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  • How do you tell a man you have IC?

    I've avoided dating for a long time and now figure if I don't try and risk the rejection over the sexual problems I have with I.C. then I will be alone forever. I even tried dating sites that said Asexual andtrust me, they don't advertise much on dating sites. So, its back to mainstream dating. I was never one to jump into bed with someone fast before I.C. but I don't feel I can use the "Im old fashion" line for too long... .So, this is how it goes in my mind --- I tell them.. and what I picture is them acting like they will "try"..... etc... then I picture them getting frustrated at some point... then in my mind.... they "dump" me. I know, I know, very negative thinking. I tried a mainstream dating site before and after a couple of conversations .. before even meeting them, told them about my "issue", and they simply disapeard. Any suggestions? I'm so tierd of doing everything myself and don't want to grow old alone.

  • #2
    no replies

    I hope that someone has some advice. It would be nice to hear what others have tried. thanks, cat

    Comment


    • #3
      Hi Cat, Sorry I don't have any advice for you, but at least wanted to give you a reply. I'm also single (newly and have been in the past with IC), and have found it very difficult to figure this out. The only thing I'm hoping for is that someone understanding will come along....if he is truly the man for you, he will love you and understand the limitations this disease can cause. Sorry, again, that I can't be of more help! There are alot of other single people on here, hopefully more will be along to reply. Not everyone is on all the time, so it may take some time for more responses.
      Thank You all so much to everyone here for all your sharing, caring and support!
      < My "Bear"
      CurrentTreatments:
      Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
      IC Diet
      Hydroxyzine 50 or 100mg at night (Is restarted)
      Zoloft 100mg 4/8/07 (Is restarted)
      Klonopin 1/2 mg 4 X Day (started 3/17/07)
      Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

      Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
      Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention


      My Myspace page - http://www.myspace.com/42620225

      Comment


      • #4
        I was young and single when I was diagnosed with IC. Actually, I was young and single when I developed IC. By the time I was diagnosed I was dating a wonderful man who is now my husband. We've now been together for almost 18 years. Since I didn't know I had IC when we started dating, we learned about IC together. Certainly wasn't easy and there were some rough spots, but we've gotten through.

        Unfortunately I don't have any great advice but wanted to let you know that there are patient, understanding men out there that will go the distance.

        Comment


        • #5
          I know just how you feel. I am single and I have been single for some time. I now feel that I would like to date again, but I am nervous about the blind date thing. How to you explain you don't drink alcohol? How to explain the frequent toilet breaks? How to explain you don't wan to walk to venues? It's very difficult. However, if you are trying internet dating, I would suggest you don't talk about your ic at all unless you are getting on with someone like they were your best friend. I wouldn't mention anything if I could until the last possible moment and after you have had a couple of dates. That way,they will have got to know you as a person. I hope you meet someone and I hope I do too as it is hard being alone!

          Comment


          • #6
            Hi Cat,

            I'm newly single and just started dating again. I never said anything at first. Sure I peed often, but he really didn't notice until one day when it was real frequent. He didn't say anything, but looked concerned, so I just matter of factly said I have to pee a lot.

            As for being out and about, I'd just mention that you're concerned about finding a bathroom, and I'm sure you'll be able to "go" when you need to. If he knows you need to pee often, he should be understanding, whatever the cause. As far as drinking, all you have to say is you don't drink.

            One day when we were just hanging out, and I had to go to the bathroom, when I came back I casually mentioned that I have IC, and in about 3 sentences told him what it is. He's actually the one who's brought it up several times, concerned that he may be hurting me or that I have to pee and am not saying anything.

            It's taken me many, many years to become comfortable with IC. I lived with it for a long time before getting diagnosed and was always embarrassed by it. It's not something a guy has to know on a first date, any more than he needs to know if you color your hair. And if he's worth anything, he will be understanding with your need to go to the bathroom as well as your need to take it easy some days.

            The more "easy" you are about your IC, the easier it will be for someone else to understand.

            Comment


            • #7
              I agree with the other posters. Trust me, I know it is hard to not tell them about your IC. I find myself biting my lip just to keep it in myself! Luckily I can get away with them not finding out so far, as my frequency isn't all that bad. Still, if I plan on going out on a date, I try to go on a non-liquid fast. Basically I limit fluid intake for the day. I know its an awful idea in the long run, but it works in a pinch.

              It might seem sneaky, but really think about it from their point of view. I know I've dated some guys that let a few peculiar things slip on the first date. I'm a very open minded person but hearing about mental disorders and unusual fetishes should generally be reserved until after you actually like the other person. Unfortunately IC is something that we can not in many cases get rid of, but it falls into this category of "do not say on first date" things.

              ~*miz_sunshine87*~
              19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Start of IC symptoms- Summer 2003 (after a UTI)
              Dx- February 2004, after hydrodistension (ouch!)

              Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

              Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

              Comment


              • #8
                Hey Cat,

                Thats a very good question..

                I think I would wait to say anything.. You should wait until you go out for a little while before you get to personal..Just go out on dates and test the water..

                But when you do come across someone you like and they seem interseted, then I would mention about having IC..If they run, then that was not the right person for you in the first place..

                There are a lot of wonderful men out there and I am sure you will meet someone who understands you and what you have to deal with on an every day basis..Just always remember if something is meant to be it will be.. ..Good luck!

                ps. I met my hubby online!
                Hugs
                Ronda

                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:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                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.

                Comment


                • #9
                  One step further...

                  How do you broach the sex difficulties with I.C. Do you wait until when it "seems" like it might happen? Or.. do you bring it up before it even gets to that point.
                  thanks.

                  Comment


                  • #10
                    Hi Cat,

                    As far as sex difficulties, I guess a lot depends on what kind of difficulty you have. I don't have usually have pain with sex, but I do have extreme urgency. The only time it actually hurts is when my bladder is "bumped".

                    I didn't say anything before we did anything.....I just let things happen. Later, when we talked, I told him sometimes I feel like I have to pee real bad during sex, and he was fine with it. He's the one that asked me if anything hurt.

                    As with disclosing the IC too soon, I felt like if I said anything about sex before anything happened, he might get scared. Scared of hurting me, scared that I was getting too involved too soon, or maybe scared of other things. There are things we need to be open about, but why put the horse before the cart?

                    If you're comfortable enough with someone to be having sex, then just relax. You'll feel when it's right.

                    Even the most compassionate, understanding man could get nervous if he hears too much too soon. As he gets to know YOU, then he will care about YOU. IC is just something you have. My boyfriend and I laugh when the IC causes problems.....it's so much more fun than getting upset. I truly believe he's comfortable with it because I try to be matter of fact about it.

                    I think most men will be caring and compassionate. But we must remember they are from Mars and cannot handle too much information at once.

                    I

                    Comment


                    • #11
                      Hey, although I am married, and I was diagnosed with IC WHILE I was dating my hubby, I think I can weigh in to this as I was a dating woman only a little bit ago and I definitely HAD the disease before I was diagnosed.

                      IC is definitely too much info. on first date. When I was dating, I actually turned my weak bladder into a bit of a joke. Toilet humor is very frequently the best kind of humor for men anyway in my experience, and a "small bladder" can have its moments if you can laugh at yourself. As for the pain, I grouped that under the blanket statements of "I have a bladder condition." or "I do have pelvic pain" or whatever.

                      As for alcohol, do you get migraines in addition to IC? I always did, and men know what those are without having to ask. Alcohol brings on migraines as well as IC flareups frequently, so just say you can't drink because it can give you a migraine. Thats not a lie, and you dont have to go into the IC. If you don't get migraines, just say alcohol, like caffeine makes you pee a lot. Again, I would have joked about it and my small bladder....

                      Regarding sex, I was a wait until... person myself. But even if youre not, sex is an intimate experience anyway and if youre at that stage with someone, youre finally at LEAST at the stage to mention your condition. I would definitely say you LIKE sex, that you WANT sex with that man, and that its not anything to do with them. I would then go through all the sex advice you can find on this website. Many men like "experimentation" anyway, and if you can spin it into some kind of experimentation sexual experience I think you might find that you are both satisfied. Thats how my hubby and I began our sex life and I had IC.

                      Comment


                      • #12
                        I agree with most of you that you probably don't need to bring up i.c. on the FIRST date, but I think if you really start to like somebody, and you find yourself engaging in pretty depthful, open conversation with them, then you should be upfront about your condition if you want to be. Personally, I agree with the person who said that if the guy ditches you after that, he probably wasn't the right guy to begin with. None of us asked for i.c. And while I dont think we need to advertise it at every chance we get, it's nothing to be ashamed of or something you should feel you have to hide. You aren't IC; it's a condition you have.

                        In my case, I've been pretty up front (in a matter of fact, non-emotional way) about my i.c. with guys I've started dating (at the earliest and most appropriate time) and most of them have taken it pretty well. The ones who say "It's okay, you don't need to tell me about it..." are the ones that aren't worth your time. Because quite frankly, you need somebody who will hear about it, who wants to learn about it, and who wants to make your life as pleasant as possible in spite of it! It's not exactly easy telling somebody that... and just like most of us wish we didn't have to suffer with this darn thing, we also wish that we didn't have to apologize for it, or have to "explain" it in the first place. BUt ultimately, I think you will feel relieved if you do... (when you're ready).

                        As for sex... there are many different things you can do that don't involve intercourse (if that's painful for you). Personally, I think being upfront (as soon as you feel comfortable doing so) is fair to the person... because some guys are jerks and those ones may want a girl who can have sex for 8 hours a day in 20 different positions. For me, that's just not a reality (OUCH!) I need to date a man who's open enough to explore other ways of being intimate, etc. So I would probably bring this up as things were starting to get hot and heavy. I would just say "Look, this is kind of hard for me to talk about, and I don't want to freak you out, but this is my situation and these are the things that I can and can't do." I would try to make it sound as NOT scary as possible and just be upfront about your boundaries. And focus on the positives instead of going off about the negatives and the "can'ts".

                        So I guess what I'm saying is, if you really think the guy is a sweetheart... then be honest about your i.c. Don't feel like you have to hide it. It's not a dirty little secret... it's a condition that you deal with. And while it doesn't define you, it is a part of your life. IF somebody is going to be in your life, then it's going to be a part of their life too!

                        Good luck and DON'T worry. There are amazing men out there.... and I'm sure you are will find somebody! All the women on hear who have amazing husbands always inspire me...

                        Love and light,

                        Caroline.
                        Caroline
                        * Diagnosed in Nov. '06 after in office cysto and symptoms alone. (3 urologists later..)

                        * Started DIET, 400 mg Elmiron, 50mg Atarax, 20-50mg Elavil around that time and felt improvements at 2 1/2 month mark. 6 months even better and 9 months was pain/symptom free.

                        *Stopped meds at 3 year mark and enjoyed another 2 years of remission! Eating and drinking what I wanted.

                        *****************************************
                        Symptoms have returned Nov.'12 with stress from grad school. Back on same dose of all 3 drugs.


                        Things that help me: My shiba inu, hot water bottles and baths. Oh, and white chocolate!!!

                        Comment


                        • #13
                          i did it!!!

                          I just wanted to add to my post that I WENT on a lunch date recently and right there on the first date, I told this guy about my i.c!!!

                          It came up because were were at a restaurant and he was mentioning that he had some dietary restrictions (no cheese)... so I said, I do too. And he asked what and I told him, and he asked if I had always been "allergic" to those things and then I explained that no, it wasn't allergies it was a condition I had. He asked what it was but said "you don't need to tell me if you don't feel comfortable" and I was like "Nope, I don't mind. BOth my parents are doctors and I'm quite comfortable talking about stuff like that" and then I explained to him about my i.c (in a brief, light-hearted way). And we even sort of joked about sexy it was to explain it (holes in my bladder! sooooo hot!!) and then we changed the subject and talked about something else.

                          Well.. just to give you a vote of confidence, this guy has been calling me non-stop to hang out since then. So that just goes to show that if you approach the situation properly and the guy is a good guy, it can be totally fine talking about i.c. (EVEN on the first date!)

                          Love and light,

                          Caroline.
                          Caroline
                          * Diagnosed in Nov. '06 after in office cysto and symptoms alone. (3 urologists later..)

                          * Started DIET, 400 mg Elmiron, 50mg Atarax, 20-50mg Elavil around that time and felt improvements at 2 1/2 month mark. 6 months even better and 9 months was pain/symptom free.

                          *Stopped meds at 3 year mark and enjoyed another 2 years of remission! Eating and drinking what I wanted.

                          *****************************************
                          Symptoms have returned Nov.'12 with stress from grad school. Back on same dose of all 3 drugs.


                          Things that help me: My shiba inu, hot water bottles and baths. Oh, and white chocolate!!!

                          Comment


                          • #14
                            CarolineJulia,

                            I'm so happy for you!

                            I've rethought my response, and I agree with you. What is the big secret afterall? I'm not at all uncomfortable telling my female friends about my bladder problems, but I choke up around men (I told one close male friend and that was hard enough). At this point my frequency is up, so it might not be an option even to hide it for me. Going to the bathroom every half hour is kind of a noticeable thing!

                            No more secrets, no more trying to "hold it" to avoid talking about my IC. I won't do it anymore, it hurts too much.

                            ~*miz_sunshine87*~
                            19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            Start of IC symptoms- Summer 2003 (after a UTI)
                            Dx- February 2004, after hydrodistension (ouch!)

                            Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

                            Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

                            Comment


                            • #15
                              hiding it is not an option for me...i pee like 40+ times a day...it sucks! but i also was friends with the person i am dating and have been dating for over four years before we started dating so they already knew. i always get nervous about telling people and it never ends up being that big of a deal. good luck to finding that someone...i totally agree that if they are not nice about it when you do tell them, then it is totally not the right person for you. i have had people be rude to me, and i just brush it off and ignore those people.

                              Comment

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