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  • #16
    Sex can be a nightmare for me. Sometimes I can't even begin sex b/c of PFD. I am starting internal massage soon in hopes of helping this.
    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

    My Pelvic Pain Blog

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    • #17
      When I had milder IC symptoms, sex seemed to cause 99% of my pain, flares, and problems. It's definitely frustrating to deal with, because I follow all of the suggestions from my doctor and this board, but sex STILL hurts. My uro recommended physical therapy (but I have been too chicken so far to do it!)
      Medications and Supplements:
      BladderQ
      Pyridium
      D-Mannose powder
      Cranmax

      Lifestyle:
      Lacto-ovo-vegetarian and IC diet
      Meditation
      Positive mental attitude!

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      • #18
        Originally posted by soymilk View Post
        When I had milder IC symptoms, sex seemed to cause 99% of my pain, flares, and problems. It's definitely frustrating to deal with, because I follow all of the suggestions from my doctor and this board, but sex STILL hurts. My uro recommended physical therapy (but I have been too chicken so far to do it!)
        I strongly encourage you to give PT a try. With the right therapist, it's a lifesaver. At least, it has been for me! It has all but done away with my PFD and helped to calm my IC also. My bladder hardly hurts at all now when I have sex.
        ----------------------
        -Amanda
        34 years old, bladder symptoms all my life
        diagnosed with PFD and VV October 2009; IC May 2010

        Current meds:
        Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
        Other past treatments:
        IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
        Tried and didn't work:
        Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

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        • #19
          I second trying PT. I hate to think of where I would be right now without it.
          Symtoms started July 2010.
          Severe pelvic floor pain only.

          2 time PT graduate!
          In medical remission since August 2011; able to eat and drink anything I want currently.

          IC meds:
          200 mg Elmiron in the morning
          100 mg Elmiron @ night
          Macrobid after intercourse

          03/11 07/11 01/12
          If at first you don't succeed: 07/26/2013!

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          • #20
            I don't even think I would know how to go about getting PT for PFD. THe docotors here in FL are only knowldgeable regarding the elderly, prostate problems, and leaking....... I am having to explain to Dr.s what IC even IS.

            I too have pain every time I have sex. Mostly because I tear/rip.........every.....single.......time. I have to use Premarin cream every day to try to prevent this, but the only times I don't tear or have a lot of "stretched-too-far-pain" is if I am super excited/ lubricated/right position = Basically if the moons and stars are aligned.

            It's is rough on us IC'er. Sex becomes so cerebral. Each gyno I have had tells me that I am thinking about it too much, and not allowing my body to "receive." Ummm, well if you know it's gonna hurt 80% of the time, you would too! So my husband is understanding and patient, and foreplay (cannot stress this enough) can sometimes make or break the entire ordeal. Either way, I am always sore for 4 hrs or more afterwards.

            It's like being a virgin over and over, but with IC as a side effect...... not fun.

            Dx'd IC : 9/2010 Dx'd PFD : 4/2012

            Currently on:
            *Back on Elmiron [100mg] + *Elmiron/Bicarb/Lido INSTILLS 2x weekly----*Nortrel Birth control--*MagOx400--*Nitrofurantoin (1 after intercourse to avoid UTI's)--*Prelief--*Prosed--*Clonizapem--*Flexeril 10mg--*Zyrtec
            *PT for IC&PFD - Both hands on/all-up-in-there approach, and the breathing techniques/stretching approach--- helpful, but difficult to continue at home and make time in daily life

            Didn't work:
            *Nexium ,*Sanctura , *Enablex ,*Atarax ,*Allegra,*Arginine
            *Elavil (2 pills and I passed out, cold on the floor....)
            *Hydrodistention - Done by the best Dr, but did not prove to relieve any pain over long term at all
            *Gabapentin (DANGER - Caused suicidal thoughts, inconsolable crying & erratic behavior when mixed with Clonazepam & Flexeril)

            Hair loss/thinning/breakage Elmiron 300mg daily caused to my hair.... it is NOT a slight side effect

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            • #21
              oh man

              I hear you featherbullet....im the same way....I want to say astroglide contributed to my last flare up last time but I can't be too sure. But I believe they can contribute to flare ups.

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