Dazed and confused

[Esses]

I am new to the IC experience. I am the partner of a wonderful woman diagnosed about 4 months ago. Nothing has helped her yet. We were engaged a few months ago. I am crazy about this woman and have done everything I can to support her in every way I can think of through this ordeal. I know that with the constant pain, she can't even think about sexual relations for the forseeable future. This does not change the way I feel about her. What I don't understand is why she is not interested in other forms of intimacy and/or displays of affection to make up for this deficit in our relationship. What overall effect does the bladder and pelvic pain have on your emotions relative to your partners? When I broached this subject it caused a week-long flareup. I don't want to put her through that again!! Dazed and confused.

[ICNDonna]

The fact that you're here tells me that you care very much for her.

I think what might be happening is that any gesture that suggests intimacy may be frightening because of the fear of pain if it goes on. You might try something like just asking her if you can hold her --- and don't try for anything beyond that right now.

Most people with IC are able to have sex, but it can take a great deal of experimenting and open communication. Since your loved one is fairly newly diagnosed, she may not have found effective treatments yet. Is she on an IC diet? That can be extremely important.

There's a book, titled, "The Interstitial Cystitis Survival Guide," by Dr. Robert Moldwin, that I recommend to all IC patients. I've had diagnosed IC since 1975 and I refer frequently to that book.

Sending warm hugs (It's nice to see you are supportive. We all need that),
Donna

[vm]

Hi, Esses. Here are links to articles written by the spouse of someone with IC:

http://www.ic-network.com/iclifestyles/sept03.html

http://www.ic-network.com/iclifestyles/august02.html

hope they are helpful. :)

[dyno]

Another aspect of what could be going on is her medication. If she is on certain medications, they can affect sexual libido. So just hang in there and through good communication as has been mentioned before, hopefully you can find out what is bothering her and work through it.

[ese]

Does she have bladder spasms? When I'm flaring, even simple things such as rubbing my shoulder or hand causes the spasms to intensify, often making them nearly unbearable. The other reason is kinda like Donna said - she may not want any intimacy for fear that you'll want more. Speaking as someone who loves her husband very much, I can tell you that it is probably extremely stressful for her to say no all of the time. Hang in there! There will be good days ahead!
Also, you might wany to try becoming intimate in a warm bath. Warm (close to hot) tends to help my spasms and pain (sometimes I wish I could live in a Jacuzzi! :) ).

Ese

[mayray518]

I think it is wonderful that you posted. A lot of men dont want to hear about the IC issue and just bolt. You have to be patient and realize that this disease is chronic and a horrendous jolt to those who get diagnosed. She should be able to find something to help her and get back to normal but it is a difficult process. The fact that you are supportive is something to be thankful for.

[Esses]

Thanks for your responses. Its just that its really difficult to tell if her reactions (or lack of response) is due to IC and the self-focus resulting from experiencing chronic pain and dealing with the shock of having such a debilitating condition, or a lack of interest in me and this relationship. Its been 4 months since the diagnosis and at least 6 or 7 months since virtually all attention has been on her symptoms. At this point I'm really not sure any more what's important to her.

[mayray518]

From the point of view of a woman with IC I dont think it's that she has lost interest in you. IC can be so debilitating and depressing that you want nothing but to lie in bed. Believe me, I could have had Mel Gibson interested in me and I would have cared less when the IC was bad (ha). I think it is wonderful that you are interested in learning how you can help her. I wish I would have had that support when I was at my worst.

[dancemomof2]

Sounds like you are a great person for the support you are giving her. I went throught he same issues myself for awhile, In my mind I had decided all intimacy was going to lead to sex which would lead to pain and misery. I shut out hubby fast and hard, i got to the poin that even a snuggle on the couch was going to lead to way more then I wanted so I would run to the recliner because I knew I would be able to sit alone and not be touched. It is really a big mind game as well as physical issue. take care.

[Lex]

When I first started having symptoms no one knew what was going on with me and I was put on a million different antibiotics over and over again (I wasn't diagnosed until over 2 years later). I was in pain a lot, confused, scared and depressed. I pushed by b/f at the time away (we are now engaged), partially because even him rubbing my back or shifting the bed next to me caused the pain to get worse, but also partially cause I didn't want him to see me in such a horrible and pathetic state. I fell into self-pity a lot and wasn't able to really think about what HE needed.

I am only 21 and my sex-drive is alive and well, but when I am not feeling well I can't even snuggle up with him because it is as much infuriating to me as it is for him that it cannot progress any further. I don't want to have to push back those feelings for him, say no, see him disappointed, feel guilty, so it's easier not to initiate it at all.

We've since had a few major discussions about IC, our sex life and our future together since it became apparent this was going to be with me for a while. It is absolutely imperative that you two can talk about what is going on. It might be a little while before she is able to really talk to you about it, so you have to be patient. I seriously doubt that she has lost interest in your relationship, and she probably feels horrible that you may be thinking that. Give her time to sort out her feelings, and let her know that when she is ready you will listen and you will help.

One word of advice though: don't try to talk about anything serious while she is in a full-blown flare. When I'm in that much pain its hard to think clearly and its just like.. "You wanna talk about WHAT right NOW?" lol

[Myli]

I think everyone has given you some perspectives on how the IC patient feels and it's influence on how they are perceived. Only talking things out will help the two of you understand how the other is feeling.

When she isn't in so much pain that she can't think of anything outside of it, would be a good time to see if she is open to talking about all the issues, including sex. Sex may also have to get creative. There is more to sex than just the genitals, there are other pleasure centers as well. It is well worth the time to explore them. Sometimes, we have to let go of our preconceived notions of what is sexually appropriate behavior and what is not. We may also need to recognize that sometimes it is wonderful to satisfy our partner, even if we can't enjoy the physical sexual activity ourselves at that moment. Watching our partner receive enjoyment and fulfillment can be very sensual for the giver. Now, if it is all give and no receiving, that can be a problem. Many do, however, find ways to do both, despite the IC complications.

With enough love and caring, you two will handle this and it will draw you closer together.

:grouphug:
Myli

[Esses]

Thank you all for such thoughtful and intimate responses. I really do appreciate your candor. I believe I have a better grasp of what's going on, frustrating though it may be. Good luck to all and Happy Thanksgiving!

[Julie B]

You asked a couple of questions, and you received marvelous answers. I also believe that there is a post-traumatic stress reaction going on with some IC patients and any form of intimacy. As a wise doctor explained, pain serves two purposes. One, it lets you know you are in danger, and you had better change what you are doing; after bumping your hand on a hot stove, you recoil. Two, pain teaches you a lesson; you are much more careful around a stove from that point on. You may even feel some anxiety about stoves for a long time if the pain was bad enough.

The other thing you may consider is that both of you are involved in a grief process. This is a nasty thing to be thrust upon you before you begin a life together. From interviews with the dying, Dr. Kübler-Ross identified five stages that many people go through -- denial, anger, bargaining, depression, and acceptance. Those stages can apply to IC patients and their family members as well.

ICN is a good place for IC people and their families. Being sick can become a lonely thing, but knowing others out there have the same problem certainly helps a person get through the stages of grief.

She is lucky to have you. Please encourage her to post here as well.

[Member has resigned]

I feel for you, I too WAS engaged to a wonderful loving person who was diagosed with IC after our commitment to each other. I was totally devoted. But I neglected other things for many reasons taking care of her was a part time job and compensating for inability to functional in a household was another part time job. I missed the intimacy totally, i would have settled for a passionate kiss with soft words I want you soon. But between the pain meds and constant pain she was a changed woman and WE both had a hard time coping. On top of it I bungled somethings (which are not necessary to discuss her I just felt obligated to mention I know what I did are they forgivable YES, but none the less I need to take responsibility for it)

Be patient, understanding, let her know you will wait, BE CAREFUL OF THE PAIN MEDS THEY AFFECT YOU PHYSICALLY AND MENTALLY and she will not be the same person for a while. IF you love her you will make yourself devoted to her BUT do not make my mistake and devote yourself totally to her and lose yourself, It will make you angry. Being a caregiver is heartbreaking and emotionally draining because you WANT to fix it for her and you will become frustrated angry at yourself because you think you failed her. ITS A GUY THING, you probably cant change it but recognize it before your become angry and resentful.

Hold her close, love her, let her know you want her, that you are still attracted to her and communicate with her. Avoid resentment and anger. IT will ruin your relationship.

I realized this all too late, it was making me less patient, more restrictive, since I could not control her disease I tried to control other aspects in order to compensate and I was getting resentful and afraid. The pain meds and other medications made her a different person than the one I FELL MADLY IN LOVE WITH and will hopefully god willing we can start our relationship over if she ever talks to me again.

As you can see I am writing this just as much as for me as for you. GOOD LUCK, I feel so much for the both of you. LOVE EACH OTHER, DONT FORGET WHY YOU FELL IN LOVE WITH HER AND HOLD ON TO THAT TO GET YOU THROUGH IT.

Please feel free to email me if you need to talk GOOD LUCK

[Esses]

That's really at the heart of my confusion and frustration these days. Its been 5 months now. If she only knew how far a few minor displays of affection would go right now, it wouldn't be quite so difficult. I understand the limitations on what can and can't happen between us at this point, I just wish she would occasionally show some sign that she's still interested in me. How are we supposed to know???

[Member has resigned]

I know how you feel god do I know. I love her so much and was totally devoted to her. I went from Lover and best friend to nurse and caretaker, chef and chauffer. You might do well to read all my threads. It was hard. I would still do it in a second given the chance with a few minor changes as to how I handle the stress. DONT RESENT HER FOR THIS IT IS NOT HER FAULT.

Talk...talk ....talk...and then talk more. Let her know you will always be there for her, but you need to know she still finds you as desireable as you find her and let her know you find her desireable. Tell her this lots. Kiss her ear and whisper it and let her know when she thinks she is ready to be intimate your gonna make GENTLE AND CARING Love to her. It (although you probably want to) cant be real passionate, it has to slow and gentle and if need be and she shows any discomfort YOU NEED TO STOP (even if you havent well you know) Try and have her climax first so she remembers that great feeling of intimacy and love. (even if you have to relieve yourself later but dont let her know that yet) It may come a time when you will have to do this to avoid prostate problems (build can cause prostate problems for men over 30). But keep her self esteem up that is very important.

If she is under medication they tend to fall into depression...DONT LET YOURSELF GET DRAGGED INTO THAT WITH HER. It is very easy I DID!!! That is part of what happened to us....With all of the negative things in our lives she was then getting a little better and we had a fight and it was stupid fight and she said she was leaving me....so guess what she was feeling better, I was still depressed.

SO please keep yourself true. LOVE her like there is no tomorrow and dont let go dont let her give up. But dont sacrifice yourself either you wont help her then.. get counselling if you can. But remember there is a light it might take a while. Lots of people said do you really want that for the rest of your life and my answer was always "without a doubt Thats what it is all about" and isnt it?

Well like I said PM and we can talk if you want. Good luck and I will say a prayer for y'all

[mysocalledlife]

Hi
I am new here, I was just diagnosed two months ago with IC after two years of no one knowing what was wrong with me. I wish I had someone like you guys to be with me.

frustrated0823, You sound like a wonderful person. Yes you may have made your mistakes. BUT aside from cheating on her or beating her, I really have to say how lucky she is! She obviously is having a hard time, but she cant she find it your heart to know what you have done for her. You must never give in and think that way again. She is just having a hard time maybe you guys can work it. I think if you are writing sincerely here She should know that it is very stressful for both of you. It is not just about her.

Both of your fiancee's (or ex finacee I am sorry frustrated0823) Need to know how lucky they are. Best of luck to all of you.

[Member has resigned]

Thanks, I understand she is feeling very good. I am happy for her. I appreciate everyones kind words. She just came off of all her pain meds this week. I hope she does well.