married to IC

[understanding]

I guess I'm one of those jerks out there that doesn't understand but just to give some input from being married to this .I love sex all of it but its really hard to understand when I read the info on here ,I realize its hell to live with this too, but its not easy being married to it every time the wife and I try its always real fast and most of the advise you give is the oppsite of what we do she gets a bath afterwards ,no cream or nothing as soon as we start its hurting no foreplay ,no oral never on me I get to about twice a year,never get to touch, and very little kissing so whats suppose to keep a man going
really I know most of you already hate me but she wanted me to understand and get on here and read more but effort goes a long way with me she is going to the doctor and taking med's and has had the bladder treatments
I guess what I'm wondering is how and the hell do you stay close . I make sex to big of a part of my relationship to much but it sucks when your partner hates it we've been married for over 20 years I do love her but really miss this part of my life mine still works with nothing to do with it really do want to understand I've been to the doctor with her but yeah I'm a man and may not show as much support as I should but well just thought I'd let your here from the other side of this terrible thing

[kadi]

Of course you miss what you had. Who wouldn't? But, if you had prostate cancer, heart disease, or debilitating back pain that did not allow you to have sex as you used to, how would you feel about your wife complaining about it? Especially, how would you feel if your wife came online to complain to the only people who understand you?

Marriage means "for better" or "for worse". My mother has IC, as do I, and watching my dad support her through it, does give me hope for relationships. And there are many difficult things people go through in marriages. I watched my sister in law handle my brother's deployment to Iraq while she went through a high risk pregnancy, my best friend handle her husband's depression & unemployment, another friend loved & supported his wife through her severe anorexia. Marriage means you love the person so much that you support them when things are hard and hopefully you know that they will do the same for you someday.

No, it's not easy being married to IC, but frankly, it's far worse having IC.
I think you missed the point of why your wife wanted you to come onto these message boards. If you realize you are being a jerk, what are you going to do about it? Where can you get the support you need? Maybe a counselor or pastor can help. But, just being frustrated and lashing out will not improve the situation or your marriage.

[traceann]

Hey there and welcome to ICN! I think it's a lot of credit to you that you are even here trying to help your wife and yourself deal with the IC. There are a lot of husbands out there that won't even hear anything about it - at all. So, don't count yourself out just yet ;)

There are a lot of ICers that get to the point where they are afraid of anything - touching etc. Some have pain just from arousal, some from just sex itself etc. It's different for all of us, and most of the suggestions listed are a compliation from lots of us. What might work for one, won't work for another etc.

The fear then becomes part of the cycle - that can cause muscles to tense up and create pain etc etc etc. I would say you two should sit down at a quiet time, and have a good heart to heart on it. It's a difficult subject for lots of people to talk about, but unfortunately with IC you have to get past the embarrassment and let each other know what's on your minds etc. Usually it's something most people just do - not talk about it. But, you might ba amazed at how far a good chat can go - no pressure, no expectations - just a safe atmosphere where you both can say what you feel.

There is a new site specifically dealing with how couples can stay intimately close, deal with painful sex - suggestions, ideas and whatnot to get around the usual troubles a chronic illness, injury etc can bring to a couple's sex life. It's "When Sex Hurts" here's the link: http://www.whensexhurts.com/forum/

Hope this helps a little bit, and don't be shy - either one of you, this is a great place for information, support and ideas for dealing with all aspects of IC!!

[Roxie2007]

HI! I feel very fortunate to have a very supportive husband. There's MANY times when I am in the mood mentally and emotionally, but physically I know if we have sex, that day, I will be in major pain for days. I work full time and it's very difficult to work and hurt. It can drive you crazy!
I think counseling for both you and your wife might be in order. It's hard to be married to someone with IC and hard to have IC and deal with on a daily basis. I think being able to discuss these problems with a professional may be very benificial to both of you. I wish you both luck and hope you can work through this since it's a life time situation. Roxie

[ICNDonna]

I absolutely agree that you need to talk with a professional.

Donna

[Sarojini]

IC is difficult to live with -- for both partners. I am not sure how long ago your wife was diagnosed with IC, or how long her symptoms have been going on, but realize it is normal to go through the phases of grieving when a chronic illness appears in your life. You both are essentially mourning the loss of the life you used to have. Realize too that anger is one of the phases of grieving, and you seem to be in that phase.

For both of your sakes, I also think you should talk with a professional, either alone or with your wife. You don't want to get stuck in the "anger phase" because it will lead to resentment (in fact, it sounds like it already is getting there for you) and many more problems down the road.

You WILL get through this -- BUT you need to keep the lines of communication open between the two of you. Both of you need to resist "shutting down and shutting out."

I'm glad you are reaching out for help by posting here. That's a very positive first step!

[Annie2]

You are NOT married to IC. You are married to a WOMAN, the very same PERSON you married 20 years ago. You did not vow to love honor and cherish IC until death do you part. You promised that to the woman you took as your wife and she vowed the same to you. The woman you love and married happened to develop IC. It could very well have happened the other way around with you being the partner who developed a chronic and painful illness and your wife the healthy one. How would you want to be treated if that had happened? Your wife is not the enemy here and you are not her enemy. You both have a common enemy and it's not each other. The enemy is IC. Your wife needs to know you are on her team helping her in every way you can and you need to know she's on your team, too. It's definitely a two-way street.

Of course you miss intimacy. I'd be willing to bet your wife misses it just as much as you do. However, severe pain can make her fear any form of intimacy because any act of intimacy may lead to pain for her. Certainly you are not saying your desires are more important than your wife's need to avoid pain, are you?!!!!! No, I honestly don't think that's what you are saying. You just want her to recognize and acknowledge your desires and frustrations, right? Have you asked her to make a list of all the intimate acts (starting with just simply holding hands or gentle hugs) that do not cause her pain and another list of everything that does cause pain for her? Have you then offered to compromise by promising, if non-painful acts are attempted, you absolutely will not push her to do those things which might cause her pain? The visceral pain of IC is a tremendous motivator. Sometimes we back away from things that are pleasurable and don't cause pain because we are so afraid it will lead to things that will be very painful.

You both have needs and desires. Right now, though, you must concentrate on the basic NEEDS that absolutely must be met and your DESIRES must be put on the back burner for as long as it takes to find the right help and treatments to get your wife back to feeling better. There are lots of treatments and meds out there and so much that can be tried that just might bring relief. More than ever before, you must be a TEAM united in your efforts to fight the common enemy that is making you both suffer, IC. Can you honestly say you have researched and read about IC and understand it? Do you know about all of the medications and treatments that are currently available and can be tried by IC patients? Is your wife's doctor up-to-date in his knowledge of IC and available treatments or is there another doctor in your area who might be more knowledgeable and able to provide better care for your wife? If it were you suffering, wouldn't you want you partner to research and learn about your disease and do all she could to help you get the best medical care available to you? Your goal is finding the best treatment available for your wife. That must be the #1 goal for BOTH of you.

It's not easy for any of us. Many people need professional help to guide them through this process and show them the way to do it while, at the same time, preserving their marriage. As the others suggested, I hope you will immediately seek the help of a professional experienced in working with couples dealing with the serious problems caused by the development of chronic illness. By posting here you have taken one step in reaching out for help. I hope you will now take the next step and reach out for the professional help you both need and deserve.

[sweetangel2080]

hi understanding and welcome

maybe you could try and use what you've read on here before about advice on intimacy and discuss it and try it out?
maybe telling her how you feel may help so that you can talk about it and it seems like u are willing to compromise with activities etc.
there is a sticky on this thread about tips - maybe you could try those out - or pyridium for your wife or lidocaine anaesthetic? (you would need protection so it didn't numb you) or other such things?
could be experimental and take a while to find what is ok for you and her but i'm sure you will get there and good on you for coming on here and asking for advice

I think this is a touchy topic due to the fact that IC can affect intimacy a lot and have an adverse affect on the patient but it's equally tough on the partner due to the guilt feelings and then frustrations. But the patient feels the same so it would be good to discuss this.

[Concerned Hubby]

Hi understanding,

As a husband who's wife has IC I thought I would share my thoughts with you. I am recently married (6 months March 2007!) and my wife has a moderate-severe case of IC. I knew before we got married that she had this condition. To me it didn't matter. Being intimate is certainly a part of marriage but really it is a small one overall. It is hard to watch my wife hurt and it is difficult for both of us when we are both in the mood but know that it just isn't possible for us to be romantic. As corny as it may sound those are the times when you just enjoy a good snuggle on the couch. It is hardest on me when I see that she really wants to be together but just can't. For my part I make sure she stays on her meds and watch what she eats (chocolate is a big one for her). Sometimes she gives me a look that says "who are you to tell me what to eat and what not to eat" but she knows I am doing it for her. It is a partnership and together we do the best we can to help prevent flairs. Then there are those times when she flairs, runs to the restroom and doesn't come back. Those are the times I fill the tub with warm water and hold her hand as she soaks. It isn't easy. On her physically or me emotionally. Flairs happen in a flash. And as much as I might miss her physically it still means a lot to be able to comfort her as best as I can.

[aprilmae]

Concerned Husband,

Thank you so much for posting your very compassionate view of your wife's illness. My boyfriend is very much like you are when it come to me feeling bad. It truly makes all the difference in the world when your partner is supportive and does whatever they can to make you feel better - even when it is just holding hands or snuggling. Your wife is a very lucky woman.

April

[Concerned Hubby]

Thank you April,

It is hard. I should also mention that I have found it extremly beneficial to go to ALL of my wifes dr appointments. We are both able to ask questions about meds and treatments. I am an avid reader and since being married have made sure to read up as much as possible on the topic of IC. We live in the NJ area and will soon be moving to MD where I hear that Johns Hopkins and NIH are both running studies. My wife hopes to join some of them so that we can maybe help find a cure for this.

[traceann]

I just had to add ditto to what aprilmae said! It's so nice to hear a hubby taking and interest and approaching it as a team sport - like it should be! Welcome to the gang!!! :)

[Bessie]

Thanks for being such an angel to your wife :angel:
I know how much it means to her to have your love, help, and support. It makes this illness easier to deal with when the one you love is beside you every step of the way. I always feel that way with my husband.....no matter what happens, he has my back :) You can't ask for a better blessing!!

[Concerned Hubby]

Thank you traceann and octoberfarm! It is hard but what else can be expected of me? I love her very much and only want to help her. When she hurts I hurt to. We are Orthodox Jews and as such we have certain restrictions on when we can and can not have contact. Maybe that helps us with the IC as well. We have had to learn to use words and facial expressions to convery intimate expression. I greatly admire all of you (especially my fantastic wife)that have to bear the side effects of this disease day in and day out.

[babykahuna1]

I HAVE TO SAY POOR LADY. WE ALL NEED SUPPORT FROM OUR HUSBANDS. I MUST SAY I AM VERY LUCKY TO HAVE THE HUSBAND I HAVE. HE'S ALWAYS THERE FOR ME AND HE UNDERSTANDS THAT WE CAN'T ALWAYS HAVE SEX. WHEN I'M IN ALOT OF PAIN HE'LL GET MY HEATING PAD FOR ME AND LAY NEXT TO ME AND HOLD ME. PLEASE TRY TO UNDERSTAND WHAT YOUR WIFE IS GOING THROUGH.

:pray:

[traceann]

You are most welcome concerned!! ;) That was always my feelings too, if it were my husband, what other choice is there but to stand by him and be his partner? To me there is no other option, he's my husband - in sickness and in health, not "in health, but I am bolting if there's sickness!" :)

I also firmly believe that dealing with these sorts of things can strengthen the bond even further, especially if you are working as a team - like octoberfarm said - having each other's backs! Keep up the great work, hee hee!!! ;)

[Babs RN]

First of all, Concerned Hubby--you sound like a wonderful partner and blessing! It gives me hope that there are more guys like you in the world. Now to understanding...I won't go into gory details, but after providing my spouse with the acts he enjoyed that caused me days of post coital pain, or acts that satisfied him, he still chose to leave the marriage. His attitude reflected alot of your comments on your post. He knew I had chronic health issues before we were married, in fact we were together 3 years before marrying. He attended few of my appointments. I guess my point is this...please seek help either as a couple or individuals. Having a chronic health issue is hard on the entire family unit. However being told you are letting the other spouse down in some respect adds extra stress to the one with the illness and it in turn becomes a horrible cycle. I also wanted to echo Annie's sentiment that you are not married to IC, you are married to a woman, a human being who unfortunately has IC. Whether or not you choose to define your relationship by the disease is your own.

Just had to share my 2 cents.

Barb:smile tee