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Jen's Tips for Great IC Sex

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  • My personal opinion here but isn't sex pretty "heavy", I would think if you care enough about someone to contemplate sex with them that you would know them well enough to talk to them about your condition. I just feel that going to that level is opening up more of a commitment to someone and that he deserves to know what sex might cause. Isn't it unfair to him to not be open with him?
    Please understand this is MY opinion and I am not trying to tell you what to do, just trying to put a different perspective on the situation. I wish you the best, whatever you decide to do. I honestly don't know EXACTLY what I would do if I were single, I was diagnosed with IC after 13 years of marriage so I do have a different view point. I do know that if I had been dating my husband when I was diagnosed and told him alll the facts that he would have been right there for me. I also know that if I were going to possibly be in pain after intercourse and didn't let him know ahead of time, he would most likely feel very guilty and like he caused me pain. I wouldn't want him to feel responsible for something that has nothing to do with him. If he knows he will be able to be more in tune with you and cautious so not to hurt you.
    Take care, I wish you happiness and pain free days!
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • Well I know how you feel. I get pain several hours after sex. I take valium after and that helps. I know this is difficult to talk about. This has been the biggest issue for my husband and me, and we've been married 20 years, but we do other things instead. I think you should just put it out there. He may surprise you. If it feels awkward then he isn't right for you. Good luck. Heat helps a lot and I do break out my heating pad during and after!

      Suzanne

      Comment


      • Bad Experience but thanks Jen

        I hadn’t had a sexual relationship in years. This man was about 9” large and large in girth also. Being very uninformed I asked him if other women had commented on his being large. He obfuscated until one day I was insistent and he said “well maybe one or two.”: I looked up sizes on the internet and asked a nurse friend I know. The information I obtained and her answer let me know that his size was not normal and having sex for hours at a time was not normal either. That me having pain for days afterwards was not just because of my I.C. I also had to take “Lyrica” for the frequency as nothing else helped when it was so bad.Taking Lyrica makes it impossible for me to function, for instancer I cannot drive. For about 10 months I was in intense pain and in a huge fog from the Lyrica. I do need to say here that during the sex act itself I had no pain it was only after.

        I just went to physical therapy and asked the therapist who informed me (some of it I had read) that he was most probably hitting my cervix and that his size and the length of time we went at it women were not made for. That it is likely that the pain had little to do with my disease! I think it had some because it has been about 4 months and I am still healing.

        I tried all the tips and they did help.

        So now I know that what I experienced was not normal but I am grateful for the tips so that if I have another relationship I can have a reminder from the start and hopefully have a good experience, with pleasure not pain1!!!!

        As I had an extreme experience I thought I would post what helped me. Some of it my PCP told me to try.
        I took the following:

        1) pyridium an hour or so before as an analgesic

        2) valium an hour or so before to help with the spasming

        3) I use my “rescue” instill with a steroid for anesthetics, marcaine to numb the bladder, Sodium bicarbonate to alkalize (and heparin for long term help with the lining) I keep the instill in during sex and void after so the effects last during and after sex

        4) I drink “brioschi” or “gingera” , buffered sodium bicarbonate, to alkalize the urine in the bladder before and after sex (I drink this every morning and at bedtime and several times during the day but not around meal times as not having as much acid in the stomach can interfere with digestion some. These OVT medications are better than sipping baking soda because baking soda causes reflux.

        5) I take morphine or oxycontin which I take daily for pain and be sure to take the most prescribed at least an hour before

        6) Make sure penetration is very slowly as described in the tips

        7) Again as in the tips nothing rough

        8) Use a lot of lubricant as per the tips

        9) For me DEFINITELY DO NOT MESS WITH THE G-SPOT this caused me many weeks of pain in bed!! Also in the tips.

        10) Urinate always after and if you have a tendency to get infections after sex ask your doctor for a low-dose, broad spectrum antibiotic to take afterwards to reduce your risk for infection. As per Jens tips

        11) My doctor suggested taking a warm bath after sex and it helped immensely. Unfortunately as soon as I got out of the bath the pain came back immediately!

        12) My doctor suggested using a vibrator especially on the pelvic floor to relax those muscles but I did not get any help from it. He also suggested masturbating with or without the vibrator, as per Jens tips

        13) After sex I tried using a glass “penis”. I put it in cold ice water and then inserted it for a few minutes then put it back into the ice water and inserted it… I’m not sure if this helped. I do know that after trigger point therapy putting a cold pack in my crotch area felt wonderful. Jens tips suggest warm might help also.

        14) If I can suggest anything it would be not to go it alone as I did. I suffered intensely for about 10 months and it is four months later and I am still healing!

        I take the first 5 suggestions daily whether I am having sex or not.

        Thank you so much Jen I wish so much I would have read your tips before this last relationship, it would have saved me a lot of hardship. I am still very angry that this man made me think his size and going at it for hours was normal and how uninformed I was. As my trigger point therapist tells me now I would have had problems regardless of the I.C. I would like to know about "trigger point injections"?

        15)Stress ,try not to hold onto anger or hurt, for me it has caused increased pain and frequency!!
        THANK YOU SO MUCH JEN

        Comment


        • Hi Jen!!

          Thank you for this!!!!!

          With my fibro, IBS and now IC sex has become really, really painful at times. It is so nice to know I am not alone in this and it is great to read some tips!

          Thank you

          Kristine.

          Comment


          • pain with sex?

            I haven't been diagnosed with ic (yet, my uro has me trying out phys therapy first to see if it helps at all) but severe pelvic floor dysfunction. upon the initial penetration during sex it is always extremely painful. we go VERY slow and only inch by inch until its completely in. i was wondering if anyone else feels a burning feeling like there is too much friction or burning muscles during sex. before i was diagnosed with pfd i kept thinking this was a yeast infection and was at the gyno 4 times in one month trying to figure out what was causing this feeling, each time being told no infections, no stds, no visible inflammation. SO frustrating! some days sex is ok once past the initial entrance, and other days it almost feels like an open wound being rubbed raw and we have to stop immediately. does anyone have similar feelings and is it normal?? thanks!
            Pelvic Floor Dysfunction May 2011 from bad UTI
            21 years old, horseback rider (although this has been practically eliminated from my daily routine since the PFD)

            Current Meds: neurontin 600 mg
            valium 2mg as needed

            Comment


            • Lucky

              I always thought I was lucky that I did not have pain during sex.
              I think if I would have at least had it at the time I would have avoided it. Instead I did not feel any pain until that night or sometimes a couple days later but it would lasts for weeks sometimes. I lived without sex for years and there are a lot of other ways to fill up my life and get the companionship and/or nurturing I crave!

              I know there are several different ways to help yourself with this. cold for some warmth for others. Go a little at a time/ Not always have penetration and trigger point therapy to think of a few a read about.
              Good luck.

              i

              Comment


              • Originally posted by kdream View Post
                I haven't been diagnosed with ic (yet, my uro has me trying out phys therapy first to see if it helps at all) but severe pelvic floor dysfunction. upon the initial penetration during sex it is always extremely painful. we go VERY slow and only inch by inch until its completely in. i was wondering if anyone else feels a burning feeling like there is too much friction or burning muscles during sex. before i was diagnosed with pfd i kept thinking this was a yeast infection and was at the gyno 4 times in one month trying to figure out what was causing this feeling, each time being told no infections, no stds, no visible inflammation. SO frustrating! some days sex is ok once past the initial entrance, and other days it almost feels like an open wound being rubbed raw and we have to stop immediately. does anyone have similar feelings and is it normal?? thanks!
                Yes yes yes. This was my life about 6 years ago. My husband and I didn't even have sex on our wedding night because it felt like a blow torch as he was penetrating me (and no, I was not a virgin...we had a lot of healthy, painless sex before all of my problems started!) It felt just as you described. It got better once we got going, but the initial penetration was HORRIBLE.

                I was never diagnosed with anything since it mostly occured AFTER my IC diagnoses and I was no longer regularly seeing my urologist who was the only doc to ever really take me seriously and try to help with my problems
                Diagnosed with IC in 2004 at the age of 19
                12 weeks of instillations (don't remember what)
                Remission from late 2005 until August 2011.
                Married in 2005 - Our son was born in 2008!

                IC acting back up after a severe UTI in June followed by another mild UTI in August.

                Current Treatment
                ~IC diet - not strict, but avoiding most things including my beloved soy chai lattes. Drinking only water and blueberry juice. No tomatoes or anything spicey.
                ~1/2-1mg Ativan per day - has been the only thing to help! Praying that my doctor will let me continue with it
                ~25mg Doxipen
                ~Azo as needed (don't really notice a difference)

                IC symptoms get progressively worse throughout the day. Sleep and constant distraction are my only refuge!

                Comment


                • Pain after Sex

                  In the past I've had pain with sex, which I think was b/c of my PFD. Now my PFD has really calmed down, and I only have a little discomfort upon penetration, and it goes away in a couple seconds. In the past few months though, I've been having terrible bladder pain after sex, about 4-6 hours later, but no pain during sex. Does anyone have any advice on how I can prevent this? I've noticed it's worse if he's on top, so we avoid that. I've also started using a heating pad within an hour, and taking a bath before bed that night, and taking a urelle and muscle relaxer after. It seemed to work at first, but this past weekend, it didn't seem to work at all. I would appreciate any advice!! Thanks!!
                  I just started a IC diet/low-oxalate diet blog! http://jennysicparty.blogspot.com/

                  Comment


                  • ugh it sucks

                    I am surprised to see there aren't more threads in this section honestly- intimacy is one of my biggest issues with IC though I have been working really hard at it. I expected to see a lot of people posting about it!

                    It just rarely... feels good. Usually just makes me feel like I need to pee, or I become far too aware of my bladder. Seriously kills my drive- that's for sure. I have a patient partner of 4 years and it's been through that entire 4 years of hard work and learning about pelvic floor spasming and reading books and even going to sex stores and asking them questions to gain any progress in this area. I think things have been improving a lot... but I still honestly feel like I am missing out on the connection. Other things to do are fun... but it really sucks to not be able to do things the good ol traditional way without some measure of pain or over awareness of your bladder. I'm young and I honestly feel like I never have experienced fulfilling sex. I am not expecting things to be super amazing... I just feel like I put a lot of thought and work into finding the right person to share that part of myself with and I feel broken.

                    I do see a wonderful therapist. I work really hard on my diet. I do self massage and stretches and breathing stuff to try and help and read a lot of books. Just hard not to feel depressed about it and the affect it has on my relationship. Ive never ever had "good" sex. Im glad Im getting better at controlling me pelvic floor though.
                    ------
                    26 year old in process of being diagnosed with IC, also diagnosed with environmental illness, chronic pain, extreme food sensitivities. read my into here

                    Comment


                    • Lubricant

                      My Naturalpath suggested just plain coconut oil as a lubricant. I've been using it without any irritation or fear of infection. It may not last as long as other lubricants but if it's good enough to put into my body without bothering my bladder I figure it's good enough to use everywhere.
                      Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                      Tried:
                      Detrol:only took one pill and it made me sick
                      Elmiron:caused horrible pain(took 1 week)
                      CystaQ:caused alot of burning and pain(only took one pill)
                      Wellbutrin:only on it for three days as it caused alot of bladder pain
                      Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                      Prelief:made my bladder burn and feel tingly.

                      Take:
                      Uracyst:Started May 19 2011
                      Enablex:take one pill daily with no issues
                      Naproxen:for pain as needed
                      Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                      Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                      Supplements:Whey Protein powder daily
                      Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                      Comment


                      • Coraline I often say that I feel broken too. Why can't I just have sex like everybody else. It makes me feel abnormal. I remember even before my IC diagnosis I always had pain during sex. I too have never had the opportunity to have "normal" sex. It's really discouraging.
                        Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                        Tried:
                        Detrol:only took one pill and it made me sick
                        Elmiron:caused horrible pain(took 1 week)
                        CystaQ:caused alot of burning and pain(only took one pill)
                        Wellbutrin:only on it for three days as it caused alot of bladder pain
                        Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                        Prelief:made my bladder burn and feel tingly.

                        Take:
                        Uracyst:Started May 19 2011
                        Enablex:take one pill daily with no issues
                        Naproxen:for pain as needed
                        Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                        Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                        Supplements:Whey Protein powder daily
                        Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                        Comment


                        • Just be careful of using oils if you are using condoms for birth control. Oils break down the latex and can cause the condom not to work.

                          I've been using slippery stuff lube for years. It's never bothered me, and I'm extremely sensitive, and it's safe for use with condoms. My doctors and PT also use it on their patients.
                          I just started a IC diet/low-oxalate diet blog! http://jennysicparty.blogspot.com/

                          Comment


                          • JennyBird thanks for providing the extra info. I don't use condoms so I didn't even think about that.
                            Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                            Tried:
                            Detrol:only took one pill and it made me sick
                            Elmiron:caused horrible pain(took 1 week)
                            CystaQ:caused alot of burning and pain(only took one pill)
                            Wellbutrin:only on it for three days as it caused alot of bladder pain
                            Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                            Prelief:made my bladder burn and feel tingly.

                            Take:
                            Uracyst:Started May 19 2011
                            Enablex:take one pill daily with no issues
                            Naproxen:for pain as needed
                            Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                            Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                            Supplements:Whey Protein powder daily
                            Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                            Comment


                            • Most welcome! I had trouble with other forms of BC, the pill and anything involving hormones flared my VV horribly and gave me bad vaginal infections, and the diaphram put pressure on my bladder when it was in. Condoms were the only thing left! I'm actually pregnant now, so no need for condoms at the moment...haha!!
                              I just started a IC diet/low-oxalate diet blog! http://jennysicparty.blogspot.com/

                              Comment


                              • JennyBird congrats on the pregnancy!
                                Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                                Tried:
                                Detrol:only took one pill and it made me sick
                                Elmiron:caused horrible pain(took 1 week)
                                CystaQ:caused alot of burning and pain(only took one pill)
                                Wellbutrin:only on it for three days as it caused alot of bladder pain
                                Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                                Prelief:made my bladder burn and feel tingly.

                                Take:
                                Uracyst:Started May 19 2011
                                Enablex:take one pill daily with no issues
                                Naproxen:for pain as needed
                                Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                                Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                                Supplements:Whey Protein powder daily
                                Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                                Comment

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