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So I was diagnosed with IC I guess mild, but after reading I dont really think I have it. When I pee, it just hurts the external area around the clitoris, and the labia, all of that skin. It is VERY tender to touch, and I HATE wiping, actually I DREAD it. But I dont really have urgency and I dont burn that much, maybe once in a while. But I mainly dread wiping after I pee, and even after I pee the skin and stuff is just tender and I can feel it. Also on the top of my vagina on the outer skin underneath of my stomach itches sometimes. My doctor has put me on elmiron, and this is my 4th day, I guess I will see if this will go away. I mean it kinda just started one day last october. What is vulvodynia and does it go away???And does it sound like this is what I have or IC?? I take hot bathes because it soothes the skin around my labia and clitoris, but my main thing is wiping. It hurts SO BAD. I dont even want to touch it, and once I am done wiping it feels like I need to continue like something is not taken care of. Its weird, anyone have any insight?
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It does sound like vulvodynia, but I'm not a doctor. Vulvodynia is an unexplained tenderness, itching, or general pain in the genital area -- kind of like what you have. You might want to do an Internet search on "vulvodynia" and find some information on it to take with you to your next doctor's appointment.****
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. -
try just patting the are dry after you urinate. Ive also used vitamin E, only the Vitamin E in the soft gels, just poke a hole in the capsule and apply to the area. I also would use a squirt bottle to rinse the area after urinating (the sell one in the IC store on this website) certain foods can irritate it to if they are high in oxalates, like spinach and chocolate.
Im taking neurontin now and it helps a lil bit.
have you been evaluated for pelvic floor dysfunction, this can cause pain to that are a too.
hang in there.
Lyme disease diagnosed 11/05
vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
IC diagnosed with hydro/cysto- may 17, 2006
Over growth of lactobicilli found 8/07 treating with doxy.
Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:
8/22/07- was able to get my first speculum exam, with pap
Strep D found in bladder with United medical labs May 2006
2 strains of strep in stool culture 9/06
high Strep ASO titre found 10/06
NEW MED
Capsasin cream-once a day for 20min,
BUt wont lie it does burn
About to start valium supositories for PFD
Trigger point injections- oct 07
Current meds:
Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
Zanaflex 2mg
IC and low oxalate diet, no sugar diet
Xanax for appointments to help relax me since they cause so much pain
Started PT 3/07, PT has really helped me in ways I never knew that it would
Meds ive tried
Lyrica
Klonopin
Singulair
Claritin
Pyridium
Soma- can barely tolerate half a pill
Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
Estradiol cream
Urelle- caused worse bladder spasm and retention
Various antibiotics for lyme which caused yeast and made the IC and VV worse
waiting for the next chronic illness to pop up
"Did you know?
Every 15 seconds,
a person is
diagnosed with
interstitial cystitis."
Source: J. Dimitrakov, MDComment
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I used the squirt bottle for months when I was hurting and then just patted dry the area with a cotton towel. It took awhile, but it did help. You don't even need a special bottle - I used a water bottle with one of the tops that you pull up to open and then push down to close. I just filled it with warm water each time I urinated - which is quite often. Patting dry instead of wiping helps to keep down the irritation. I also used Vagisil - which burned at first, but then proved to be very healing.
I hope you can get some relief.
MaggieComment
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I use the bottle they seel here in teh IC shop, it is very cheap ($2)
I like it better than a regular bottle b/c the water sprays out better and I think it is more effective.
I don't wipe, I pat gently with soft toilet paper and then blow dry on cool. Of course all that protocol is only at home, when I use the restroon at work or somewhere else I don't rinse with water or blow dry!
How do you guys do when you are not at home, do you carry your bottle? I'm curious.
To me it also looks like the first post is vulvodynia.
I have it since Novemeber last year. I take Elavil and it helps some.. but I constantly have the feeling of a yeast infection, itchiness and soreness. I have yeast overgrowth but with VV the itchiness and all is magnified.Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
UTIs since mid 2004
Recurrent yeast infections since mid 2005
IC dx 3/2006
V V dx 12/2006
Other conditions: IBS, allergies, dry eyes.
Current IC medications:
Elavil (since 12/06) 10 mg;
Cysta Q (since 5/07)
Rephresh acid jel every 3 days
D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
Probiotics Femdophilus or other brands
Gy-Na-Tren for yeast infections (started using it as needed since 2010)
Other Rx:Omeprazole 20mg; benadryl as needed, Restasis
Past Meds and why I stopped them:
Elmiron: March to September 2006: headaches
Lyrica:2 weeks in 2006: headaches
Cystoprotek: from Jan to April 2007: nausea
Femcon Fe (2/07 to 10/07):caused spotting/bleeding
BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.
"Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"Comment
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I have a little 4-ounce bottle I got at a candy-making store, and I keep it in my purse. If I'm going to a place where I won't be able to discreetly fill it with water, I'll do that ahead of time and just make sure the cap is on securely. Otherwise, I just keep one in my purse (and one in the upstairs bathroom, the downstairs bathroom, the bathroom at work....!)Comment
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Thanks Ping pong! yeah I'll get a small bottle too. I spent most of the day at work anyway so it'll be worth it. I didn't think about keeping it filled out with water. That's a great idea. I will also start taking my own toilet paper with me. Ithink for V V is a must. It'll be a lot of work... but some toilet papers in public restrooms are rough.
We have to consider ourselves lucky though, in some poor countries, people use newspapers sheets to wipe or worse:corn cobs...sad but true.Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
UTIs since mid 2004
Recurrent yeast infections since mid 2005
IC dx 3/2006
V V dx 12/2006
Other conditions: IBS, allergies, dry eyes.
Current IC medications:
Elavil (since 12/06) 10 mg;
Cysta Q (since 5/07)
Rephresh acid jel every 3 days
D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
Probiotics Femdophilus or other brands
Gy-Na-Tren for yeast infections (started using it as needed since 2010)
Other Rx:Omeprazole 20mg; benadryl as needed, Restasis
Past Meds and why I stopped them:
Elmiron: March to September 2006: headaches
Lyrica:2 weeks in 2006: headaches
Cystoprotek: from Jan to April 2007: nausea
Femcon Fe (2/07 to 10/07):caused spotting/bleeding
BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.
"Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"Comment
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Elavil
My vulvar specialist recommends Elavil which seems to calm the nerve endings and stop the inflammation.
Sammi
Sammi
Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
Diagnosis: IC, PFD (both in remission)Comment
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