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  • whensexhurts.com relaunched!

    Just relaunched whensexhurts.com as a resource page for patients struggling with pelvic pain and intimacy. I hope it helps! I'll be adding more resources. New book also released with, ironically, the exact same name of our website! It looks good!!! http://www.whensexhurts.com

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    Awesome, good to see. My boyfriend actually told me the other day that he has been doing more reading about IC and sex, to understand what I am going through. Communication is a great way to work around a chronic disorder and sex. I had been having severe clitoral pain, and it was making sex not so fun for me. My physical therapist recommended that I use my lidocaine cream my doctor had prescribed for me at least 5 to 10 mins before (it usually burns, but we waited for it to go away), and it actually worked! I actually did not have pain after sex either, just some soreness. We were so excited, it was a big hurdle for us. I could actually enjoy sex. I wish my gynecologist would have mentioned that advice to me! Haha.

    I am thankful to have a boyfriend (been together almost 5 years) that really supports me through everything and cares about me in so many ways. He is my best friend. He has told me so many times that we do not have to have sex if I am in pain or not enjoying it. Communication is the best part. Now he has learned massage from the physical therapist so we can do this prior. He has been there through every step of the way. Just wish more men were like that. I will have to look into some of those books on the sight though!
    24 year old Ph.D student in Organic Chemistry

    Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

    My blog (just started):

    http://imaginenoworries.blogspot.com/

    Medications:
    Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
    Cymbalta 60mg
    Gabapentin (Neurontin) (3200mg/day)
    Zyrtec 10mg
    Xanax 0.5mg up to 3 times a day(spasms, anxiety)
    Uribel
    Macrobid 100mg (only on days when doing an instill)
    Albuterol
    Yaz Birth Control (3 months on birth control, then period)
    Pelvic floor therapy
    Valium 5 mg (inserted vaginally)
    MScontin 30 mg (3 times a day)
    Percocet 10/325mg (every 6 hours)
    TENS Therapy, CVS machine, 30 minutes once or twice a day
    Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

    *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

    Instill:

    Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

    Used to do these:

    Solu-Cortef (act-o-vial) 100 mg: 2 mL
    Marcaine (bupivicaine) 0.5 % 25 mL
    20,000 units Heparin
    3 mL sodium bicarbonate

    Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

    Comment


    • #3
      You are so very lucky to have found a man who "gets it." Good for you! And so glad you found some solutions, it is sometimes a difficult subject to talk about. Morph him a million times and put him out there. Way to go! Jill, wife of Bob

      Comment


      • #4
        Thanks. I know that I am so lucky to have him. He is the greatest, and really tries to understand what I am going through. I had clitoral pain and vaginal pain for a while, and was afraid to mention it to the doctor. Finally I mentioned it to my urologist, who said that it can happen with IC, and then my gynecologist. Also, my PT who gave me the awesome cream advice. So I have realized that even if it is a sensitive subject, you need to talk about it. It is so important to discuss what is going on with your body instead of hiding it. Hiding it won't make it better. Also, communication with your partner is just as important. He takes things slow and understands it. I am seriously blessed!
        24 year old Ph.D student in Organic Chemistry

        Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

        My blog (just started):

        http://imaginenoworries.blogspot.com/

        Medications:
        Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
        Cymbalta 60mg
        Gabapentin (Neurontin) (3200mg/day)
        Zyrtec 10mg
        Xanax 0.5mg up to 3 times a day(spasms, anxiety)
        Uribel
        Macrobid 100mg (only on days when doing an instill)
        Albuterol
        Yaz Birth Control (3 months on birth control, then period)
        Pelvic floor therapy
        Valium 5 mg (inserted vaginally)
        MScontin 30 mg (3 times a day)
        Percocet 10/325mg (every 6 hours)
        TENS Therapy, CVS machine, 30 minutes once or twice a day
        Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

        *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

        Instill:

        Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

        Used to do these:

        Solu-Cortef (act-o-vial) 100 mg: 2 mL
        Marcaine (bupivicaine) 0.5 % 25 mL
        20,000 units Heparin
        3 mL sodium bicarbonate

        Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

        Comment


        • #5
          Having a partner willing to communicate is essential, I think. I'm blessed with a man who has known about my IC from day 1 and is so caring and wonderful with me. He even wants to meet my PT to see if there is anything he should know to help me stay out of pain.

          also, awesome site. I think it's something that a lot of women deal with, IC or not, but are afraid to say anything about.
          Clark College Junior, wanting to go to UW for Fine Art Degree
          Major: Fine Art
          Taking a course in medical transcription, must work from home
          IC diagnosed 07/07
          PFD developed sometime during late 07
          Uterine Cyst removed 12/09
          Chronic Pelvic pain developed in 09
          Chronic Back Pain developed in 09
          Possible vulvodynia

          Medications: Elmiron, Detrol LA, BC, Prosed DS, Celexa for anxiety, depression, and pain,
          No longer taking: Atarax (No help),Amytriptalene (no effect, became suicidal), Ditropan (no effect), Probiotics (sick to stomach), Bactrim (hopefully cleared up my UTI!), avoiding Pyridium unless absolutely needed (sick to stomach), Prozac (helped anxiety, no pain relief), Pamelor (gained nearly 20 lbs in a short time, no anxiety relief), Valium, Vicodin, percocet (none of these meds even touch my pain >_<)

          Current Therapies: acupuncture, heat, Vicodin if needed, lots of laying down, gaming as a distraction, Pain Management classes started 9/22, Wanting to try TENS therapy

          Comment

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