Re: I don't know what is wrong with me - looking for opinions...

[Guest guest]

I am new to this group - I have been hoping to read what is wrong with me, but I haven't seen it yet.

I have Interstitial Cystitis, and I give myself bladder irrigations (Elmiron, lidocaine, bariostatic water) every day with a catheter, sometimes more than once a day. So I am very familiar with "feeling" around in that area. So far, my bladder has been my only problem - until the past 3-4 months.

Lately the "lips" around my vagina have been very swollen - somedays more than others. They also have little "bumps" on them, inside and out. These bumps are red and hard to see, but they itch. I also have little pea sized bumps inside of the lips. In other words, I can hold one lip between two fingers and feel the lump between my fingers. As I roll it around it hurts. I tried to squeeze it between my fingers hoping it might "bust", but it didn't, it just hurt really bad!! I itch really bad all over my pubic area. I use Calmoseptine (similar to Desitin). It is cooling and very soothing. I use this to keep the urine away from my skin, because along with my interstitial cystitis I also have stress incontinence.

I hurt really bad the day after sex. The whole area around my vagina gets red and irritated and swollen. It goes down after a day or so though. My husband and I have been married for 25 years and I have never had this problem until now.

I do not have health insurance, so I try really hard to not go to the doctor. I may have to go see my Gyno with this though if nobody has any ideas. I have had TONS of yeast infections in the past, and I don't feel like this is yeast.

Thank you in advance for any help that you can give me!

Kiesha

RE: question

Carolyn, you are right about PT not helping. PT works when the pain is muscular. And if it is true PN, PT usually does aggravate the condition – it did in my case, and I know of a few others.

nne

From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Carolyn52192 (AT) aol (DOT) comSent: Tuesday, April 22, 2008 2:50 PMTo: happypelvis ; VulvarDisorders Subject: question

I was reading some information on different meds for pain and this one paragraph stood out to me

The real star of the antidepressant group is duuloxetine (Cymbalta) which was developed for neuropathy pain. It really takes away a certain part of IC pain, usually the unpleasant burning, ground glass sensations in the pelvis. This type of pain is usually due to some kind of dysfunction in nerve cells and is termed neuropathic pain. Cymbalta really seems to help a lot with that type of pain.

reading that last paragraph, I wonder, if it is truly dysfunction in the nerve cells- how does pt help that? I have to think pt probably does work in certain instances, maybe for tight pelvic muscles, but if it is something dysfunctional within the nerve itself, I would think that pt would just aggravate that kind of condition? Am I wrong? And how can the doctor tell that? does the emg just test the pudendal nerve?

C

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

You may have LS or Vulvodynia/Vestibulitis or both– do you have

a doctor that really knows about vulvar conditions? The itching is a big clue

that it might be LS. Yahoo also has an LS group that has a wonderful group of

women with very helpful suggestions. Most GYNS don’t (can’t) diagnose these

conditions correctly, and I don’t want you to waste your money if you don’t

have insurance. Some of these problems happen after menopause, who knows why - I

certainly didn’t and I have been married a long time also.

In the permanent files, Dee has a document on helpful hints when

everything in that area hurts. It really is very helpful.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Kiesha Crosby

Sent: Tuesday, April 22, 2008 10:13 PM

To: VulvarDisorders

Subject: Re: I don't know what is wrong with me - looking for

opinions...

I

am new to this group - I have been hoping to read what is wrong with me, but I

haven't seen it yet.

I

have Interstitial Cystitis, and I give myself bladder irrigations

(Elmiron, lidocaine, bariostatic water) every day with a catheter, sometimes

more than once a day. So I am very familiar with " feeling "

around in that area. So far, my bladder has been my only problem - until

the past 3-4 months.

Lately

the " lips " around my vagina have been very swollen - somedays more

than others. They also have little " bumps " on them, inside and

out. These bumps are red and hard to see, but they itch. I also

have little pea sized bumps inside of the lips. In other words, I can

hold one lip between two fingers and feel the lump between my fingers. As

I roll it around it hurts. I tried to squeeze it between my fingers

hoping it might " bust " , but it didn't, it just hurt really bad!!

I itch really bad all over my pubic area. I use Calmoseptine (similar to

Desitin). It is cooling and very soothing. I use this to keep the

urine away from my skin, because along with my interstitial cystitis I also

have stress incontinence.

I

hurt really bad the day after sex. The whole area around my vagina gets

red and irritated and swollen. It goes down after a day or so

though. My husband and I have been married for 25 years and I have never

had this problem until now.

I

do not have health insurance, so I try really hard to not go to the

doctor. I may have to go see my Gyno with this though if nobody has any

ideas. I have had TONS of yeast infections in the past, and I don't feel

like this is yeast.

Thank

you in advance for any help that you can give me!

Kiesha

-----

Original Message -----

From: millburytimes

To: VulvarDisorders

Sent: Tuesday, April 22,

2008 5:23 PM

Subject: RE: question

Carolyn,

you are right about PT not helping. PT works when the pain is muscular. And if

it is true PN, PT usually does aggravate the condition – it did in my case, and

I know of a few others.

nne

From: VulvarDisorders

[mailto:VulvarDisorders ] On Behalf Of Carolyn52192@...

Sent: Tuesday, April 22, 2008 2:50 PM

To: happypelvis ; VulvarDisorders

Subject: question

I was reading some information on

different meds for pain and this one paragraph stood out to me

The real star of the antidepressant group

is duuloxetine (Cymbalta) which was developed for neuropathy pain. It really

takes away a certain part of IC pain, usually the unpleasant burning, ground

glass sensations in the pelvis. This type of pain is usually due to some kind

of dysfunction in nerve cells and is termed neuropathic pain. Cymbalta really

seems to help a lot with that type of pain.

reading that last paragraph, I wonder, if

it is truly dysfunction in the nerve cells- how does pt help that? I have

to think pt probably does work in certain instances, maybe for tight pelvic

muscles, but if it is something dysfunctional within the nerve itself, I would

think that pt would just aggravate that kind of condition? Am I

wrong? And how can the doctor tell that? does the emg just test the

pudendal nerve?

C

Need a new ride? Check out the largest

site for U.S. used car listings at AOL Autos.

[Guest guest]

Hi there, the 'pea sized' bumps in your skin make me think of cysts. I had cysts once along with a bacterial infection, and it sounds similar to what you're describing. If they are cysts they will probably get worse for 1-2 weeks and then either pop (I know, gross), or just start to go away on their own.If your gynecologist isn't helping, you might want to go to a dermatologist. A dermatologist will be able to look at your skin and help you with that condition. nicoleTo: VulvarDisorders From: abccrosby@...Date: Tue, 22 Apr 2008 22:13:10 -0400Subject: Re: I don't know what is wrong with me - looking for opinions...

I am new to this group - I have been hoping to read what is wrong with me, but I haven't seen it yet.

I have Interstitial Cystitis, and I give myself bladder irrigations (Elmiron, lidocaine, bariostatic water) every day with a catheter, sometimes more than once a day. So I am very familiar with "feeling" around in that area. So far, my bladder has been my only problem - until the past 3-4 months.

Lately the "lips" around my vagina have been very swollen - somedays more than others. They also have little "bumps" on them, inside and out. These bumps are red and hard to see, but they itch. I also have little pea sized bumps inside of the lips. In other words, I can hold one lip between two fingers and feel the lump between my fingers. As I roll it around it hurts. I tried to squeeze it between my fingers hoping it might "bust", but it didn't, it just hurt really bad!! I itch really bad all over my pubic area. I use Calmoseptine (similar to Desitin). It is cooling and very soothing. I use this to keep the urine away from my skin, because along with my interstitial cystitis I also have stress incontinence.

I hurt really bad the day after sex. The whole area around my vagina gets red and irritated and swollen. It goes down after a day or so though. My husband and I have been married for 25 years and I have never had this problem until now.

I do not have health insurance, so I try really hard to not go to the doctor. I may have to go see my Gyno with this though if nobody has any ideas. I have had TONS of yeast infections in the past, and I don't feel like this is yeast.

Thank you in advance for any help that you can give me!

Kiesha

RE: question

Carolyn, you are right about PT not helping. PT works when the pain is muscular. And if it is true PN, PT usually does aggravate the condition – it did in my case, and I know of a few others.

nne

From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Carolyn52192 (AT) aol (DOT) comSent: Tuesday, April 22, 2008 2:50 PMTo: happypelvis ; VulvarDisorders Subject: question

I was reading some information on different meds for pain and this one paragraph stood out to me

The real star of the antidepressant group is duuloxetine (Cymbalta) which was developed for neuropathy pain. It really takes away a certain part of IC pain, usually the unpleasant burning, ground glass sensations in the pelvis. This type of pain is usually due to some kind of dysfunction in nerve cells and is termed neuropathic pain. Cymbalta really seems to help a lot with that type of pain.

reading that last paragraph, I wonder, if it is truly dysfunction in the nerve cells- how does pt help that? I have to think pt probably does work in certain instances, maybe for tight pelvic muscles, but if it is something dysfunctional within the nerve itself, I would think that pt would just aggravate that kind of condition? Am I wrong? And how can the doctor tell that? does the emg just test the pudendal nerve?

C

Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

Back to work after baby– how do you know when you’re ready?

[Guest guest]

Hi Kiesha,

Welcome. I also have IC. What concerned me most about your post was that you use a catheter every day. I switched urologists because every time I had an appointment he would take my urine sample by catheter, and that always seemed to make everything worse. My new urologist does not use that method, he says every time you use a catheter you are allowing more bacteria to enter your bladder (no matter how careful the procedure).

My IC is now under control - I take Elmiron (like you), Librax, Macrobid and Oxytrol Patches.

I also, have VV, lichen slerosis, and lichen planus. I control the itching (which was unbearable) with triamcinolone ointment.

I hope you find some answers here.

in Michigan

[Guest guest]

Hi Kiesha, I wonder if maybe you have developed contact dermatitis on the vulva due to the meds you use for the bladder. Just a thought. Maybe a dermatologist would be able to help you. Some of them specialize in vulvar conditions, but many treat genital skin conditions. I almost think I'd rather see one of them then a gyn. Most of the gyns I've been to have been pretty crappy! Hang in there.... Hugs, Chelle PS - An oral antihistamine could help with the burning until you find out what is the cause. I've used antihistamines off and on for IC and Vulvar pain over the years.