Hi Claire!
 
My heart literally ached to read your post... I know the guilt/fear associated with the way this condition/treatment affects one's romantic life, and although my husband has not sat me down for any such "talk," I have often wondered if he feels "trapped" in our relationship (I was in what I now realize was simply a 2-year remission during our dating/engagement relationship, and then the symptoms came back in full force soon after we were married... I felt like I had somehow "tricked" him into marrying someone he thought was healthy and "normal" - even though I'd totally forgotten about my first bout of IC and never thought it would come back!).
 
I'm not even sure what to give for advice except to say that you seem to have a good overall viewpoint (the logical part):  your boyfriend is human and - like all of us - want to have as "normal" of a life as possible with our partners, BUT you are the one having to deal with this condition and (understandably!) don't want to sabotage all of your hard work by breaking too many rules while in treatment.  The trouble comes when there are hearts involved, because if you love someone, you will hurt if/when they hurt/leave you. I would say do not be afraid to tell him how much you want this to work and how much you care about him, but at the same time, do not change your protocol for his sake. Do not let him pressure you (even "unintentionally") into compromising where you're not comfortable, and do not sacrafice your own health (physical, emotional, or psycological) just to make him stay. Tell him you understand if he can't live with that, but that you just can't rush this treatment. NO ONE should have to live with IC or the fear of IC, and the thing we need most during treatment is encouragement, support, and love from those around us. Please take care of yourself and trust your gut. I know sometimes it's hard to hear, but you are strong just for going through this (sometimes I want to say, "but I don't WANT to have to be strong anymore!!"... lol), and I know you will make it through no matter what happens.
 
Hope this was even the least bit helpful... I just couldn't not respond because my heart goes out to anyone suffering with IC - let along suffering the effects it has on relationships!! hugs!!
 
Sarah 

Gosh, Claire, I am absolutely feeling the same way and could have been me writing this post. I am so sorry you are dealing with this as well. My husband however, is not ok with my treatment and not supportive an anyway revolving my illness. It is so hard to have check this at the door as I enter work everyday and check it at the door when I get home. Very stressful, I do my screaming and crying in the shower or in my car as I drive to and from work. Like Sarah said, I almost feel like I tricked my husband into marrying someone that has been sick since childhood, I had dealt with many GI issues and such growing up but it wasn't until a month before our wedding when I really started getting terribly sick and continued to hide it for nearly another 3 years before I really thought death was knocking at the door, which is probably more true than I really care to imagine. 
It is so unfair we have to deal with being sick ontop of the stress that comes along with it as it truly affects every aspect of our lives and it's hard for others to understand the fear that comes with possibly trying something that pushes us over the edge whether it be food, exercise or sex. 
My husband tells me I am not trying hard enough. That I too need to try new foods or just eat what's available or need to be more physically active. I have a very physical job and by the time I get home I struggle to find the energy to do more and when I do it usually back fires and have to spend the rest of the night in a hot bath to soothe the inflammation.
It is difficult to know what to do when the love is still there, and you both still want each other in their lives, but just can't see past this part of the unknown when we will be better and back to a more normal life. 
 
Anyway, just rambling on I think, but I totally understand and have been wanting to post about it, but afraid I was the only one in this predicament. I hope you guys can work it out, but sometimes the stress doesn't seem worth it. 

Claire, I can relate completely to what you are feeling and experiencing. My boyfriend and I are also at a point where we are deciding whether or not to stay together, and while it's not entirely due to my having IC, that is a huge part of it. The lack of intimacy, the lack of options when going out, the days when I've been in too much pain to get out of bed .. its just all caught up to us and it feels like nothing is fun or easy in the relatonship anymore. It's a tough situation - we expect our partners to be completely supportive and stand by us no matter what (and we do deserve that!) but I've often thought to myself, if the roles were reveresed I probably would not have stuck around for him. I love him, but I know I'd have to love someone very, very deeply to stick around through what I've been through. I think a part of me has held onto my relationship because, like you say, it's so hard to deal with any more loss due to this illness and such a sad thing to admit that a relationship has ended because of it. I also find it hard to determine how much of my feelings toward the relationship are due to my illness versus the relationship itself. For example, I don't feel IN love anymore, and I don't know how much of that is due to the lack of intimacy and not being able to go out and do fun things together and how much is to do with him. Honestly, I think the lack of sex has been harder for me than it has for him ... I don't know how to feel connected to him anymore. That said, I think if there's a really strong emotional connection in a relationship, that feeling of connectedness should still be able to be there. Ugh I'm rambling. Just wanted to tell you you're not alone and I understand how difficult this is. You have to do what you believe is best for yourself, and if you are feeling a lot of added pressure from him to get well and do more or stress that he doesn't really want to be there, then maybe taking some time apart is best. I don't believe things ever have to be final ... it doesn't mean you two couldn't get back together later on when things are a bit easier.

Well, IC is TOUGH as is any major stress and life is unfortunately full of them. Before IC, my husband I dealt with infertility and also a period where I was injured and could not work or pursue any of my normal hobbies and those times were really tough but nothing compares to IC. Katie- that bliss you talk about is truly gone forever and yet, it was bound to go for some reason just not as dramatically as with IC. I know exactly what you mean!!
 
I have a great, strong 24 year long relationship here and we have struggled with this too. BUt I will say that although it is hard, I feel that I could never do this without him. I would never tell someone to end a relationship and I feel so much for those of you struggling with this because the truth is it would be better if the IC was gone but that is only one stressor in a life of stress. I don't want to sound morbib but life keeps getting harder in many ways. People die, finances get tight, Having children is a HUGE stress while it is also a joy, it puts a lot of pressure on the couple. I could never get through these times without my husband. We have had bad, sad arguments mostly due to my extreme grief but I always feel like "Thank God I have him" I don't know how I could function without him rooting for me. 
 
Those of us whose sex lives have been impacted by IC should not underestimate how tough that is. In a serious adult relationship, sex is more than fun and its loss is really hard. I am doing better with sex and I am so glad because i honestly felt like I had lost a HUGE part of my identity. I've been having sex with this man for 23 years (don't tell my mom!LOL) It doesn't just go away like "Oh well That was fun while it lasted"  My husband never said a word about it  (other than he worries I will get worse )and it will be his fault and still always leaves me notes like "have a good day ,sexy legs" and that helps me to feel like I exist as more than a survivor. It is me who suffers more with this because i just want what I want darn it! 
 
I have needed to allow myself and my husband to grieve and deal with stress in our own way and that is tough. This is going to sound crazy but the book "Men are from Mars, Women are from Venus" is embarrasingly right in many ways and John Gray has another book about how we handle stress differently that has really helped me. Some of it makes me cringe and yet i think he is spot on. That being said, Rob and I had a huge argument last night. Life is tough when you don't feel well but I know my life is less tough together with my husband, don't know if i'd stick it out if he made things even harder.
 
Love, prayers, peace, healing and strength to all of you. You are strong, amazing, brave, disciplined women
ps- sorry for saying tough so many times- i am in a rush!!!
 
 
 

Claire I hear your struggle. I met my boyfriend two months before IC hit. We have been together almost two years. I have to tell you the things that have been tough have been SEX and FOOD/DRINK. Sex for him, like it does for many men, feels connective. Men tend to connect through sex. So he has felt deprived of connection. I watch him eating ice cream and drinking cappucino and I feel deprived of pleasure. So there has had to be a willingness on both sides to take a look at whether we are making the other person responsible for that feeling. We have a lot of TALKS. Long talks. We have therapists and support groups.
I think one of the biggest lessons for me has been listening to myself. In order to learn how to do this, I have had to say no to requests from friends and family. I have had to put myself first, which has not previously been my pattern. I think if my partner could not deal with my process of having to learn to put myself first, as strange as some of that may look, I couldn't be his partner. The thing that is keeping us together is that he is willing to tolerate this bizarre process as long as I am willing to stay open, hear his feelings, let him have them-even the anger- and accept that he hurts too. We can only continue to come together from that place of acceptance of the MESSY. It truly does take unconditional love from both people- or at least it has taken that for us.
Much love to you, and healing, sister.

CP, I am so sorry it has come to this, but you WILL perservere. You will show yourself how strong you are. That you do not need love or approval from others. You are good enough for just who you are. This is so hard but you WILL come through it. I agree with Deirdre, don't fight the feelings, just be with them and they will pass. We are here for you.
xo
Mimi