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Vestibulitis, Vulvodynia, and Urethral Pain

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  • #16
    You may not have an infection, and if you don't, those creams will only make your condition worse. I suggest reading up more on other possible options and ask your gynecologist to allow you to try them. My gynecologist was great about allowing me to try different treatment methods and eventually we hit on a combination that worked!

    Alicia, it is possible to get kidney stones from too much calcium, but only if you're predisposed to creating calcium stones (you can also form uric acid stones.) The best way to minimize that possibility is to drink an adequate amount of water every day and to avoid ingesting a lot of sodium.
    Namaste

    "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!

    Meds:
    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

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    • #17
      well..i did test positive for the yeast infection..and had all the symptoms..
      cottage cheese like discharge and the itching..
      and the vaginosis..i had researched online myself and it seemed i did have all of those symptoms too..
      this time i am not so sure ..it feels similar to the vaginosis again..
      what else can it be???

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      • #18
        Kmmk,
        I feel your pain! I too am going through this and am more lost and confused than ever. I can't even voice my frustration with this topic! I am almost certain that I have Vestibulitis or vv, and have been to more doctors than I can afford. I am 5 months pregnant now, and have been married for only a year. My poor husband! I hate that he has to go through this too. My symptoms began as pain with intercourse, but I could endure it if it was quick. I also have a 2 year old and ever since I had him the pain has increased so much that now I can't even think about sex (or even snuggling b/c that may lead to my husband wanting to have sex), and even sitting down hurts. When I have gyn exams the pain is so excrutiating that I'm jumping off the table. I can't take it anymore! I am sinking into a deep depression and I feel like none of these doctors or anyone cares or understands. I hate the fact that there is so little research on this and even more that there is not a definite cure! I wish there was some help out there. I'm tired of trying so many different things and only getting worse. Is there any hope????

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        • #19
          Oh yeah,
          another symptom I am just now getting is pain with urination. It almost feels like someone cutting me when I pee. Not sure exactly how to describe it. When I talk about the pain I'm having when sitting down, walking, whatever - it's kind of prickly, like needles or something and constant. Overall it just HURTS!

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          • #20
            Originally posted by kmmk
            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.
            There are things you can take that don't contain estrogen - estrovan is one and another is a cream that you get at the health food stores - you put it on your wrists and near your armpits where it will get into your system... I think it is progest cream - check with your doctor to get his/her opinion of these options to taking estrogen... Get well... and God Bless!
            ShePurzz

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            • #21
              Yeast and Urethral Pain

              I have noticed that when I get urethral pain and have taken Diflucan for mild yeast infection it stops the urethral pain. I am wondering if you can get yeast in the urethral and bladder cells? I think some of the red vulva, urethritis, is due to some subclinical yeast infection that eventually flares bad enough that you get treatment for it.
              My Gyno also told me that their are two infections a normal culture do not show that cause almost identical symptoms as IC: pressure, burning, frequency, urgency. They are called Mycoplasma, Ureaplasma and Urealyticum and require a special swab culture of the Urethra. I just had this and am very interested to see what comes back.
              Sammie

              Sammi

              Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
              Diagnosis: IC, PFD (both in remission)

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              • #22
                I only get vulvodynia and vulvar vestibulitis when I'm in a flare. During my last flare which lasted about eight months I suffered from these two conditions. I suffered enormously and only used cold water. The doctors I saw gave me nothing.

                Marsi4

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                • #23
                  Kmmk...sound like i have the very same symptoms as you...burning in the same areas..as well as the urethral burning sensation..wat kind of meds are you on at the momt??
                  Thought of the day! As we grow up, we learn that the one person that wasn't supposed to let u down probably will. U'll have ur heart broken probably more than once. And it's harder every time. U'll blame a new love for something an old one did. U'll cry cause time is passing too fast, u'll eventually lose someone u love. So take many pics. Laugh too much n love like u've neva been hurt cause every 60 secs ur upset is 1 min. Of happiness you'll never get back.

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                  • #24
                    Estrogen ring or cream

                    My doc told me not to take Estrogen creams, but gyno said there are two which do not stimulate the uterus, so am awaiting visit to see what he means. Does anyone know? I have to make do with clinics here living on an island out in the Pacific off the west coast of Canada, and where the docs are trained but leave!

                    When I was on HRT for 6 months, didn't have probs with soreness during sex, but now it has come back.

                    Thanks for help..

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                    • #25
                      I also have Vulvar Vestibulitis.

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                      • #26
                        michele Does diet make a big diffence in Vulva pain AND IC? What about hormones? Because I was on the Depo Provera Shot for 3 months and boy it has really done a number on my body. It also takes a other 2 months just to get out of my body. Because in Nov 2005 my OBGYN found IC. So she put me on a really strict diet for IC and I felt so much better in 1 month. But ever since this dumb shot my body has been going crazy. I also had Endo.

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                        • #27
                          I have also noticed around my period my IC and Vulva pain gets worse. So I am going to a new OBGYN today and ask them about a parcial hystercodomy. Because that at least save me from my periods. I have tried everything and I am so sick of triing.

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                          • #28
                            I am wondering if I have Vulvodynia too in addition to my IC. I keep having continual urethra pain but since reading this, my burning also feels like it is coming from the clitoris. I haven't had any sex for weeks and no touching at all in that area for over a year. This week, my burning has been really severe to the point that I am crying.

                            In 2004, I went to emergency in which the doctor did an exam and said that I had vaginosis and gave me Metro gel cream to insert for 5 days. The pain still continued. I followed up with my primary care doctor and she had given me an extra week of it. The pain subsided but later came back. By then I went to a urologist who did the cystoscopy/hydro and said I had IC. I asked about the pain for vaginitis or vaginosis and he said it wasn't his area. Later, I went to a gyno who said everything looked fine.

                            Antbiotic, Urelle and pyridium aren't helping. I am supposed to see a USC chief of urology who my primary care doctor was able to get approved through my HMO that doesn't even have this doctor on their list. This doctor is also familiar with some gyno. God, I hope he can help me. Dr. Stuart Boyd is supposed to be one of the best doctors. And, USC Norris Hospital is up there is status with UCLA.

                            I know this was a long one.
                            bunnykinb

                            6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                            tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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                            • #29
                              Do you find that being on a birth control that stops your peirod will help stop the pain increase with the vestibulitis and IC. I have been on the depo shot for the last six years and well havent had my peirod since. I do remeber when I used to get my peirods I would be in alot of pain but then I didnt know what was wrong with me. My uro has taken me off the depo to see what happens after my body gets back to its normal self again. I still have not started my peirod I was due for a shot about 2 wks ago. I have no idea when ill get my peirod agian but I do have a lot of cramps more then usual. And alot of those pains in the uretha area and I feel as if my vulva pain is getting worse. My sister was on depo just as long and when she finally got her peirod she has had it three times in one month. I wont be able to handle that.

                              I am going to see a gyno in a couple of weeks should i ask her to put me on something.

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                              • #30
                                I have skipped my period a number of times while being on the pill, but it hasn't subsided the urethral burning. Sometimes, the burning gets worse before my period. This time around, I had my period May 17-20. From May 20 until now, I have had continuous burning.

                                Yikes.
                                bunnykinb

                                6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                                tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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