Burning between urethra & clitoris-IC symtom?

[bunnykinb]

I thought my main burning was from my urethra, but it isn't. It is in the area between the urethra and clitoris. I think that is the vulva area. Do any of you have this as an IC symptom? I have already been checked by one gyno for VV but she said I didn't have that. I was given Premarin just in case, but that didn't help either. I had to sit on ice packs today.

Any opinion?

Thanks for listening.

[izazen]

Perhaps you have highly acidic urine which burns the area. Does it hurt when you "go?"

When I have that I pour room temperature water over the area as I urinate which mitigates the acid. Also, I put small amounts of baking soda in my drinking water which reduces the acid.

[leelee88]

Bunny, I use to get this all the time.. That's when I uped my water intake and would take tums when I would start burning.. The baking soda is a good idea to.. I always noticed I burned more from the foods I ate. Are you watching what you eat?

Anything with acid in it makes me burn, and Mustard or anything with Vinegar.
I have also been watching my sugar intake.. That causes me some problems also with itching and burning.

If you do not have Lidocaine gel, I would call and ask for a script. This will help protect the area that is burning and also relieves the burning..
I hope this helps.. If you need anything please just let me know..(((hugs))

[bunnykinb]

Thanks for every reply. I do appreciate it so very much and wish someone with IC could just give me a hug and say it will all get better. The only time it doesn't burn is when I use the restroom. All other times burn.

So is this location of burning an IC symptom? I had to take Vicadin yesterday and up the Tofranil to 20mg. I do watch what I eat. I never have salad dressing, I eat my food as plain as possible. I do love sweets though. Maybe it is the sugar? I need to buy some Tums because Baking Soda just tastes so nasty. I feel almost as bad as my July 4th episode. I am very sleepy today. My husband asked how come I didn't go in yesterday to work or today as well. I only work 16 hours but only made it in on Wednesday. Gosh, I hate myself.

[leelee88]

Bunny, Another thought.. Are you drinking filtered water? I had to start drinking filtered water or spring water..

[Want2BPainFree]

Before being diagnosed with IC, I had constant vulvar pain/burning that started at the clitoris and went all the way back to the anus and down my legs some days.

Now that I have done the IC diet and take Elmiron, most of my days are pain free. When I eat something I shouldn't by accident or not knowing, I always burn. The location varies, but it usually starts around the vaginal opening/urethra area, and will spread out further kind of in a circular area.

[bunnykinb]

Well, I am glad to hear that my pain isn't just me. So, you think my type of pain is IC?

I do drink only spring water. I never drink tap water since who knows when because our drinking water is yucking. I have tried to up my water intake. I already pee every 45 minutes. Also, about a month ago, I was almost pain free for 3 weeks, then after my period 2 weeks ago, the burning started up again. I was worried about gaining weight while on Elavil, but right now, I am watching what I eat more carely and have lost weight. A little too much.

[bunnykinb]

What am I doing wrong? I watch what I eat and drink. I have been so comfortable.

[Want2BPainFree]

Unfortunately, there is no way to pinpoint this disease exactly. What flares me, may not flare you. Do you use soap when you wash? What kind of detergent do you use? Do you use tampons? Do you use fabric softener? Do you wear jeans alot? I have found all of those things make my vulvar symptoms worse.

[dverba]

I have the same pain. I am sorry your husband does not understand why you did not go to work. If his penis burned 24/7 he would be in the er after 10 minutes, he probably couldn't take it. My husband does the same things sometimes. My dr called in a numbing medicine I can put right on the areas that hurt. Have you tried that?

[bunnykinb]

I meant to write that I was so UNCOMFORTABLE. Even the pyridium isn't helping. I already applied lidocaine gel 2% and nothing. Yikes. I am working part day tomorrow then I am off the remainder of the week. I took a vicadin last night to cut some of the pain. I have been rinsing with water too. I pat myself dry. I haven't worn jeans in years.

[Tracie]

I do not have IC, and my vagina is uncomfortable almost everyday. My gyno perscribed me a cream. Its called Zazole. its for yeast and it works. After I pee or after I shower I just put some all over down there and in a few minutes I am pain free. I use to rely on ice packs. It really works for me. I hope you find something soon for your relief. Oh yeah, my gyno also said to never cross your legs. This has been very hard for me to stop!

[bunnykinb]

Were you precribed the cream for a yeast or was it just for the burning? I was given Premarin to put on the vulva area. It didn't help. In June 2007, the gyno checked me and I didn't have any yeast or VV or anything else. In Nov. 2007, I went to another gyno who did a pelvic exam to check on my cysts but didn't see anything either.

What type of soap do you use for cleansing? I use Johnson's Soothing Naturals, but I think I need something different.

[glassd18]

This isn't much, but I use Vagiguard (sp) for sensitive skin. It has benzocaine in it. You can find it near the Monistat products for yeast infections although that's not what this product is for. It is for feminine itching and burning. I spread it in and around my urethra right down to the netherlands, and it helps stop the itching and burning I sometimes get. Since I've been on hormone replacement therapy (Vivelle Dot .75mg/Provera 10 days every three months) I have not had as much urethral burning. Sometimes it can be a hormonal imbalance. Also make sure you are not washing your undies in perfumed soap!!! You can also soak your nether regions in baking soda called a sitz bath. Just add baking soda to the water and sit in it. I hope you find relief soon because it really is incredibly uncomfortable to have urethral burning.

[glassd18]

Oh yes and I just bought some Monistat vaginal wipes, and that has helped too!!

[bunnykinb]

Thanks for the info. I have used Vagisal cream but it didn't help the burning. I do wash the undies in perfumed laundry detergent but I always use an unscented panty liner. Does it make a difference even though the undies aren't touching that area?

[glassd18]

Vagiguard and Vagisil are two different products so I don't know if the Vagisil has benzocaine (topical anesthetic) in it, but the vagiguard does. I would ditch the panty liners for a while too because I always itch more when I wear them. They don't let you breathe down there very well. Plain cotton gussets without perfumy laundry detergent is the way to go when your having downstair problems. I've had quite a few yeast infections etc... and those were always triggers for itching and burning for me. I would give it a try and see how you do.

[Tracie]

Tide Free is all I use for laundry and Dove soap in the shower. When I first moved out of my parents house and was buying April Fresh and Mountain Spring soap I was always red and burning and itching. Even some shampoos bother me. I like baby shampoo.

Bunny- The Zazole cream was perscribed just for my external pain but I can use it for yeast if I have a infection. Gyno put 12 refills on that cream for me. God bless him!

[bunnykinb]

I wear panty liners because when I take Urelle, it makes my urine blue. Since I am always burning, I have been taking it more often. I don't want my undies turning blue.

[glassd18]

Ah, I've posted this before, but I wear black undies with black gussets most of the time. They do sell black undies with white gussets though so then you'd still have the same problem.

[bunnykinb]

I'll have to check around for cotton black undies. Gussets? I have never heard of that word. I learned something new.

Thanks.

[glassd18]

Here ya go bunnykinb. Follow the link to cotton black undies:

http://www.hanes.com/Hanes/Products/Women-Hanes/Women_ShopByCategory-Hanes/Women_Panties-Hanes/Women_Panties_5for20-Hanes/20208.aspx

There are other styles available to. Just search the site. You can find them at Walmart too.

[bunnykinb]

Oh, and I like Hanes too.

thanks

[sami4]

Burning, tingling, shooting pain is typical nerve ending pain. If you dont have a yeast infection or suffer from chronic yeast which can damage perineal nerves; then look to pelvic floor disorder.
PFD manifests as urethral pain, clitoral pain, vulvar redness and pain, spasming pain which you probably think is from your bladder, but isnt.
You may or may not have pain with sex.
The treatment is physical therapy with internal vaginal manipulation. It works, is effective and helps you determine which is bladder and which is PFD. Most of the problem is PFD and not bladder. You can have a lot of referred pain with PFD which is why most of us blame our bladder.
This is one of the most overlooked diagnosis in persons with IC.

[BBB]

Sami,
I loved your post. It is so cool because that has always been my belief and I have talked to several people today sharing it. Great to see you getting the word out!

[bunnykinb]

Sammi and all,

I saw the urologist today and had a heparin mix with lidocaine instill today. I asked him if clitorial burning or labia burning was part of an IC symptom and he said it seems more of a gyno issue. I have seen two gynos plus my primary care doctor about this and nothing can be found.

I was okay before the instill. After I was cathed, upon my first pee after the instill, my urethral opening burned for just a bit. Then, my clitorius started burning again. I think it is a nerve issue and not a gyno. My vagina doesn't burn nor is it red or dry.

Who would I ask for a referral to a Pelvic Floor Specialist? My primary care doctor or the uro?

Thanks.

[sami4]

Hey Bunny:
Answered your private post on the above matter. Short answer for the board: Tell your Gyno you suspect PFD and ask if they can either refer you to a PFD specialist or Vulvar specialist. Some Gyno's are pretty sharp with PFD and others are not. Sounds like the procedure caused the pelvic floor to act up and spasm. Burning pain is always nerve pain and can and does refer to the urethra, bladder, back, leg and whole area.

[bunnykinb]

I don't think the uro is knowledgable on PFD because when I had mentioned the burning location, he said sounds like a gyno issue. And, that maybe I had vaginal dryness. However, my vagina is not dry and I do not have any burning there. It is strange that after having the first pee following the catheter, I get initial burning in the urethra, then it stops and the burning is then at my labia and near the clitoris. I get opinions and suggestions from here to ask my doctors since nobody can pinpoint anything yet.

When I put some lidocaine in the urethra, the burning in the clitoris area subsides. I just don't understand.

Thanks.:confused:

[sami4]

See a specialist, your symptoms are classical pelvic floor and vulvar problems. The lidocaine worked because it dulled the nerve endings.

[bunnykinb]

I had told the uro about my vulva burning. He said it seem more like a gyno issue. But, I was fine when I went into the uro's office on Tuesday. After being cathed for heparin and lidocaine, I was able to hold it in for 2 hours before peeing. After peeing the first time, my urethra hurt for just a bit, then the clitoris and outer labia started up burning like crazy. When I see him next week, I'll ask him about the PFD. I also have a gyno appointment next Friday and will ask him about PFD and VV.

The last time the gyno called me to tell me my transvaginal exam on my fibroid and cysts were fine, he said maybe the burning was neurological. I am not crazy. My pain is very real.

I have been dealing with this burning for 4 years now. :confused:

[bunnykinb]

Sorry, I seemed to have repeated myself twice. I am just overloaded with pain and can't think very well.

Sammi,

How did you become so knowledgable? I hope Pacificare HMO has a pelvic floor specialist.

[sami4]

The Gyno told you he thought the pain was neurological or coming from some nerve impingements or problems--just what we have been saying. Pelvic Floor disorder is nerve impingement or neurological. I am glad your cysts and fibroids are fine but this is pelvic floor related, not fibroid or cyst related unless they are pushing on nerves which you would need the evaluation of a specialist or a Gyno who understands this to determine.
Your doctor didnt say it was in your head, he said it was in the nerves.
Sammi

[bunnykinb]

Oh, ok, I get it. Well, hopefully, I'll get some help. I have been dealing with this burning for 4 years now. What if I really didn't need all those instills?

Today, I feel much better, but I still have my headache. I am thinking about going on continuous birth control pills.