No announcement yet.

Vestibulitis, Vulvodynia, and Urethral Pain

  • Filter
  • Time
  • Show
Clear All
new posts

  • Vestibulitis, Vulvodynia, and Urethral Pain

    I was in another topic and came across someone who was talking about Almond Milk substantially benefitting her urethral pain and IC. I posted the below response, but then realized it should also be posted under this topic (the original topic was "success stories" and some people don't want to read about those when they're in pain...I don't anyway). Anyway, here's some info that really helped my pain to the point where I am have a regular and wonderful sex life again...after 10 years.

    I have several additional suggestions for those with urethral pain, which was worse than my IC pain and totally linked to my vulvodynia (when one flared, the other did too, and they were never not flared for the longest time).

    I regularly take Elmiron, Atarax, Wellbutrin, and the pill (being on the pill constantly means no periods which means fewer flares from everything else). I also take an herbal remedy created by my accupuncturist designed specifically for IC. These greatly helped the IC, but the vulvodynia and urethra were untouchable.

    I go to an extremely progressive and wonderful MD office in Philadelphia, and they will literally try anything to improve your pain. This office has an incredible Phd working for them who is really into working with you on pain.

    For a while, I was applying capsacin (the stuff in arthritis cream) directly onto the's unbelievably painful and minimally effective for me but it works for some people. Next we tried a ketamine mix applied externally(ketamine is a powerful animal tranquillizer)...again, minimally effective and NONE of this was helping the urethra, but until we got the vulvodynia under control, I didn't even REALIZE how the urethra was actually much worse and even more problematic--amazing!

    Next, we tried traumeel (a homeopathic remedy), which we were literally injecting into the glands (for the vulvadynia) and then the urethral neck (for the urethral pain) This was weekly for six treatments. Yet another indescribable sensation, but it worked pretty well and I found that I would have a week or two or three sometimes when the pain would abate mostly or totally.

    Glorious but because I'm stubborn and don't accept that I have to be in pain at all, I kept pushing for "the latest". We were talking about it one day and I asked why we couldn't just insert some of the traumeel right into the urethra. We tried a few versions of this, and she's now dispensing several different options: a traumeel/lidocaine "jet" that you put right into the urethra...sounds bad but it really isn't and OH MY GOD so much better--it's like a syringe without the needle); a traumeel suppository that you insert vaginally and let it "soak in" overnight; and once you're in maintenance mode, a traumeel/olive oil solution that you swab on once or twice a day to keep you good.

    That all worked beautifully, and patients are having much success with this method.

    However, it all became a little too high maintenance, so I spoke to my accupuncturist about it. I'll tell you, I don't know what the hell she's doing to me but I am going months at a time, no more traumeel at all, and barely any urethral or vulvodynia pain. I've been seeing her for years and never even thought to bring it up. Incidentally, she also has an IC herbal remedy that I credit with much improved IC.

    Good luck, and keep looking for what works for you. Something will.

    "One only need to look around to see that Darwin was an optimist" - myself

  • #2
    Hi Michele,

    Glad you are better. After trying vaious treatments - success Very encouraging! You certainly did not give up and accept the pain.

    I hear many people say herbal remedies can be a good thing. What's the name of the IC herbal remedy and is it available at the pharmacy or health food store??? Thanks, Tilly


    • #3
      hi mishelle. probably spelled it wrong ..sorry..HA..HA.. i would like to know how to get this herbal remedy also if you would please let us know..glad you are doing better..dcoplin
      darlene coplin


      • #4
        hi...go to and click on "IC". this accupuncturist is wonderful and i credit her with a lot of healing i've had. i'm so lucky to have found her...but the good news is, even if you aren't local to philly, she will mail IC products anywhere. i use the capsules, not the tea.

        good luck!

        "One only need to look around to see that Darwin was an optimist" - myself


        • #5
          do you use trameel ointment or gel?


          • #6
            I have a question for those who were diagnoised with vulvodynia. Can you have burning in the glands just below the urethrea, (Skene's glands), near the indented area (Hart's line)? The reason I ask, is my gyn told me that vulvodynia is only in the labia area. (the folds).

            I thought I might have "dysesthetic" vulvodynia, but I'm not sure. Upon examination, gyn thinks I have a urethral diverticulum. I wonder if I could have both, or if the symptoms are anything alike. BURNING about 1/2 inch into the tissues is the main symptom. No redness in area, but a slight swelling.


            • #7
              Michele,I am so happy to hear you are doing so well. It makes me feel so much more optimistic about myself. I would like to know more about how you were diagnosed with Vestibulitis, Vulvodynia, and Urethral Pain. I am trying to figure out what my problem is. I have little bladder pain with frequency, but my main pain is in the vaginal area. Almost nothing helps. It comes and go's (comes much more than it goes) and I can't seem to figure out what it is, and what is triggering it. I have a pain during intercourse, (but can tollerate it), pain during the day on and off depending on the day, (sometimes all day for days on end) and it is localized in the vaginal and urethral area. It is very hard to describe, but it is like a burning sensation on the labia and a soar type pain on what I think is the urethra. It is always sensitive to the touch. The pain in the urethra area is a constant soar type pain that I have almost all of the time, and have gotten a little used to having it there. I just want to have days where I feel normal again, and not in pain. Right now I am just thankful for the days where the pain is minimal. Do you have any advice on what this might be? I have only had it since I was diagnosed with IC, but none of the treatments seem to help that much, (Elmiron, Atarax and Elavil). How were you diagnosed with what you have separate from IC? Do you have any advice on what steps I should take to figuring this out?
              Completely confused,


              • #8
                katie, i have the same exact symptoms as you. i was diagnosed with vv by my ob/gyn and vulvodynia by one uro. it is mostly the vaginal area (inside of inner labia, urethra, vulva etc.) Most of the websites describe vulvodynia as dysparenia (pain with sex) but I mostly have a lot of urethral pain and burning of the vulva. I was also diagnosed with IC by another uro. I also have minimal bladder pain, just pressure, but do have the frequency/urgency. I can't seem to figure out what triggers it's driving me crazy..right now I am seeing physical therapist so we'll see what happens..I also have a uro appt. tomorrow bc another dr. suggested me using DMSO but I'm terrified bc of the pain I'm already in..I don't want to make it worse...please let me know if you hear of anything that may help us!


                • #9
                  Just a suggestion: try taking 1200mg of Calcium Citrate (Citracal is one brand) a day. I started doing that and the urethral/vulvar burning decreased significantly. In fact, when I forget to take it, I usually start feeling the burning return within 24 hours.

                  My gynecologist gave me a betamethasone valerate gel to apply to the vulvar area when it gets inflamed and that does help some too.

                  Treating vulvodynia is really tricky and I tried a bunch of remedies with no success until I started taking Elavil and the Citracal. Sometimes it will flare up some after sex but it's not nearly as bad as it used to be -- I might only have one day of minor discomfort, as opposed to a week of burning and shooting pain.

                  "You must be the change you want to see in the world." - Mahatma Gandhi

                  "The most important medicine is tender love and care" - Mother Teresa

                  Proud mother of Ahleia, born on April 9, 2007

                  Diagnosed with:
                  IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

                  Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

                  Health treatments/practices:
                  Kripalu yoga, Chiropractic, Massage therapy and Reiki


                  • #10
                    Thank you! I've been taking the Citracal but I'm going to up the dose. Is it possible to take too much calcium? I just remember my grandmother being diagnosed with osteoporosis but said she couldn't take the calcium bc she gets kidney stones. How much is too much? I also went to another uro yesterday who gave me elavil. I'm going to start asap. Do you have any side effects with the elavil? ugh, vulvodynia is so day i feel ok and the next (like right now) it burns so bad...thanks for the info. God bless you and I will keep you in my prayers.


                    • #11

                      I know how you feel about the vulvodynia. I have it too. One day won't be too bad, then the next day I have really bad burning and itching. I am taking the Citracal & Elavil also. I am on 100mg of Elavil per day. The side effects I noticed with Elavil are constipation, tiredness, and increased appetite. My doctor also recently started me on Estrace cream, but I haven't noticed any difference yet. Hang in there, hopefully we can find something that works for us.

                      Take care,


                      • #12
                        My uro gave me 10 mg. of Elavil to start...I asked about the estrace but he said it's controversial......i'm going to the ob/gyn next week and really hope he can prescribe some for me...i just don't undertand why they won't prescribe something that may help me! this week I was feeling ok and now the burning is's awful!!! i know it could be worse and pray for all of those who are in much worse shape then I am...hope you find some relief with the estrace..let me know if it helps..thanks!


                        • #13
                          the more i read these posts..the more i think i have this vulvodynia / vestibulitis.
                          i feel the urethral burning / stinging..
                          the vaginal burning and stinging..
                          sensitive to touch..even underwear..let alone sex ..even oral sex is kind of annoying too!
                          it feels like the insides of the vagina are being ripped or torn upon penetration at times too..and it changes..some days i feel hot , burning, irritated and the inner skin looks red and inflamed. i have already had two courses of vaginal for yeast for vaginosis..i do have a different smell down there..which i NEVER HAD...NEVER WAS ONE TO HAVE ANY STRONG SCENT BELOW.
                          and i am even becoming self conscious about it.
                          the gyn prescribed another antibiotic cream for this recurring bacterial vaginosis..
                          so..i will see what happens afterwards .

                          anyone else relate to this?


                          • #14
                            i hate to be so graphic.but i dont even want my boyfriends finger in me..
                            it hurts! anyone else have these symptoms?


                            • #15
                              also..the gyn gave me premarin cream but i have not used it because i lost one sister to breast cancer and the other one had it too.
                              so, i dont want to be taking any estrogens which could precipitate giving me any kind of cancer........since i already have a familial tendency to it.