Sex and Sjogrens..

[Carolina]

without the details?

We LOVE details.


OK

I use topical estrogel on my arm.  I can't use the estrogen on my 'naughty bits" because I'm allergic to it.

And I can't take the estrotest pill, which is a combination of estrogen and testosterone because of the same allergy.   This estrotest pill exists and my marvelous GYN in El Paso prescribed it for me.  Alas I was allergic to it.

BUT I can use topical estrogel on  my arm, and topical testosterone on  my arm as well.

I have the estrogel from my gyn, and my husband has the topical testosterone from his GP.  We get the estrogel through the regular mail order drug place, and the testosterone gel from Women's International Pharmacy.

I use his testosterone, tho' one of my GYN's prescribed it for me long ago.  There is even a testosterone that you dissolve under your tongue, but it tastes nasty.  Trust me on this

Both work to keep hormone levels at premenopausal levels and to increase general feelings of well being and health and sexual desire.

The lack of lubrication we solve with baby oil, but I'm sure there are a zillion ways.  My mother always said to use your own saliva but of course I don't have that much saliva any more!

Hope this isn't too detailed!

Between taking antidepressants, pain, and dryness, it is hard to keep things "on track' as it were.  But it's worth the effort to try to restore my original levels of pleasure and desire.

The key is the willingness to be intimate and it doesn't make alot of difference HOW you get there as long as you try and show caring and love.

kisses

Carolina

[Billydude]

Yikes.....eczema on the penis doesn't sound like fun.   I had poison oak there once.  The constant scratching was embarrassing but at least it looked bigger from the swelling.

[irish]

You put the pill iin your mouth and the gel on your arm. Yikes, I think I am in the wrong discussion group!!!!!!Irish

[familytradition]

Now this is a topic that I have current problems with!  My poor husband is just hoping that we get help before too much time goes by.  Plain KY Gelly works for us with no irritation, but I also have something called Interstatial Cystitis and Vulvar Vestibulitis, which translates into PAIN before, during, and after, so its hard to see the light at the end of the tunnel here....
I recently have been seeing a gyno/urologist though, and she thinks that something called Interstem Therapy could help with a lot of the pain.  Otherwise, I am applying lidocane cream and counting down the seconds, and that's not the way we should have to feel.  Interstem Therapy is a pacemaker for your bladder that helps with pelvic floor spasms that cause the urgency.  I am actually getting the trial version installed in the next week... I will post how it makes me feel.  The only problem will be that with a pacemaker I can't get MRIs which is a problem because I have spinal problems.  The neurologist is trying to get updated ones before the actual implant is in, just in case I have an other issues that would prevent it.  You are definitely not alone in your dilemma, and I hope so much that the Interstem Therapy will help the sex issue too.  I will keep posting.

[wiccagal]

wow thanks guys.. lots to think about and try!!!   plus its totally reassuring to know I am not the only one with these issues and thoughts..   

[magistramarla]

I'm a little late to this party, but we've found that the His 'N Hers lubrications by KY work pretty much as advertised and don't irritate either one of us.
I've also found that I like the Replens samples that I brought home from the Sjogren's conference.
For me, a week without sex is like a day without coffee - gives me the jitters.
Marla

[cactusrose]

Now this is a topic that I have current problems with!  My poor husband is just hoping that we get help before too much time goes by.  Plain KY Gelly works for us with no irritation, but I also have something called Interstatial Cystitis and Vulvar Vestibulitis, which translates into PAIN before, during, and after, so its hard to see the light at the end of the tunnel here....
I recently have been seeing a gyno/urologist though, and she thinks that something called Interstem Therapy could help with a lot of the pain.  Otherwise, I am applying lidocane cream and counting down the seconds, and that's not the way we should have to feel.  Interstem Therapy is a pacemaker for your bladder that helps with pelvic floor spasms that cause the urgency.  I am actually getting the trial version installed in the next week... I will post how it makes me feel.  The only problem will be that with a pacemaker I can't get MRIs which is a problem because I have spinal problems.  The neurologist is trying to get updated ones before the actual implant is in, just in case I have an other issues that would prevent it.  You are definitely not alone in your dilemma, and I hope so much that the Interstem Therapy will help the sex issue too.  I will keep posting.

I have very painful intercourse too and a very demanding bladder, so I'd be very interested if you could update on your situation when you get the Interstem. Good luck with it, anyway!

[kwolfsheimer]

I have to tell you guys, that this is a conversation that i needed.

I do use Atro Glide, but it gets gummy with friction  . I have actually found the K-Y warming gel to be pretty good.  I can't even spit at night so forget saliva!!

As far as pain, nights are horrible for me. I usually take a sleeping pill to get through the night but we have teen kids so i can't wait until 10:00 to think about sex. I'm crashed out by then. So on weekend, I will take a Tramadol (Ultram).  It takes away some of my hip pain (doesn't do anything for finger and toe joints tho). It also wakes me up at 1:00 AM so I will sometimes wake my husband up. He considers Tramadol a God-send.

I feel like my intimacy has been obliterated by this awful disease.  I feel so bad and hurt so bad. I would give anything to feel good again.  I know that my husband loves me and luckily, he is 11 years older than me, but I feel like he must get tired of me. I am such a fud-- in bed by 9:00, tired ALL the time, don't feel like going out anywhere. I have sexual desire but I wish I could take my brain out of this body!!

[kwolfsheimer]

PS--

I like the cooking oil idea. And after Memorial Day weekend in the sun, I would look and smell like fried chicken!

[navydad]

I'm sure you've not heard this talked about but I believe men have a sort of dryness as well.   There is sort of a "pre" lubricant that men expell but I've noticed that I'm not one that ever experiences this.  I'm struggling here to try to describe it in a delicate way.   Let me just say thay I may be the first to report.   Men have dryness there too.

I know what your talking about Billy,,, I (used) to have that,, but I;m dry now,,, and sex?,, what the heck is that,, I;ve heard of it and sort of remember it from a former life,,, SIGH

[LeoLady]

   Inter-stem???    That just struck me as a funny name, considering the discussion.  Tramadol and KY for me!

[Joe S.]

I do not understand this very well. What is "Sex"? I have a vague memory of something from 30 years ago. I think it was sex. It happened twice and I have two daughters. Is that what you are talking about?

[Billydude]

Please tell me thats not going away as well.  Thats the only thing on me that functions well.

[YYC_ Mommy]

I feel like my intimacy has been obliterated by this awful disease.  I feel so bad and hurt so bad. I would give anything to feel good again.  I know that my husband loves me and luckily, he is 11 years older than me, but I feel like he must get tired of me. I am such a fud-- in bed by 9:00, tired ALL the time, don't feel like going out anywhere. I have sexual desire but I wish I could take my brain out of this body!!

I can so relate to this. In fact I had a conversation with my husband a few days ago. I am in so much pain and just trying to do everything I need to get done in a day. I explained the spoon theory and suggested that maybe if he could help me out with a few things here and there maybe by the end of the night I would have some energy left.

I honestly don't think our talk helped. I explained that I do have the desire but that my body is just sore, I am in pain and I am so tired. I think on some level he wants me to be the person that I use to be and I am not sure if I will ever be that person again. I am not saying that is bad, maybe I would like to be without the pain but I have been learning so much through all of this about me and my strength, living in the moment and appreciating EVERYTHING. I just wish that I could fix this part with my husband.

[212hjet]

Thanks to everyone commenting here today.  Since we are all in this boat together, one way or another..we can help each other even if it some comment makes us laugh....thanks for making me chuckle a couple times...very loudly...I truly needed that today.
Everyone have a great weekend and find something to laugh about.  Life is great even with challenges
Richard