frustrating and sad

[sphinx]

I am so upset about sex in general. Being tired, not "in the mood", feeling down on myself...all those are bad enough, but the pain, now *that* is just horrible! Between the IC, PFD, arthritis and fibro it is just not fun anymore! I try to just avoid it, and thankfully have the most wonderful husband in the world. He is very patient! If I can manage to concentrate on the moment, I can sometimes ignore the pain "in the moment" with the increased endorphins and such......but afterwards?! OUCH! Mega, mega flare! We don't make love often, and when we do I am in so much pain for days. I feel bad enough when I gently refuse sex, I certainly would feel bad letting him know how much pain it puts me in! Then he'd feel so bad he'd never even try! And that would be sad.

I am just venting, really. I'm sure I am not alone, but it can really feel like the loneliest thing in the world, ya know?

[GriffsMommy]

I know how you feel. I can actually be feeling decent and then have sex and it is almost always results in a flare. I have learned to take all the meds I have before hand and to affoid certain postions.

I feel like a horrible wife many times as that part of my marriage has suffered so much but hubby really does understand that it's not my fault and I can't help it. Still doesn't help the fact it makes me feel crummy. So you def are not alone :grouphug:

[sphinx]

I know how you feel. I can actually be feeling decent and then have sex and it is almost always results in a flare. I have learned to take all the meds I have before hand and to affoid certain postions.

I feel like a horrible wife many times as that part of my marriage has suffered so much but hubby really does understand that it's not my fault and I can't help it. Still doesn't help the fact it makes me feel crummy. So you def are not alone :grouphug:

If possible I try to take pain meds before-hand, but I am hardly ever in the mood, so it tends to be a spontaneous thing. Positioning would probably be helpful but my arthritis gives me limitations. It truly is disheartening! Thanks for replying though, it helps to know I'm not alone, although I hate to hear of others in the same situation!

[GriffsMommy]

Oh yea, people are in the same situation. It is depressing at times. I tell hubby I'm in the mood when we do have sex but he knows that I'm normally not. It's hard to be in the mood when you hurt all the time and know that if you weren't hurting before the sex you'll be hurting after.

[snak]

Hello all...this is my first time on the ICN so bear with me. I am a 36-year-old married mother of a 10 month old son. I was diagnosed with IC 10 years ago and have been through most of the meds and various therapies to no avail. I finally received the sacral nerve implant/neruomodulator about a year and a half ago and it has helped me quite a bit.
My problem is sex....I don't want it, haven't wanted it for awhile and quite honestly have no interest in it or anything relared to it. I feel terribly guilty and my marriage is suffering. My husband has been supportive to say the least, but he is getting tired of being celibate. I don't blame him at all, he's a 34 year old guy!
I am not sure what I am asking, I guess I am just venting about this stupid disease and all that is has robbed me of. Thank God for the implant, otherwise I would probably be in a looney bin somewhere. It has decreased my pain levels by about 50%. I am not taking any medication for it right not, just pain meds (Tylenol #3's) when needed, which lately has been daily.
Does anyone else experience painful sex, and/or have no interest in sex? I feel like a freak, I know I should be into it, but I am just not. It hurts, and is not enjoyable at all. I don't even like foreplay, or kissing/touching. I have completely pulled away and I worry my husband is going to either cheat on me or leave me. Well, I don't really think that but who knows if he has to go another year with no sex life (not even a little bit). HELP!!!!

[sphinx]

It's a huge problem with me.......from the get go, I have very, very low desire. I think a lot of it is psychological, for me anyway, maybe because I know how I will feel afterwards. But who knows? But I don't even want to kiss or cuddle either. Part of me thinks it will just lead to sex so I should just avoid it. Another part of me just doesn't like it! I mean, what kind of person doesn't like to kiss or cuddle with their spouse? Well, me I guess! In my case, the fibro more so than the RA is a problem because just hugging can hurt.

Every now and then I will get a spark of being "in the mood". Even if I am tired or exhausted I try to go for it, because I know it doesn't happen much. So I enjoy that time, and face the music later (pain, etc.)

I'm not the best person to talk to about this, because I honestly do not feel I handle the situation well at all. I have the same fears as you do, feel the same things (like I must be a "freak") and haven't really come to terms with it. But i did want to post and let you know you aren't alone.


Hello all...this is my first time on the ICN so bear with me. I am a 36-year-old married mother of a 10 month old son. I was diagnosed with IC 10 years ago and have been through most of the meds and various therapies to no avail. I finally received the sacral nerve implant/neruomodulator about a year and a half ago and it has helped me quite a bit.
My problem is sex....I don't want it, haven't wanted it for awhile and quite honestly have no interest in it or anything relared to it. I feel terribly guilty and my marriage is suffering. My husband has been supportive to say the least, but he is getting tired of being celibate. I don't blame him at all, he's a 34 year old guy!
I am not sure what I am asking, I guess I am just venting about this stupid disease and all that is has robbed me of. Thank God for the implant, otherwise I would probably be in a looney bin somewhere. It has decreased my pain levels by about 50%. I am not taking any medication for it right not, just pain meds (Tylenol #3's) when needed, which lately has been daily.
Does anyone else experience painful sex, and/or have no interest in sex? I feel like a freak, I know I should be into it, but I am just not. It hurts, and is not enjoyable at all. I don't even like foreplay, or kissing/touching. I have completely pulled away and I worry my husband is going to either cheat on me or leave me. Well, I don't really think that but who knows if he has to go another year with no sex life (not even a little bit). HELP!!!!

[leelee88]

Hello all
I can truly relate to all of you!
I feel so bad and unworthy to this great man I have married. He is so patient and loving and kind.
But, We have learned that when intercourse is just not possible that you can make love other ways. There is another great web site Jill the founder of the ICN has created just for topics like this if anyone would be interested. I know I got some wonderful advice over there and it has truly helped my sex life, which I didnt think I could have with IC. Heres the link.. And like I said alot of the same wonderful people that are here are over there to its just more on this topic instead of IC:smile tee
http://www.whensexhurts.com/forum/

[snak]

Thanks so much for your reply. Just hearing that someone else is experiencing what I am makes me feel less isolated and abnormal. I will check out the link you provided as well! Thanks again.......

[snak]

Thank-you for your response. I am really not dealing with this well either. I have gone to see a marriage counsellor hoping that somehow it will help. I just want to be normal, and am tired of being in pain and feeling guilty all the time. I don't even feel like a woman sometimes! I long to have wild sex like we used to "back in the day" - before IC, of course. I would even settle for just sex, it doesn't have to be wild! My hubby is the best, most men would not be able to manage 4 years of a sexless marriage. Thank-you for making me feel like it's not only me going through this, I really appreciate it.

[devastated]

I know i am young(Only 20) but this whole experience of getting IC has completely turned me into a different person. I am a strong, determined, mature, understanding, and compassionate woman now. Before I was alittle girl who thought life was all fun and games, i spent years messing up my life and giving my parents hell. I am so sorry for all of that. I have learned that life is a precious thing and something you dont value when you should can be taken away from you at the drop of a dime (like your health & well being). The topic that had put me into depression for months was wondering if i would ever have a sex life again. (Before my hydro it was impossible, it would send me into a flare for a week++ and i mean excrusiating(Sp?) to where i could not do anything at all but cry and wish to die. But since my hydro i have had better success, it deff causes a mild flare most of the time, but at least it is bare able now i guess. It just hurts me so bad because this summer when i was at my "Rock bottom" I met an amazing guy (who is now my boyfriend). He kept telling me how much he wanted to be with me and all this, yet i kept pushing him away because after he knew what kind of condition i was in and my life on a daily basis, i thought, why would he want to be with some one like me? Eventually i gave it a chance, and i think god sent him to me for a reason. He is everything to me, he had a hard time understanding in the beginning, but i am trying to educate him more and more each day with out him getting overwhelmed. He tells me all the time our relationship is not based on sex, that we are partners, best friends, and lovers, and that a relationship is about talking, laughing, support, and being there for each other no matter what. But deep down I know our relationship would be damn near perfect, if i didnt feel like he doesnt deserve me all the time, because i cant love him the way i want too. Sorry this was a really long post and such but I havent been able to get that out for awhile. And I am having a horrible flare today, and leaving for florida in two weeks, now i dont even wanna go im so depressed today :( :(

Hope everyone else is having a better IC day than I am.. lots of love.
~Sheena<3

[SharonA]

I know that having IC and having sex is complicated. Once you have a bad experience with sex causing you pain, you tend to push the sexual part of you into the background. Every time you do this, you end up pushing it so far back that it is hard to bring it forward. Before you know it, you are wondering, "Gee, when was the last time we made love?"

I totally understand how difficult it is to think sexually when the desire is low to nonexistent. I suffer with that also. But I have a husband who I love more than anything and who I want to satisfy and make happy. Because of that, this is what I have learned:

There are so many other ways of having sex with the one you love. Sex is not just about intercourse. It is so much more than that. It is about the act of loving the person you love. It is about pouring yourself out to please the other person. It is about giving pleasure, not just receiving pleasure. It is a time to feel close to and to cherish the person you love. A time to reach out to that person and not think about yourself.

There are so many methods of sex. Our society puts intercourse on the top of that list, when actually there are so many other methods that never end in intercourse and are a whole lot more pleasurable for a woman.

[irishnan3]

sharon what a wonderful response, you made me feel much better today.
Thanks!:smile tee

[SharonA]

You're Welcome. I am glad I could help. (((Hugs)))

[sickofmybladder]

Everytime I try to register at the "other" site - it says the registration has been disabled - anyone know how I can get a username and password issued to me?

This is a HUGE issue in my life as well - I have been married for 16 years and while my husband is understanding - I know it is effecting our relationship. I still put the good face on and go for once a week but even he knows it is painful so he hesitates and of course how good can it really be with both of us thinking about my pain......

I'm sorry so many of us have this problem but it's great to hear that others have figured out "ways around it".

Thanks

[Claredale]

That happens to me as well. I take it personally! LOL!

T83

[SharonA]

Registration for WSH has been disabled by Jill. I am not sure for how long. Until you are able to register there, go ahead and post any concerns or questions here. :)

[Berkshire Road]

I think Sharon's advice is right on, as usual, but just wanted to mention one thing. Lack of desire, feeling unworthy, and especially, not even wanting to cuddle, can sometimes be signs of depression. It might be a good idea to speak with your doctors and see if they think there's any possibility that you're depressed, because if it is depression, that is very treatable. And if it's not, then your doctors might have some other advice on the subject. I know it's not the easiest topic to bring up, but it might be worthwhile.

[Lishypaz]

Today was the first time we've tried sex in over 8-9 weeks--disatorous. I should have remembered to take pain pills. My husband now needs "help" with our sex life as well, and I know that this is my fault as we would start and it would usually end disappointingly for him, and now he has anxiety surrounding sex and needs his own meds. So, today, we are all set to go, things seems to be going well, and then I get the worst pain I have had in months--maybe 6 months. I turned up the neuro stim, took all of my meds after I ate my lovely gluten-free english muffin and here I sit. I definitely need to try to form a support group where I live. This causes frustration which leads to bickering,etc...and the day is just miserable.

We have teenagers, so there isn't a whole lot of time we can be alone together anyway, and after all the surgeries, I was "off limits" for a long time. UGHHHHHHHHHHHH! I'm supposed to be reaching sexual prime and I just avvoid, avoid, avoid. And now, I feel like I've given my husband sexual dysfunction because of my own. thank the Lord he is a good guy, but how long will that last? II know i am not the only one, but I do feel alone, especially today.

[SharonA]

Lish...

Okay...Things did not go well today. What did you learn? You learned that you still want sex. That you love your husband enough to be disappointed that things did not go as planned. That you should have taken your pain med. Wow!!! I would say that is pretty fantastic.

So what if your husband needs a med to help him function sexually. There are lots and lots of men in that same boat. It does not have to be your fault. Stop putting that kind of guilt and stress on yourself. I have heard that some men who never have had a difficult time of rising to the occasion take that stuff too. I say good for them and good for your husband. At least he cares enough to get those pills and use them so he can be with you.

So...What should you do the next time? Well, how about after you take your pain med, go about getting a glass of water, get his pill bottle out, take it to him and watch him take it. Give him a quick squeeze in a strategical area and give him a wink. Then, go into your bathroom, draw yourself a nice warm bath, let the water relax you, get into a sexy nightie and let your husband know that you are ready for him. Then, if you start to feel that the pain is coming on, don't stop. Keep it up, literally and do some things other than intercourse. Let him relax and enjoy the experience of your doing to him what feels good to him and not worrying about you at all. I don't know a person alive who would not applicate that.

I really believe that being intimate with your partner is very important and that making love does not require intercourse. I believe that it is one way of making love, but not the only way.

[karen10]

Sharon -- that helps me so much! I'm new to all this and although we have a wonderful relationship on so many levels, the sex was what I felt brought the deeply intimate moments. I'm so afraid I'll lose this, but I'm going to focus on other ways of keeping this part alive and intimate (and check out the website!).:smile tee

[Lishypaz]

Great idea! This is definitely what i will try, in a few days......let myself heal first. Thanks!