vestibulitis vs IC?

[kimmi]

So for the longest time I have been thinking that I have vestibulitis....now a new doc is toying with the idea of IC. Basically I have pain on entry but if given the typical qtip test, I have burning pain in the whole area (from clitoris to perinium-as well as the urethra). I was under the impression that this was vestibulitis. When I look up IC I see symptoms of frequency and urgency (none of which I have). I occasionally have burning after urination but only if I am in a really bad pain flare. I have no abdominal pain, no blood, no pain during urination, etc
Can someone give me more info on IC symptom wise since I know it is different in all people? I am really really confused now!

[kimmi]

i should also probably add that when I was having intercourse, I would burn like crazy for 30 minutes or more afterwards but intervaginally. Sex is virtually impossible as is tampon use, so I cant tell you if the burning after sex is still there.

[kazi]

Hi Kimmi??just wondering is the pain that you get a raw burning feeling at the entry and a little bit deeper inside the vagina like about midway??Because this is the same feeling that i get...??

[poetgirl]

I'm no medical doctor, but I have vestibulitis and IC, and although you can get referred pain from one area to another (because they are essentially the same tissue) it is possible to have one and not the other, or both, as in my case. It's very frustrating to determine the root causes and find treatment that works.

Since you tested positive on the q-tip test, then probably your primary problem is vestibulitis, and that can cause some burning after urination if the area is inflamed. I would suggest trying to follow a low oxalate diet (do a Google search on vulvar vestibulitis and low oxalate diet and you will find some links to good information) and take calcium citrate. Many women with vestibulitis are helped by doing this, because the oxalates in our urine cause the inflammation and burning you're experiencing in the vulvar area. You may also want to ask your doctor for a low dosage (25 mg) of Elavil, which is tricyclic antidepressant that at low levels blocks the pain receptors and can offer relief. My doctor also prescribed a betamethasone valerate gel for me to apply if I was feeling really raw. It cannot be used more than a few days since it's cortisone steroid-based, but it does help with inflammation.

There are also some things you can do before and after sex to reduce that awful burning. If you can take over-the-counter pain relievers like Aleve or Advil, take one before having sex. Urinate and rinse with cool water before sex. Use plenty of lubrication (and not ones with anything tingly or "stimulating") and take your time with insertion. Some positions are more comfortable than others -- experiment to see which ones work best for you. After sex, be sure to urinate and rinse with cool water again, or apply a cool wet rag or an ice pack wrapped in a paper towel against the vulva for 10 minutes or so.

Hope you start feeling better soon. Feel free to ask more questions if you need to.

[kimmi]

thanks for the info poetgirl. My doc started me on hormones so I need to give it 3 months. I have tried Elavil in the past and it did nothing. My doc did some hormone tests and I have very low levels across the board, so she thinks that by raising them it will help with the pain. I will keep you posted on progress.
And I dont have burning after sex, but do have urethra burning after touch (like my exam at the doc).

Kazi, yes that is where my pain is located and only hurts on touch. But it is a burning/raw feeling.