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  • Can anyone relate?

    I am going through a difficult time with my boyfriend right now. We have been together for 3 1/2 years. I was diagnosed with IC a couple of years ago. Then, last summer I was diagnosed with vulvodynia and pelvic floor disorder. This past year has really taken it's toll on our sex life. We have maybe had sex once a month if we're lucky. Unfortunately, it has rarely been the kind of sex that brings you closer to each other. More times than not, it brought about feelings of frustration ( I was in pain from pfd, he was trying to move how I asked him to, etc). To give you a short history on our relationship, it is a healthy one in which we share a lot of love. However, lately it has just seemed like we're friends. That deep connection rarely seems to be there anymore. I love being around him, but I long for that romantic bond and intimacy. I am just wondering if us not having sex for so long could have caused this feeling of disconnection? Has anyone else experienced this? All of this is making me question if he's the one for me. If he's not then fine, we'll move on. But, I don't want to give up if we can work through this and re-establish our close bond. Please share your thoughts. Thanks!
    La Mariposa

  • #2

    It is so hard when our health seems to take things away, isn't it??

    I certainly do think that your "disconnection" may be a product of the IC/PFD/vulvodynia pain. You aren't alone there -- I know that I personally have had this same sense in my own relationship with my husband of four years. Lack of sex can be hard on a relationship, because you are right, one means to closeness and emotional connection (and oh, all that PASSION ) is not there anymore.

    However, please note that I said ONE means to closeness, not THE means to closeness. In a sense, having these diseases can be a gift in some ways, because while it may take away your ability to have intercourse sometimes, it forces you to find other ways of developing closeness and passion! Of course, I do mean trying other things in the bedroom, but I also mean things outside of it. Sometimes trying a new, exciting activity together can be a great way to bond, for example. Even doing an old activity, like watching a movie together, can be made into a new experience... watch cuddled up together and fondle each other like teenagers, or take a laptop or portable DVD player, find a pretty place to "park" at night, and voila, instant drive-in movie

    There are thousands of other things you can do in bed and out with a little creativity. Don't let your sadness over losing a portion of your sex life paralyze you -- then nothing will change, and everything will always seem disconnected and sad. Instead, try to focus on what you CAN do

    I also detect a little guilt in your "voice" for being "bossy" during sex (telling him how to move, etc). Sometimes, we all need to do that. We need to speak up for our needs in bed and out! By telling him how you need him to be, you are taking charge of your sexuality.... don't feel bad about that. Just do it in a loving, caring way. And, if you are really worried about it, you can talk to him when you are out of bed -- ask him if you were too bossy, because you're worried you were. If he says that maybe it did bother him a little, then listen to how he'd rather be talked to in bed and do it that way. I am SURE he does not mind doing what you need, so I think you may find that if he is bothered by anything, it might be the way you said it... but sometimes men can be pretty oblivious during sex too

    Have you spoken to your boyfriend about this? Is he feeling the same disconnected feeling, or is it just something you feel? Sitting down and talking together would be a good step. Let him know how you feel, and say you want to keep the relationship. Have a long heart to heart. You will feel so much better after.

    You say that your relationship is loving, but you simply don't have that spark now... it certainly seems fixable then. I don't think this is worth breaking up over After all, I've been married four years... sometimes the flame dwindles down to just a small burning ember, but then something comes along and fans it, and bang! We got our groove back

    Check out our Romance and Sex boards for more ideas. If you haven't already, check out the tips in the "Jen's Sex Tips" thread ( -- it's a post I made to give some pointers on what I found made sex more comfortable when a partner has IC. Check out the entire thread because many many people with IC and PFD have added their own advice to the tips I posted.

    You can also head over to our sister board, called When Sex Hurts -- There's a lively, and even more frank, discussion of IC sex there.

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3

      I am sorry you are going through this. I am sure everyone here has at some point and time had trouble in their relationship because of IC. You are absolutely not alone. I have been with my husband for 9 years and we don't feel as intimate as we use to because we can't do the "do" as much as either of us would like. What has helped us is being intimate in other ways. Sex doesn't have to be all about penetration; there are other things you can try. I will leave that up to your imagination and desires. Remember too that all couples sometimes feel disconnected and then reconnect... even without IC in the picture. Its just a natural part of any long relationship. Also, if it has gotten to the point that you fear sex because of the pain which just makes it worse; you may want to talk to a sex therapist to help you with some of these fears.
      Good Luck.
      I am a soul whose intentions are good.
      Oh Lord please don't let me be misunderstood.


      • #4
        Jen and Jenelle,

        Thank you so much for the insightful replies. I have talked to my boyfriend about some of my feelings about not feeling as close and that the lack of physical intimacy bothers me. He has been a sweetheart the past year and rarely initiated because of my medical stuff. He sees this as a dry spell and something that will resolve when I begin feeling better. I guess what I need for us to do is to communicate a lot about other ways to practice intimacy and to begin them now. I think a sex therapist may be helpful for a couple of reasons. Janelle, you mentioned I could be associating sex with pain, which would be making it worse. I totally do that. I think I need some help getting out of that pattern. Also, we have had real difficulty communicating openly about this issue. I'm thinking maybe a few sessions with a sex therapist could open up that discussion between us? Finally, it really struck me what you both said about the natural ebb and flow of a long term relationship. Sometimes you feel close and other times that fades, but hopefully that fire gets re-ignited by something. I guess my problem is whenever that closeness disappears, I really question whether he is "the one" for me. (To give you a little background: I've always been afraid to get married. I'm fearful of being "trapped" in a relationship in which we aren't close anymore. Throughout our relationship, I've never been for sure that he's the one I will marry.) So when times like this come up in our relationship, I'm unsure if we're just going through a difficult time or if we're not "meant to be." I know the question of him being "the one" is one only I can answer. I'm just having a difficult time distinguishing if this is a normal part of a relationship or if this means we aren't right for each other? Thank you ladies again for your support ; )
        La Mariposa


        • #5
          I think one of the biggest things in a relationship is communication.. I was a newlywed when I was dg with IC, so I completly understand how you feel..I had the same doubts about not being able to have sex as much as I would have liked to, but at the time is was so painful. My husband is a sweetheart he has been so patient and understanding..

          But I would like to share with you that there is soooo many was to make love with your honey, It does not have to require intercourse..If you would like you should look at our other site
          There is alot of helpful information about painful sex and how you can make love without intercourse.. We would love to have you join us..
          I hope you can get some answers it sounds like you really do have a supporting boyfriend..Good luck hun and God bless both of you

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

          Link to Patient Handbook:

          Diet Reference Sheet:

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


          • #6
            Hello Butterfly ...

            Hubby and I have been married 26+ years and let me tell you, sex is always changing. Not only because of the IC (I was dx in August 01) but because of other changes, both mine and his. We do not have deep penetrating intercourse very often because it hurts me. But we do have a very satisfying intimate life. We are always looking for new ways to be close to each ways to pleasure each other.

            Please check out You will find a lot of suggestions from those of us who must think about sex differently. There are also some good sites that Jill and others have provided that can bring about some very interesting conversations. We have a lot of fun and it is like chatting with girlfriends.

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.

            Link to the ICN Patient Handbook:

            Link to the IC Diet:

            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


            • #7
              I was thinking about talking with a sex therapist myself I just haven't been able to find the time. It definitely can't hurt and if you dont want to go any more there is no committment. If you have primary insurance, most insurances cover mental health therapists including sex therapists so hopefully it will cost you very little out of pocket.
              Good Luck!
              I am a soul whose intentions are good.
              Oh Lord please don't let me be misunderstood.


              • #8
                Thank you everyone for your ideas. It is so important for me to know I am not alone in these challenges. ; ) I will keep you posted (and may ask for some more help along the way!) on how my boyfriend and I are able to communicate (and hopefully reconnect) through this time!
                La Mariposa