Frustrated about lack of sex

[HillaryD]

My husband and I were talking about my IC last night and he said "I guess we are never going to have sex again." He didn't say it like he was mad, just disappointed. I told him no to think that way, but deep down I wonder if we will ever be able to again. We haven't had sex in 4 months, and that's not easy. We've struggled with an intimate relationship before with my Endometriosis, but were able to get past that for a while and be pretty active, but there's been no activity since this IC has kicked in. At least with the Endo the pain was more on my right abdomen side, and we could sort of work through it, but there is no working around the pain with my IC. I honestly can't even think about sex with this pain, but I feel terrible for my husband. He is very concerned about me and is so understanding, but I know this must be difficult for him. I just wish I could get rid of this pain, especially the vulva and vaginal pain, and be back to my old self again. I just needed to get this out! Thanks for letting me get it off my chest!

[yorkyloverx3]

Hillary
It has been about 4 months for me also. Yes it is very frustrating. :frown: I am in a flare now and taking instillations 3 times a week, so I am like you ... I don't even want to think about sex.:mad: My husband and I have been through alot in our 30 year marriage, with some of the same stuff you were talking about. After my hysterectomy, I was pain free for a "little" while and sex was good again But then I started hurting with the cramping and low pelvic pain and sex burned like:cussing:
I just need to be held and without him even THINKING about it going any further.
I agree with you it is hard (on both partners) we feel quilty and they just don't know what to do with us!:confused:
Let's just hang in there together and maybe this will be ONE MORE thing we can overcome.
:grouphug: sending you a hug 'cause I know you need one.
love Denise

[HillaryD]

Denise,
Thanks for your understaning! I know that I will get past this, but waiting for it to happen is the hard part. :rolleyes: I have been on medicines for almost a month now with no relief, so hopefully when I go back to the Dr next month he will have other options for me to try, because this pain is getting unbearable. I hope that your flare stops soon and that you can get back to your sex life again! I send you hugs back!!!
:grouphug:
Love, Hillary

[yorkyloverx3]

Hillary
My husband just called to see how the instillation went this morning. I ended up yelling at him and then burst into tears. I don't know how they live with us sometimes. I don't even like living with myself.
Could you call your dr and tell them how much pain you are in, so they could get you in any sooner?
Stress doesn't help the pain. no sex makes stress worse!!
I just want my life back too
love Denise

[Katrina]

I have Endometriosis, IC, and PFD.....and occassionally can try sex theese days. It isn't going great yet but with a lot of effort it has improved tons!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Have hope....I will take a few times a years over zero. ....and those few times give me hope for more. :grouphug: :grouphug: :grouphug:

Have hope,

[HillaryD]

Katrina,
You have a very good outlook on this! You are right, a couple of times a year is much better than none at all. I will try to have a positive attitude about that! Thanks!!!

[Mimi-in-Chicagoland]

Sex can be difficult. Right now I'm having a horrible period. :banghead: Of course, penetration doesn't always have to happen to have fun. ;) Let's just say I keep a bottle of lotion by the bed...and DH goes to sleep happy. Its not always ideal, but it works for us.

[ljl765]

This stuff is very hard to hear. I was hoping that having IC would make us more kind to our own bodies. If we ignore the clear pain signal our bodies send ..that "OUCH" we get..How can we honor ourselves. My husband told me "he would rather wait for me, then be w/anyone else'.., and he never brings it up..unless I give a signal..Try this.
In 23+ years we have never strayed and things do get better w/time. But if you force your bodies to do what it clearly says it can't...it will never happen. Try being nicer to your selves..I feel badly for each and every one of you who tried sex in pain..for any reason. We didn't ask for this illness, and as I copletely understand the guilt..get past it. WE have NOTHING to be guilty about. We didn't ask for, nor do we deserve this desease..
Honor your body, honor your selves...and the signals of pain it sends..You'll be rewarded later when the pain lets up...and so will they :-)

[PikkuMyy]

I've had this disease for 3 1/2 years and although I don't have it as bad as many of you, we've had many periods of time where we couldn't have sex. My problems seem to last a day or few rather than months but there are often a few days in the week where I can't "do the deed" heeheehee...

Anyway, I just wanted to let you know that it can get better. Particularly in the past 6 months or so, we've been very active. We've experimented with all sorts of positions and alternatives to vaginal sex - used a lot of lubricant and various other "tools" of the trade. (TMI???) We've been hving a lot of fun despite my symptoms and the most important thing is that we talk about it a lot - how we feel physically, emotionally, etc. and it has brought us really close (especially because when we first got together I had a lot of issues about sex, talking about it, etc.) So in some ways this has been a blessing.

I know how you feel about feeling bad because my husband was really disappointed to but he's stuck by me and I don't feel really guilty like I used to. I'm grateful for how patient and loving he is.

I just wanted to let you know there is hope.

Emily

[ic-debra]

Hillary,

I agree with PikkuMyy and Mimi. There are other kinds of sex other than vaginal intercourse you can enjoy with your partner as well as solo sex. You can consider oral and anal sex as well as manual sex. I have tried all of these, and they are generally not going to affect your IC.

You might consider asking your husband for a massage in exchange for one of these alternatives. One thing my husband and I have done is to give each other a massage with "release," if you get my drift.

The best thing you can do is communicate with your husband and don't feel guilty, but do look for alternatives.

[HillaryD]

Thanks JJohnson79, I will give that a try! I'm hoping to get a RX for Lidocaine cream to see if that helps as well.

[debzx]

Hi

Just reading through the messages, and i am wondering IF non intrusive orgasm can still give a flare!!! the last 3 time we have had sex i have been in pain for days afterwards and had A/Bs. so am really reluctant to even go there now!! much to hubbys disappointment although like many he understands but we are both human and i agree one dosent have to have sex to release but my fear is havign an orgasm and no sex but still the flare??

suppose the only way i will know for sure is to try it!!


debzxx

[plaedes]

I'm going to say it for all of us.

AAARRRGGGHHH!!!!

This IC stuff stinks.
I am also glad to find out that I/We are not alone in the horrific adventure. well, i'm off to see if i can make it through grocery shopping today. had to leave the store the other day and the check out girl asked if i wanted an ambulance!:yikes: guess that means i looked pretty bad. anyway, good luck to you. hope you and your hubby can work through it. being honest about your feelings, physical and emotional, should help both of you find something that works.

[redstonebef]

Having the big O. sends me into a flare nearly every time. I haven't had sxx in so long see I can't even spell it. Ha.

Hugs.
redstonebef

[bluebell]

Hi, reading these posts I want to add my 2 cents. Do not give up on sex. If you are on meds like elmiron they take months to work. and sex can mean many things as long as you communicate and are honest with each other, if intercourse is painful then talk to your partner about other options, I have been on elmiron for almost a year and finally am getting my sex life back on track, I have learned many things in this last year, most importantly that my husband has no idea how i am feeling if I don't tell him and he cant help or be expected to do certian things if he doesn't know what i am thinking and feeling. I have a wonderfully understanding husband, but we both get frustrated at times, usually I am the one who initates sex when we have it because he follows my lead, it is not perfect but I think it helps to be very detailed on exactly what hurts and guide your partner with honesty. A year ago I was in your exact position, I couldn't even think about sex without cringing, I take elmiron now and watch my diet to avoid trigger foods. I am not trying to gloat because I feel better than you , I am only trying to give you hope like others here gave me when I was diagnosed. I still have days that i call
" not a chance days" but I tell him up front if I see he is moving in that direction. We have found some creative ways to get around IC and not all of them include sex, My best advice is to love yourself and listen to your body if you just can't bear to think about it , then don't, and don't be afraid to say what you are feeling, that way there are no mixed signals or confusion. I hope this helps. Best of luck and God bless you