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  • So I just want to complain....

    Ok, guys and gals, I just want to whine for a minute.

    Lately, sex has been absolutely excruciating.

    I have always had pain with sex, but had managed to get a lot of it under control by finding a great lube and some positions that don't allow my husband to hit my bladder head-on during lovemaking. I've had adequate pain meds - but importantly, my IC was doing very well for quite some time.

    Suddenly, though, over the last few months, the pain has increased and changed. Previously, my pain was divided into two distinct parts - a "ring" of pain around the vaginal opening on penetration, which is due to pelvic floor dysfunction and could be relieved by relaxation techniques, and the a deeper pain on thrusting when dear hubby would hit the bladder itself. However, lately when we've had sex, the part between these two parts has filled in -it's felt like my urethra is being literally torn apart. I can feel every little bit of that poor urethra along the top side of my vagina, like a thousand little fires being lit inside. This, obviously, is extremely unpleasant, and for the first time I find myself actively avoiding sexual situations. And that is also unpleasant.

    I've listened to all my relaxation stuff on my iPod, used half a thing of lube at once and squirmed into every position in the Kama Sutra, to no avail. Finally, I went to my urologist and told him - he has found nothing wrong with me other than the usual IC. Essentially, I've developed no new problems - it seems to be just a flare-up of the old ones.

    We have decided to try doing some home instills again... I'd stopped doing my usual instills because my IC was doing so well for a while there. This time we'll be using just lidocaine and bicarb and doing them only before sex to try to numb up the bladder and urethra a bit. I'll be picking up my supplies at the pharmacy once again today, so hopefully this plan will help a little.

    But geeze... what a royal pain (literally)!!!

    Well... I had to rant somewhere.... even after all these years, I still get angry with my body when it decides to misbehave in such a fashion. *SIGH*
    ****
    Jen

    *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.

  • #2
    Sarojini, I know what you are going through, you have all my support!

    Since the onset of my symptoms, last April, I couldn't have not even 1 intercourse, it hurts too much..

    The anxiety and the sense of guilt towards my boyfriend made my sex drive go below zero... and we did some couple counceling...

    I've seen a sexual psycotherapist, that advised to start sex therapy once my symptoms are more under control.. she said that the process could be very slow.

    I really hope to have my (our) sex life back

    Hughs and Hugs

    Comment


    • #3
      I truly know how you feel.. I Just wish me and Hubby could have a normal sex life again.

      Did your Dr mention that it is possible that you could be having symptoms of Vulvodynia. Just throwing that out there for you. Cause I know that is how mine started with just some burning and pain feeling during intercourse. Then it gradually got a little worse and started effecting the whole area down there.

      But anyhow.. Rant anytime.. I know I do when I need to! This is what we are here for..((((hugs))))
      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


      • #4


        I wish I could help.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, 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.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          I hope the instill works. I get so mad at IC. It seems to rob us of everything that is supposed to be enjoyable. Like sex and eating... (((Hugs)))
          Sharon

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

          Where I can be found most days.



          Link to the ICN Patient Handbook:
          http://www.ic-network.com/handbook/

          Link to the IC Diet:
          http://www.ic-network.com/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.

          Comment


          • #6
            Sharon, no kidding! I'm with you!!!

            Instills used to help with this sort of thing, so I am hoping they will again. We will try it in a few nights - we tried without last night, and I am still hurting today, so we need to give things a few days to calm down down there and go back to baseline so that I can get a good reading on whether the instill helps or not.

            I can't believe I'm still raring to go with sex, though... it's like, the mind is willing but the body ain't able...
            ****
            Jen

            *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.

            Comment


            • #7
              Ugh, I'm so sorry. I am so worried about my urethral pain and sex. I have a seriously sensitive/painful urethra as well as bladder-- and most of the time my internal physical therapy for the pelvic floor dysfunction is excruciating!! Even any movement of the dilators hurts. I can't imagine how bad actual intercourse would hurt me in the state my "area" is in.

              I think some people on here have used urethral suppositories to help with pain.


              I hope you and your husband work together to find a comfortable and pleasurable solution!!
              Lifelong IC symptoms, only diagnosed Oct 08 with cysto/hydro; lifetime IC has led to pelvic floor dysfunction, uterine prolapse, and vulvodynia. Fun!

              Comment


              • #8
                I am 24 years old and had decided to wait until marriage to have sex...unfortunately IC found me before a husband did and now I'm so mad I waited because is it always going to hurt? Does anyone in this forum have sex with no problems? How am I supposed to get/keep a boyfriend/husband when I cant have sex?

                Comment


                • #9
                  I feel like i am getting punched in my very sore bladder with each stroke. I also have constant urethral pain the whole time and after, with burning urination and sore vagina. I get awful stomach pains and cramps too. I haven't found anything that helps so far. It doesn't seem to matter who the person is or how "gentle " they are. I am so sorry you are having similar issues, Maybe use a heating pad after? at least for the stomach pain, for the urethral maybe some urojets?
                  my name is Katie, 22 yr old mother & nursing student. I want to be a writer and midwife.

                  I have severe IC w/ hunner ulcers and urethritis with lesions ENDO, chronic pelvic pain, PFD adhesions, scoliosis, arthritis,migraines,asthma chronic pain.

                  Mother to a beautiful little girl. She has my heart and she's everything to me. Thinking positive and consciously untensing tense muscles helps a ton!!!! physical therapy also helps a lot.

                  Comment


                  • #10
                    Sarojini,

                    Thankyou for sharing your complaint. I was crying when I read it. It was like my experience. I have never had comfortable sex. And I felt like I was the only one. I don't feel so alone. I don't have a solution to your problem. I just like to send my support and say thank you for being brave enough to share.

                    Christine

                    Comment


                    • #11
                      It is just not right that we have to watch what we eat,our activities and our sex lives!! Life just isn't fair!! I have had ic for over 5 yrs and mine has gotten worse. It is just so hard not to have the intimacies with our spouse's without being in the worse pain! My husband hates touching me because of the pain it causes. I have lost all hope that it will get better! So now it is about making it passable (or should i say lower the pain) afterwards. Find the positive in the negative. What helps at that moment !!!! Good luck!!!
                      mom to 3 wonderful kids


                      IC symptoms 7/03,
                      hysterectomy 11/04,
                      prolapse cervix 7/07
                      diagnosed: IC 2007
                      IBS 2008

                      Comment


                      • #12
                        Sarojoni, I feel your pain. I have been dealing major pain after sex lately myself. It's very frustrating. I hope things get better for you ASAP and you can feel better next time.
                        Natalie

                        I am multi-diseased with : MS, IC, IBS, and PDF

                        Diagnosed with IC - May 2006 IC symptoms : burning and frequency

                        Diagnosed with MS - March 2004 MS symptoms numbness in arms and legs, muscle weakness, major lack of bladder control and increasing bowel control problems. I wear Depend underwear 24/7.

                        Diagnosed with IBS - Sept 23, 2008

                        Diagnosed with PFD - Oct 1, 2008

                        Divorced Oct. 2009

                        IC Meds

                        Elmiron
                        Hydroxyzine
                        Elavil
                        Lortab for pain
                        Uristat

                        MS Meds:

                        Betaseron
                        Novantrone
                        Corticosteroids
                        Skelaxin ( muscle relaxer)
                        Neurototin for pain


                        "For God so loved the world, that he gave his only begotten son, that whosoever believeth in him shall not perish, but have everlasting life." -John 3:16

                        The Serenity Prayer:
                        God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

                        Comment


                        • #13
                          I keep saying someone needs to take this hot poker out of my urethra!!!! When people ask what IC feels like and I tell them (including my husband), to imagen a red hot poker being put in your like a cathider and then having glass shards in your bladder, not to mention the vagina that feels like you just got back for your honeymoon but of course you have not had sex in months! Pain with no reward. Can't pee, cant have bm and can't eat my fav's!

                          by this time my husbands eyes have glassed over and he just holds me!
                          It is hard to see the humor, I know but when you can, let it all hang out. Those days are few and far between.

                          I hope you feel better very soon. I know you will not feel perfect, I know. But I hope peace and love for you!
                          DeAnna:


                          IC
                          Irritable Bowel Syndrome
                          FIBROMYALGIA
                          and more......

                          PLEASE FORGIVE SPELLING

                          Comment


                          • #14
                            It is so great to know I'm not alone. I am 24 and just got married in August. Somehow on my honeymoon my IC disappered. I was able to have a normal honeymoon ate what i want, did what I wanted, drank all i wanted with not even an inkling of an ic symptom. My husband joked that we were going to move to St. Lucia if my symptoms returned we got back home. I kid you not, I had a flare start while waiting to pick up our luggage at the airport when we returned home. Since then (6 months !!! ) we have had sex a total of 4 times. I'm not sure who i feel more sorry for me or my husband. I had 2 weeks of relief and decided to try the whole sex thing again...followed all the necessary steps reccommended for those of us with IC before and after...and guess what no pain during sex or that night. HOWEVER, the next morning I woke with horrible feelings of urgency that haven't let up in a week and I feel like my urine has turned to acid. I was praying I just had an infection...but oh no, just IC again. I have been barely able to work this week and I'm looking at medical leave again. All because I wanted to have sex with my husband.... I agree with everyone, i just want to do what i want and eat what I want without ic getting in my way.
                            Diagnosed in August 2001 at the age of 17

                            Distention in Feb. '02 which helped me reach remission up until October of '08

                            Allergic reaction to all antispasmodics in October '04

                            2nd Distention Dec '07
                            3rd Distention Dec. 24th '08
                            2nd and 3rd distention followed by rounds of DMSO treatments

                            Interstim Trial 2/18/09
                            Permenant Interstim Implant 2/24/09


                            It took me years to understand that I wasn't going to "cure" my IC. I still struggle with this almost daily, but I'm beginning to understand that I can LIVE with ic, with the right treatment.


                            Daily Medication:
                            NONE, trying to conceive!
                            Acupuncture once a week (really would benefit from 3 times a weeks, but can afford it)

                            Comment


                            • #15
                              Romal - I don't always have pain with sex. And a lot of times I don't have pain during just after. So don't get discouraged before you know - it may not be as bad as you think.

                              Heather

                              Comment

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