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Does anyone else have this? It seems worse if I wear pants, the mainstay of my work and leisure wardrobe. It comes and goes as well and doesn't seem related to diet like the vulvar pain, but maybe it is.
Fletcher
Fletcher
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Sounds like you could have some PFD (Pelvic Floor Dysfuntion) going on...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.
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or vulvodynia, it often accompanies PFD
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Yes, I have gotten that too. Not everyday, but fairly often. My urologist sent me to a vulvar clinic thinking it was something like that. I now have an appt w/a urogyn on 7/16 for PFD too. He says that IC, VV & PFD have many overlapping symptoms. I could have 1 or all 3 he just isn't sure anymore.
DonaComment
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ooooh i get this too...isn't it strange?? i also have pfd so who knows...it could be that or the vulv...we just don't know anymore <sigh>. i don't know of anything to stop the sensation either. it doesn't come all the time and i can't make any connection when it occurs to something i did/ate differently!(Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).
Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).
I'd like to be on House, MD as a medical mystery.
Married to Craig, a saint amongst men...who puts up with me and my eccentricities...
Connor & Mommy by the tree:
Connor with Santa...so happy!
I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!
Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...
I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!
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My gynecologist and internist say it's nerve pain like my vulvar pain. The pressure of wearing pants is the worst. Shorts and skirts are okay. Sitting makes it worse. I'm hoping that as the Lamictal builds up it will help with this problem too.Comment
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