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Go Back   Interstitial Cystitis Network Support Forum > Related Conditions to Interstitial Cystitis > Vulvodynia
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Old 05-06-2007, 04:40 AM   #1
Fletcher
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Join Date: Dec 2003
Location: southeastern us
Posts: 12
Help, Not yet diagnosed but sure I have it

Hi, Mine seems to be a yeast infection gone bad, with intense buring and itching for more than two months now. Urogyno prescribed 2 weeks of Clobetasol twice a day, then 2 weeks once a day, then reduce again. It seems to have helped some, but now she's added estradiol with lidocaine from a local compounding pharmacy. Slight relief from itching on this, the third day. I'm trying low oxalate diet but it's so hard to figure out. When I've had IC symptoms, the rigid diet for 2-3 months has brought it into remission twice over the last 10 years so I'm hoping for relief. I've now been referred to our pelvic pain clinic but may have to wait weeks to get in. Should I try to get my internist to put me on Elavil? I'm going to Japan for 2-1/2 weeks in about 10 days and am worried about the diet and general coping. A&D ointment on my chafed inner thighs made them sting so I'm using a tiny amount of Clobetasol there to see if it calms this new and related symptom down. I've never had chafing there and the skin doesn't look red or irritated so I'm assuming it's more of this. Benadryl takes the itching away at night but I can't take it and stay awake in the daytime. Any other suggestions. I'm desperate of course.
Fletcher
Age, 59
IC twice in 1997 and 2003, brought into control with diet
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Old 05-06-2007, 05:10 AM   #2
leelee88
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First of all have you been dg with a yeast infection? If you do not have a yeast infection it sounds like you have a full blown Vulvadynia flare..And I am no doctor but Elavil has helped me get my life back along with Cymbalta..I take 25mg of Elavil at night and 60mg of Cymabalta during the day..
Now if you do have a yeast infection I would recommend you get on some kind of probotic<sp? like Azo yeast it will help with the burning and itching, and if you have peridium that will help with any burning if you dont have periduim you can buy uristat over the counter and it works the same..Also keep that area that is irratated as dry as possible do not soak in a bath tub, this will make thins worse...I hope all this helps, take care and good luck.


(((((((((((hugs))))))))
ronda
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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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Old 05-06-2007, 05:38 AM   #3
mich2604
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Posts: 495
you could try putting some vitamin E on the area. Only use the liquid capsules, poke a hole in the gel cap so the vitamin E will come out, and apply it to the area that burns. It really helped me when my Vulvar pain was really bad. It also adds a barrier so urine doesnt burn it.

I think the vitamin E also helped the tissue to heal.

neurontin has helped me with the bladder and vulvar pain.


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

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, MD
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Old 05-06-2007, 07:44 AM   #4
Fletcher
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thanks -- what about diet, chafing?

I bought some vitamin e pills and will try one. Are you bothered by chafing? It's really distracting, though the skin doesn't look red or irritated. And are either of you using diet?
Fletcher
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Old 05-06-2007, 02:15 PM   #5
sami4
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Elavil

Elavil really helped me when I was recovering from a series of yeast infections which started the whole VV thing. Also if your vagina does not have enough estrogen you can have a VV flare also.
Almost anything burns the vulva when in a flare, but this is the first time I heard that A & D burned? My VV specialist also has them compound a elavil cream to soothe the nerve endings. VV is primarily a disease of severe nerve inflammation, and the Elavil seems to be good at calming these cranky nerves down.
Sammi
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Sammi

Meds: Elmiron-2-a day, Ativan 1/2 of 1 mg @ bedtime if needed. Estrogen 3.0 mg transdermal and 0.1 vaginal.
Diagnosis: IC, PFD (in remission),sleep apnea
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Old 05-06-2007, 04:16 PM   #6
icbop
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Elavil cream? Interesting. I hate the SE of regular elavil and can not tolerate it. A cream might work though. Does enough of it aborb into the bloodstream that you get the tricyclic side-effects?

Thanks!

Quote:
Originally Posted by sami4 View Post
Elavil really helped me when I was recovering from a series of yeast infections which started the whole VV thing. Also if your vagina does not have enough estrogen you can have a VV flare also.
Almost anything burns the vulva when in a flare, but this is the first time I heard that A & D burned? My VV specialist also has them compound a elavil cream to soothe the nerve endings. VV is primarily a disease of severe nerve inflammation, and the Elavil seems to be good at calming these cranky nerves down.
Sammi
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Old 05-06-2007, 05:45 PM   #7
tcsharon
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I take Norpramin, it's a tricyclic antidepressant, the same family as Elavil. When I was first diagnosed I was put on Elavil and I could hardly keep my eyes open it made me so sleepy. I didn't have that problem with Norpramin. Maybe it would help you. When I've had that burning from yeast or VV, kava (herb) helps me. My doctor said it's o.k. to take, it's only when you take it a couple times a day, everyday that it might cause problems. Estrogen can cause irritation, can't remember if you used a compounding pharm. Do you have The Vulvodynia Survival Guide by Howard I Glazer, Ph.D.? It's full of useful information.
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Old 05-07-2007, 03:32 PM   #8
Fletcher
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Location: southeastern us
Posts: 12
thanks

Hi, The vitamin e oil was soothing and I added some to my purse by putting some in a plastic soap dish with a hatpin to use if I needed help at work. Today was much better as I did not use the estradiol cream this morning. I think too much of it causes my clitoral itching. I'll use it tonight with the Clobetasol and Benadryl, which seemed to calm things down last night. I'm also working on the low oxalate diet, since diet put my IC in remission twice. I had a mild itching and chafing sensation about 4 hours after my lunch and think an oatmeal raisin bar, which turns out to contain soy and whole wheat, might have been the culprit. From what I've read the diet may not be related to oxalates as much as it is to allergies. We are leaving for 2-1/2 weeks in Japan in less than 2 weeks. Avoiding soy will be a challenge, but to feel somewhat normal is so good. I won't see the pelvic pain specialist until I get back most likely so will have to wait on a tricyclic until then. I tookPamelor before and it helped -- mostly with my depression. I have a whole new set of docs unfortunately, so I don't want to start without someone who knows the routine in charge and I don't think my internist is the one. I am gratified by all the messages. ICN helped me before and 10 years later it's still a real source of support and comfort in an incredibly difficult time.
Fletcher
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