and understand.

Sunny

[alobreto]

What an awful situation to be in. style_emoticons/<#EMO_DIR#>/sad.gif

I don't have Sjogren's, but I do have enough pain to make intimacy difficult. I can also relate with the fatigue and trying to save enough energy to be more than a motionless lump.

It sounds like in addition to your dryness that pain is a problem for you, too. Do you have a pain doctor to help with that. A little before medication can go a long way towards improving things, as well as medication for the following 24 hours while things recover. It doesn't make the problem go away, but it can help make physical intimacy possible along with the inclusion of enough lubrication.

As for the energy problem, hubby and I talked about it. He knows that I have to plan just about every activity and that if I overdo in one area, another area will suffer. Maybe that shampoo or shower won't happen for me that day. Or maybe the supper dishes will stay in the sink till morning.

Because of that, hubby gives me advance notice that he's feeling frisky, usually the night before an encounter. I admit it takes the spontaneity out of things entirely, but better that than to give up that important part of our relationship.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[pauline1946]

I guess i'm one of the lucky one's. my husband was given a drug
that caused him to become impotent before i got sick.

lonnnnng time ago. there is no way i could have a sexual relationship
now, but then sex isnt all there is to a relationship.

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi, and welcome. I also have sjrogrens and I am always seen drinking water out of my trusty
water bottle. I missed having sex with my hubby, and finally talked with my Rheumy, and my GYN,
they both told me to get KY liquid and put that on me a little b/4 we were going to get frisky. By
the way, there are two kinds now, the regular liquid and the warming liquid kind, the last one is my
favorite. For us, this is enough to work and there is no pain, I could live without having sex, but I wouldn't want to. Hope this helps.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[oohloo]

i think that we all find it difficult. if we arent in pain, or we havent got the energy, because we are so tired, then our men dont know what to do for the best. I feel sorry for them they dont know wether they are coming or going (excuse the coming bit!). Its not the most important thing in a relationship,but just because weve got an illness why shouldnt we want it.This illness has taken so much from us already... I just want to feel sexy again and attractive to my husband. We have to think of them in all of this.
Take good care.
Lov Lou.xxx
style_emoticons/<#EMO_DIR#>/highfive.gif

[Lily]

(((((((((((((((hugs)))))))))))))) to you style_emoticons/<#EMO_DIR#>/sad.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

The others have given you good advice about the need sometimes for planning, the pain control issues and getting enough rest, sure it takes the spontaneity out of it but its better than not indulging at all.

I'm not familiar with the procedure your doctor has mentioned and cant really comment on that. If one of the things he's suggesting to try before going that route is Replens vaginal lubricant then please give it a shot, its meant to be one of the best and will also help in the long term to keep tissues more hydrated.

I had a period of this happening but thankfully thats now gone as my meds regime seems to be helping the underlying diseases (SLE & Sjogrens), but pain was still an issue too. Once that was attended to things got much better. Angela's suggestion of timing of pain meds so they kick in just before, but not enough to sedate you and then following up in the next couple of days is a good one. It does help.

This is such an important part of any relationship and whilst its hard to broach this subject with your doctor it is something he should understand and want to help you with. Please talk to him about it more and you will probably find there are two factors here, the dryness (which sounds extreme in your case) and pain and fatigue. There are ways around it.

Sending hugs,

love
Lily

[stressed&tiredout]

<div class='quotetop'>QUOTE(Lily @ Apr 5 2006, 06:05 PM) Quoted post</div><div class='quotemain'>
(((((((((((((((hugs)))))))))))))) to you style_emoticons/<#EMO_DIR#>/sad.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif

The others have given you good advice about the need sometimes for planning, the pain control issues and getting enough rest, sure it takes the spontaneity out of it but its better than not indulging at all.

I'm not familiar with the procedure your doctor has mentioned and cant really comment on that. If one of the things he's suggesting to try before going that route is Replens vaginal lubricant then please give it a shot, its meant to be one of the best and will also help in the long term to keep tissues more hydrated.

I had a period of this happening but thankfully thats now gone as my meds regime seems to be helping the underlying diseases (SLE & Sjogrens), but pain was still an issue too. Once that was attended to things got much better. Angela's suggestion of timing of pain meds so they kick in just before, but not enough to sedate you and then following up in the next couple of days is a good one. It does help.

This is such an important part of any relationship and whilst its hard to broach this subject with your doctor it is something he should understand and want to help you with. Please talk to him about it more and you will probably find there are two factors here, the dryness (which sounds extreme in your case) and pain and fatigue. There are ways around it.

Sending hugs,

love
Lily
[/b][/quote]


Thank you all for your wonderful advice. I'm not suprised that nobody has heard about the surgury i mentioned. I looked all over the internet, and can't find anything about it. I am going to see Doctor next week, so will let you all know for future reference in case you ever see the question again. Lily, thank you for the different name in lubricants, i have never heard of it, do you have to go somewhere special to purchase it? I have tried all the ky's and stuff at the drug store. Thank you ALL for your input and caring! style_emoticons/<#EMO_DIR#>/Thanx.gif

[macfamily53]

Wow

I did not even know of any knd of surgery for this problem either. Yes i do also have sjogrens and problem with the extreme burning sometimes. Actually a lot at times. I did not know what it was for years. They told me it was from my overies style_emoticons/<#EMO_DIR#>/biggrin.gif before i knew i even had lupus this has been going on. Well anyway my hubby is not a young man and not slowing down anytime soon style_emoticons/<#EMO_DIR#>/biggrin.gif . I guess that is good thing but i need to find these lubricants to see if it helps make a difference. I think it is more of an imberessing thing to buy them you know.Well i wish you luck with the surgeri stressed if you do decide to go along with it.

Tammy

P.SI think a book would be a lot of fun if anything sunny style_emoticons/<#EMO_DIR#>/biggrin.gif

[watslove]

I wonder why I didn't experienced that dryness yet.
Watslove

[Clare.T]

I am wondering if this problem is what's called vulvodynia and vulval vestibulitis. Here's one of many websites that deal with this sort of problem. It seems common in fibro too. It mentions an operation as last resort and other possible treatments.

http://www.womenshealthmatters.ca/centres/...nt/surgery.html (http://www.womenshealthmatters.ca/centres/pelvic_health/vulvodynia/treatment/surgery.html)

Best of Luck


Clare

[Lily]

Hi,

Thats something that could easily be overlooked as a cause Clare its grossly undiagnosed I hear. So ladies worth getting a gyn to thoroughly check for that.


I know that Replens can be purchased at the Pharmacy here in Australia and I assume the same in the UK. And probably USA as well. There was a paper presented to the Orlando Menopause Society on it, its v useful for those suffering Menopause, but also v helpful for dryness associated with Sjogrens. It can actually improve the cell cytology of the vaginal walls, not just provide a more comfortable experience.


http://jcp.bmjjournals.com/cgi/content/full/55/6/446

Watslove, if you dont suffer from Sjogrens or its just a secondary condition to your Lupus then its unlikely to be a problem for you. Also you are quite young from what I understand?

love
Lily

[watslove]

yes,lily. I am 24 years old.





<div class='quotetop'>QUOTE(Lily @ Apr 7 2006, 03:39 AM) Quoted post</div><div class='quotemain'>
Hi,

Thats something that could easily be overlooked as a cause Clare its grossly undiagnosed I hear. So ladies worth getting a gyn to thoroughly check for that.


I know that Replens can be purchased at the Pharmacy here in Australia and I assume the same in the UK. And probably USA as well. There was a paper presented to the Orlando Menopause Society on it, its v useful for those suffering Menopause, but also v helpful for dryness associated with Sjogrens. It can actually improve the cell cytology of the vaginal walls, not just provide a more comfortable experience.


http://jcp.bmjjournals.com/cgi/content/full/55/6/446

Watslove, if you dont suffer from Sjogrens or its just a secondary condition to your Lupus then its unlikely to be a problem for you. Also you are quite young from what I understand?

love
Lily
[/b][/quote]

[vickijo]

I have been finding intimacy difficult lately myself....glad I'm not alone, because I feel like I'm letting my husband down.

My husband had a hormonal problem several yrs ago and wasn't able to have sex for quite awhile until they got him regulated.

I mentioned this to him one day....when he was feeling neglected....that he needed to be patient with me now like I was for him then.....and he has been more understanding lately.

Now I just have to try and "make it happen"....
style_emoticons/<#EMO_DIR#>/wacko.gif

Hang in there!
Vicki

[balla]

<span style="color:#FF0000"><span style="font-size:14pt;line-height:100%"> style_emoticons/<#EMO_DIR#>/foryou.gif I feel the same as you i beleive that the relationship with your partner is so special its so bad when the problem is gong to be life lng.
I started with very dry problems at 26 i went to my G.P as every time me and my husband tried i would bleed and be so sore i was finding it hard to go to the toilet. well at 26 thought i would have years before problems like that would start my G.P first reply was it was my age lol only 26.
then i asked to see gynocologist his thought was due to my birth of my angel baby some years earlier due to me needing cutting he said scare tissue and that i could have op and recut to open it up further so like a fool i did due to wanting to be normal with my hubby,well guess what didn't work so then it wasn't due to that so nothing more doc could do, so my G.P gave me a tube of gel and said this should sort things out well we tried it did help while we were close but when i washed my self and went to toilet was still skin missing.
I had hysterectomy in 2002 due to other problems thats sorted one thing out i have no bleeds everyweek thank god.But the problem is the same with my dryness so i would love to know what else is available.
since then i have been diagnoised with sjogrens so that was the cause all the time no need for op didn't work anyway. TRYED ALL GELS. We went through a realy bad time me and my hubby as he thought it was him and not doing enough but that is so untrue couldn't get a more thoughtful lover.

so i do hope the problems you have can get some answers if so please let me know how thanx </span></span><span style="font-size:18pt;line-height:100%">ballax</span> style_emoticons/<#EMO_DIR#>/foryou.gif

feel so bad as he does most things for me now due to illness that the relationship as gone to nurse maid rather than husband and wife.

[bluebecka]

I too have the same pain and burning with sex. I have never been dx with sjogrens but my ob dr dx me with Lichen Sclerosis and I use lidocaine gel(rx) at night and rotate it with clobetasol propionate cream(rx)
It seems to help some but the fatigue and body pain, especially in my hips continues. I usually take a pain med shortly before I plan(sad, huh) to have sex. I'm 33 and my hubby would have sex every day if I was up to it. I agree that it can put a strain on marriage. Fortunately my hubby is understanding most of the time. As for me, I'm so tired that most of the time I could do without, I think I have a low libido right now too, but really make an effort.

I have never heard of any surgery, could you let me know the name of it. I like to research things to have knowledge of what might be available.
I hope your doctor appt went good and you are finding some relief.
Rebecca in Oregon
Dx with Lupus,fibro,lichen sclerosis,inflammatory arthritis,osteopenia,migraines,depression, dehydration,and some skin rash thing on my hands I don't remember the name dis......... exema (my newest problem)
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[lupy lulu]

Give me a good magazine and a Hot Chocolate anyday! style_emoticons/<#EMO_DIR#>/wink.gif

Shouldnt be feeling like this at 29 years old should I ?

Dont which is more to blame...the drugs or the Lupus style_emoticons/<#EMO_DIR#>/hissy1.gif

Love Lucy x

[peonyprincess]

Hoe do I want to put this politely....................I had a strong sexual appetite prior to my Lupus coming out of remission. Now, the drive has been chagned to getting out of bed and doing basic household chores, etc. I feel totally useless at times when my hubby wants to "be friends". However, I have been blessed with a wonderful man who says he loves me no matter what. While the intimacy of sex is not always there, we can still snuggle, hold hands, and give each other a pinch on the bottom to let the other know that we are thinking about them. Now, I will admit there are days that I "give in" knowing full well that I really do not want "to play", however, the days that I do..............he had better look out. style_emoticons/<#EMO_DIR#>/biggrin.gif style_emoticons/<#EMO_DIR#>/afraid.gif . Yes, because of my Sjogrens, we now have to use a lubricant, but that is okay by me and my hubby seems to enjoy it as well. Imagination is a wonderful thing.

While sexual relations between a man and his wife form a very strong bond, I have come to find that there are a multitude of other ways to show each other just how much you love them. Lupus takes away so many things that come naturally to us. However, by having Lupus, it also makes us find other alternatives to doing or accomplishing certain tasks. Not only does this keep our minds active, it shows that no matter what we are survivors. When we want something, we will find a way to have it. It has opened doors for us that we never knew existed. So I guess in a strange way, I have to say thank you for that. I am not always happy being me and what I have become, I am happy that I am here and can experience life albeit a little differently and more challenging than the average Joe. While our bodies are not at their best and not as strong as they once were, we are forced to resort back to our childhood and use our imagination, and with that we are extremely lucky.


Nancy

[frilly6]

I have been perscribed Vagifem for this problem, it works well. It is a pessary inserted 2- 3 times a week and is just for this problem


[url=http://www.vagifem.com/] It is all on the site every little piece of information


hugs

frilly

It says it is for menopause dryness but the symptoms we all suffer from are very much the same, I have had no reactions to it altho I have had reactions to creams. It has also helped prevent UTI infections caused by dryness. I have had little help from gels etc. No bleeding now no splitting of skin or soreness when going to the toilet.

Must admit tho I think closeness , cuddles, massage and understanding beats sex any day LOL


hugs again

[sue90x]

WOW have you hit a topic here!

I also have sjroens nothing like as serious as yours though, I have bad pain during penetration, you've

helped me here I've never even associated it with 'our' problems I just thought it was yet again something

else to add to the seemingly never ending list of my physical complaints. It feels like I've got open blisters

really high up that make it impossible I see gynae next week too thank-you, I might be able to get

something to help?!

take care

Suex

[northstandgirlie]

Hey! style_emoticons/<#EMO_DIR#>/foryou.gif

When I was first diagnosed with Sjogrens this message board was a Godsend. I just hope it helps you too, knowing all the pain, discomfort and bother is not just yours to suffer alone!

Our sex life waned severly after being diagnosed with endometriosis and now with the Sjogrens the pain is more intense, primarily due to the dryness.

I use either "Senselle" (manufactured by Durex I think) for around the vaginal area and "Diprobase" (just a basic emollient) around the vulval area so the skin doesn't tear if stretched.

One thing that happens now that I hadn't had in the past was severe muscle spasm of my vagina. It feels like someone is squuzing my whole womb, etc inside of me. Does anyone else get this? Iwas told by the hospital just to take painkillers and a hot water bottle as they didn't know why it happens!

Fingers crossed that your partner is an understanding one. style_emoticons/<#EMO_DIR#>/flowers.gif style_emoticons/<#EMO_DIR#>/thumbs-up.gif

Rita x