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#19750 - 03/19/08 11:03 AM worried...riske topic (maybe lol)
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
As many of you know i have nethertons... and i have all that comes with it...with the years it has gotten better but maintance is always needed. Look wise I am pretty attractive... not that anyone is ugly but i look ok... when I am relaxed and feeling safe the red is much less. Well I know this topic has been covered but I really need some support or advice... please feel free to comment as much or as little as you want.

Well, my question is of sexual nature (god i am embarresed but dont know where else to ask) I am not comfortable in my own skin and always wonder how do women or men with icthyosis manage to be comfortable in the act. How did it come about, did it come all at once or did it develop over time? I am somewhat talking to someone who I have known for a while and there is attraction but I am sooo nervous about the whole thing. One would think that at my age (26) I would be more secure but I am not. I dont want to look back and say to myself that I have missed and oportunity because of my own fear. He has already stated that the reason nothing has occurd is becuase of my own issues, because he thinks I am beatiful... when he says this I think to myself well you have not seen me in the morning all smelly and dry...
Oh my friends I am in need of some help...

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#19751 - 03/19/08 01:08 PM Re: worried...riske topic (maybe lol)
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Well, first of all don't do ANYTHING unless you two are actually in love--then ANYTHING ELSE won't matter!

You and he have known each other for a while. This means that more than likely he has already seen you at your best and at your worst. He loves you, he doesn't care that you're all red, scaly, and smelly in the morning! He says you are beautiful--now BELEIVE him!

WARNING--If you're not into explicit info, stop reading now!!!!!!! I mention actual body parts in their real and actual terms, because that's what they are. If that doesn't bother you, continue on, my friends!


Mine came about all at once. It was one of those
Him: "You want to?"
Me:"You got a condom?"
Him:"Yeah"
Me: "Then let's go!"

That's not saying you need to be THAT quick about it! LOL

Maybe for your first time or two, keep the lights off? Also, I'm not sure about Nethertons, because I have LI, but lube is VERY helpful! While, at least for me, the inside of the vagina is spared from being overly dry, my outer lips are not. The lube helps keep my outer vaginal area from chafing, especially when he first enters me. And, ichthyosis or not, some women are just naturally more dry down there than others, and it can change even for the same woman at different times of the month, even at different times of the day!

I would recommend a silicone-based lube. They are super-slick and won't dry out quickly. They are also glycerin-free. Glycerin is found in some water-based lubes and is what helps make the lube slippery. And glycerin is a type of sugar. As we all know from home ec, sugar feeds yeast. So if you're prone to yeast infections, or even bacterial infections, I'd stay away from any lube that contains glycerin.

And don't use anything like Vaseline. While it may be great for our skin, it is not great for the vagina. The vagina is a self-cleaning machine, but it has a hard time cleaning out vaseline. It won't absorb into your body like regular lube, and it can even harbor bacteria, something you DON'T want in your vagina!

Hopefully that helps. If you have any other questions, or want more details/help, please email me!
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#19752 - 03/19/08 03:56 PM Re: worried...riske topic (maybe lol)
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
thanks [img]http://www.ichthyosis.com/ubb/smile.gif[/img] very informative ... I knew it wouldnt hurt to ask

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#19753 - 03/19/08 04:41 PM Re: worried...riske topic (maybe lol)
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Well, there's only so much one can say on an open, public forum!

But ask away! Sex is a very important aspect of any relationship, skin condition or not! Even with ich, we're still human and we have human needs and human drives!
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#19754 - 03/19/08 11:04 PM Re: worried...riske topic (maybe lol)
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
My husband has something that resembles EHK. His skin is very dry and has tight plate scale that doesn't come off unless it is wet and rubbed, such as in a shower, or filed off with sandpaper. It affects ALL parts of his body, but his hands and feet are the worst.

Since I'm on the receiving end, I have discovered that doing anything without soap and water beforehand causes a yeast infection a few days later. Apparently, the thicker skin harbors enough skin bacteria and yeast that it throws my normal flora off.

I second the use of lube. Female natural lube goes up and down depending on where you are in your monthly cycle. Not surprisingly, when you have a lot of natural slime, it's because you are ovulating and more likely to get pregnant. I am not sure how this is impacted by the NS. I would imagine that since dehydration is always an issue for you, you would have less natural lube. (water+an enzyme called mucin=mucus, same stuff in your nose, stomach and vagina).

I've been with my husband for nearly 15 years. At first, he was pretty awkward about himself, too, and we went almost 5 years before making the leap. A lot of that was me, though. He had concerns about his personal smell and making me uncomfortable with his skin as it is. Even now he reminds me to watch out for his knees so I don't get an abrasion from them. We moved forward because I loved him for him and I wasn't concerned about his skin. He is smart, funny, likes the same things I do and is generally my match.

Honestly, he is smelly and dry in the mornings, but that's just the way he is. I don't really see it as any different than a guy with a hairy chest, bald, bad morning breath, snores or whathaveyou. It's who you are, and you look past it for someone you love for every other reason.

I currently have 3 kids with him, and I'm pregnant with #4. It wouldn't have been possible if all I worried about was his skin problem.

It sounds like your guy has been very patient and is willing (as if any guy isn't!). All you can really do is talk to him. Take it a step at a time (fondling, fooling around, oral, whatever), or take the plunge, as you are ready.

One fair bit of warning - the first time can be pretty painful or perfectly fine, and you might have some bleeding the next morning. No one warned me about that, so it was a bit of a surprise. I think it has to do with the hymen breaking. Many girls break it by doing sports or something, but some are intact at first intercourse.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#19755 - 05/29/08 02:49 PM Re: worried...riske topic (maybe lol)
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I was 21 my first time, and it was with someone I'd already know for three years. Same issue "the reason nothing has happened before is because YOU (meaning me) are the one that has a problem with your skin."

LOTSA lube. I find the gel/jellys better than the more fluid stuff. My personal favorite is called "Just Like Me" made by the company Pure Romance.

Sex is not like it is in the movies. Don't get me wrong, it can feel reeeallly good though not always the first time. That doesn't mean the first time will be bad, but I'd say take it slow the first time. As in, if you have to be somewhere in the next few hours, or early in the morning, maybe it's better to wait 'til you both have many many hours you can spend together. That way there is no pressure to hurry.

IMHO, it's best if you're with someone you can have fun with and care about. Sex is funny, silly and messy in addition to pleasurable. Laughter is always a good component, and don't take yourself or your partner seriously during sex. If one of you wants lights on and the other doesn't, compromise and have candles.

Don't be afraid to speak up and say "I want, I like, please do" and don't be afraid to say "That just doesn't feel right.." etc. Anytime you can let your partner know you're enjoying what's happening ensures that such things happen again.

Sex gets better over time. Personally I think people that say sex gets worse or goes away when you're married probably aren't in a healthy marriage. Sex with someone you care about really improves over time because you learn each other's bodies more and you get better doing things that please one another. Plus you get more comfortable communicating both verbally and physically.

I have yet to know anyone that looks great when they wake up in the morning. I had sleepovers as a kid, attended summer camp, have been with my husband for going on 12 years, have had houseguests. EVERYBODY smells funky and doesn't look their best in the morning, not just you. So don't worry about that part, believe me, after having sex with somebody, the two of you will have been about as intimate as possible so how you look the next morning is no biggie.

I don't think you need to love someone to have sex with them, but I think it's very important to be good friends. I am not wired for one night stands. Some people are, but I'm not, so I can't speak about that.



------------------
I am female, and was born in 1972 with Lamellar Ichthyosis in case you were wondering.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#28284 - 03/16/12 07:47 PM Re: worried...riske topic (maybe lol) [Re: didi4nyc]
Anonymous
Unregistered


I got into my first relationship when i was 19 and, because of my skin, it was hard to believe that someone thought i was beautiful. At the time my doctors were only telling me since birth that my showers were too long or that i was using to much soap. I was lacking in confidence and was pretty self conscious and it took me a long time to open up and even longer to get to intimacy but, by the time it happened, I realized he loved me for me and he didn't seem to care about my skin at all. If he really cares about you then nothing else should matter in or out of the bedroom. I would wait though. We waited almost 3 years because we both had the belief that the first time would be the person we would spend the rest of our life with. 9 years later and we are getting married in 2 months. And, thanks to him, I finally saw a dermatologist who diagnosed me. Now I feel more confident. Make sure you feel the same about yourself. Don't jump too fast!

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#28338 - 04/18/12 02:35 PM Re: worried...riske topic (maybe lol) [Re: didi4nyc]
Anonymous
Unregistered


Relax. Play with something like baby oil or some other body lotion. Spend some foreplay just massaging and such. It gives you an excuse for a rub down.

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#28340 - 04/19/12 12:29 PM Re: worried...riske topic (maybe lol) [Re: didi4nyc]
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
wow, I re-read this, its like my journal lol, I initiated this topic about 4 years ago! I am 30 now. I decided I was not ready at that time. It took me about 2 more years (28 years old) to really feel much more comfortable and ready. The first time was a bit awkward, exciting, and sweet all in one, but I think that was normal to have a mixture of feelings.

Its interesting how having ICH can make me feel like the only one in the world who is going through certain things and I did not realize at the time that as much as I was nervous about my skin issue, it was also a self esteem issue and normal growing pains. I have grown up (and still growing up) a lot since that post but it is nice to see how far I have come. Again thank you

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