Vestibulitis, Vulvodynia, and Urethral Pain

[michele]

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 vuvla...it'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.

-michele

[tillysav]

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:)

[dcoplin]

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

[michele]

hi...go to www.greenhealing.com (http://www.greenhealing.com) 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!

-m

[ickim]

do you use trameel ointment or gel?

[classics]

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.

[katiedid]

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,
Katie

[AliciaK]

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 either..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!

[poetgirl]

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.

[AliciaK]

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 tricky..one 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.

[LJINSD]

Hi,

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,
Linda

[AliciaK]

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 back..it'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!

[kmmk]

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 antibiotics..one for yeast infect..one 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?
thanks

[kmmk]

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

[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.

[poetgirl]

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.

[kmmk]

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???

[sadcrystal]

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????

[sadcrystal]

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!

[ShePurzz]

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

[sami4]

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

[marsi4]

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

[kazi]

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??

[sunni]

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..

[natalie2006]

I also have Vulvar Vestibulitis. :smile tee

[natalie2006]

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.

[natalie2006]

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.

[bunnykinb]

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.

[jamies]

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.

[bunnykinb]

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.

[natalie2006]

Did anyone get Vulva Vestibuliis after they had a hysterectomy If you had V V before a hysterectomy did it make it worse or better?

[natalie2006]

does anyone get the burning, itching and raw feeling with Vestibulitis? and what do you do about it?

[natalie2006]

did anyone who has a full hystercodomy have trouble with there IC or Vulva Vestibulitis or Vulvodynia after there hystercodomy? Making there IC worse or better? Because I read that if you have a full hystercodomy that it can make things worse.

[natalie2006]

michele What are doing for the Vulvodynia pain? Because I have Vulva Vestibulitis?

[bunnykinb]

How was this diagnosed? It seems so similar to the urethral burning. This gets confusing when dealing with IC pain too.

[mixer422001]

My urethra has always hurt worse then my bladder execpt before my
my period starts then everything hurts My gyn has given my a lidocaine gel to use I can insert in my urethra like the do before they cath you some times
I usually use it at night before bed. I have the hardest time going to sleep because of the pain when I lay down.:dizzy:

[poohboots]

With my vv And IC I have a constant burning senasation the the vaginal area It seem to be wrost after I go to the bathroom I started useing charmin ultra tp it is soft it has helped a bit I only go to the bathroom 20 time a day! I need sofenest. The only problem I have with sex is after wards I feel swolen and dry but I did just have a baby 8 week ago I hope that gose away. I have also changed my laundry det. to a dermatologically approved unsented detergent like purex or arm in hamer. I seem to have a heavy discharge does anyone else have this problem ???? I need to were pads but they irratate me does anyone know of a good pad to use that have mostly cotton so it does not rub the skin???? I hope I helped someone and hopefuly someone will have answers to my questions God bless everyone I will keep all suffers in my prayers :grouphug:

[poohboots]

Mixer have you tryed a cold ice pack or laying on your side with your legs pulled in tight that helps me a little hope you feel better soon. :smile tee

[mixer422001]

No have never thought of using anything cold always heating
pads and have slept with a pillow between my legs for 10yrs now
I will try it Thanks..:flower:

[mixer422001]

Kotex and poise pads are good Always pads are a bit rough for me I have to wear a pad every time I go out.

[natalie2006]

Pooboots Go to your natural food store and get pads there. I use pads, Totelpaper and Laundry Soap from my Natural Food store and it seems to help. I also use Calendule Creme I get from www.vulvodynia-treatment.com. I love this stiff it helps with the burning. I also watch my diet. My husband dosen't like the cost of things, But too bad.:grouphug:

[bunnykinb]

If you go to the website for Poise.com, depends.com, serenity.com, there are free samples offered or you can ask for samples. I received a variety of sample from Serenity and coupons from Poise.

For urethra pain, I have applied ice packs since I need to cool off the burning. With pelvic pain, I apply one of those icey hot patches. The generic brands work just as well.

[ShePurzz]

Pooboots Go to your natural food store and get pads there. I use pads, Totelpaper and Laundry Soap from my Natural Food store and it seems to help. I also use Calendule Creme I get from www.vulvodynia-treatment.com. I love this stiff it helps with the burning. I also watch my diet. My husband dosen't like the cost of things, But too bad.:grouphug:
I can't believe that I have been doing the natural foods thing for so long, but NEVER even thought to buy natural pads or toilet paper!@!@! What a marvelous suggestion. And the creme -- I will look into that, but for me, the VV is relieved by using Zovirax (pills if it is bad enough to make me say "]"YOWZZA"[/COLOR]
in the grocery store, and creme applied to the skin when it is just a irritating problem.

I notice that I get my VV flares during my cycle - but dumb as a door knob, I have never thought to use a different pad!!! For the love of Mike! I have gone to a depends type of product to reduce the irritation to my VV area during my cycle, and I do use the Always -- and come to think of it - they are a bit rougher... but I CANNOT use wings! I hate them and I end up with terrible sores when I do.

I have also had shingles in the past and during this last bought of VV, the URO suggested trying the Zovirax and it really worked well -- but took a few days to really get me down to a low hollar... I stayed in the house for those days because of the attention you get when you are walking through a store, stop dead in your tracks and scream "OH FOR THE LOVE OF GOD... This is NOT okay!!!":loco: People stare at you when you do that... My husband, well, he just stands there looking at me with this quizzical look on his face ?? :elvis: Do you want me to sing back up honey???

Oh, life with IC -- VV -- IBS -- CFS -- any other letters they can come up with??? :help:

I guess we just keep learning -- new pads on the way -- new creme on the way... gonna check out those free pad samples above too... What a great post this thread was -- wonderful ideas... Thanks everyone... so excited.. new pads ... :woohoo:

Mary

[mixer422001]

I just recently switched to the natural pads they seemed to kinda work better, they don't stay in place that good and I have to wear my black under wear. The whole natural TP thing is up to the person I guess I ordered some from this site which was much better the the whole foods store kind it is very scratchy even my hubby asked me why ??? would I want to use scratchy stuff on myself.. The Best, Best thing the the soap they sell called very privite I love it because I always hurt after showering from what ever soap I was using. It's kinda expensive so I use another natural soap for the rest of me and then that just for that area.. I also have had shingles twice in the same spot which my Dr say's highly unlikly but of course it happen to me along w/ every other thing.. I'm going to call my Uro and ask about using zovirax also. Thanks for the info. Oh yeah and try the almond milk it really does work I don't know how it's not bad either even my kids like it.

[ICB]

My Vulvodynia and Vulvar Vestibulitis are usually made worse by allergy season; poor posture; myofascial trigger points (referred pain/burning); Pelvic Floor Dysfunction (PFD), and sometimes intercourse.

I have found that many medications that treat my IC have also been helpful in treating both vulvar conditions. Moreover, physical therapy and self-help techniques have also made a tremendous difference in my quality of life.

A great resource for comprehensive information on heat vs. cold therapy; PFD; Trigger Trauma, etc. is www.roadtoslainte.com.

Only your healthcare provider can determine if the above suggestions are appropriate treatment options for you; these are just some suggestions that you can discuss with him/her.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes to all, ICB

[natalie2006]

Well I went to my doctor, He told me that I'm healing fine But I'm just going to have to irgone my pain as far as the VVS goes and that he won't give me any Lightacane 5% because some people are allergic to it. And I felt like saying well when your Private Parts are on fire then you can tell me to ignore it, I well go see someone else. My husbands test came back negative for any yeast.

[Briza]

Hi Natalie
Good to hear you're healing, I'm supposing your're talking about your biopsy. As for ignoring the VVS pain, ignore that dr, see a new gyn, tell him/her you have used lidocaine before and got relief. I use 3% and it works well enough. I 've heard from very few people that they were allergic to it. You can always do a test spot and see how it goes from there. Also, if you can tolerate ibuprofen (advil) that helped me alot when my V symptoms were at their worst.
Best wishes

[natalie2006]

Thanks I'm not allergic to it. I have used it before. I have a few other doctors. Has anyone ever had the Surgery for VVS? And has it worked?

[maddy39]

I am going to my Gyn ( AGAIN) this Monday..
to give you a short ( hopefully) history about me..I had re-current Yeast AND bacterial Infections...( when i started sleeping with hubbie again ) after he was cheating...( a whole nother story) :(

I THOUGHT I was done with YEAST ( yea right....) any ways.....when i would go to the Drs.I always had some type of burning..and/or Itch..and there was always some kind of infection. I had like paper cuts in the Labia area.. and sorta dryness,,and SOME TIMES burn and or sort of an ITCH ( I guess more burn) after sex OR the DAY AFTER.Hubbie is convinced ITS HIM and I am allegergic to him. ( he has some type of ..MAYBE eczema) any ways...I was told by GYN to use ( ready for this??????) BALMEX to heal the area..I assumed it was from all the meds i was on..
well NOW im not so sure..

I DO NOT have PAIN or BURNING WITH SEX but can some times get it after :(

AND I have noticed it the end of the last week BEFORE my period as well..Im ok once i get it..

CAN I GET Vulvadynia in FLARES from EATING CERTAIN FOODS??

WHAT ?'s SHOULD I ASK GYN Monday??
any info would be appreciated,.

p.s. im currently also seeing a URO..
as IF MY HEALTH isnt bad enough..im a type 2 Diabetic..

with a bad back :( now i have had off/on again blader problems..
did an in office Cysto..NORMAL ( which from what i understand here doesnt mean much as far as Dx.)

dr doesnt thinki have IC..1st Uro said NO HE DIDNT THINK I did ( and hes 1 in my area that is very familiar with it) as well as my history.

1st Uro said NO becuase i do NOT get up in the nigt..i do not have constant freq.

THOUGHT I was better..
today had pressure..freq and a littlle urge..

and burning in urethra..


all but the burning was there before coffee..whixh is what starts me with the freq,

new Uro said to be sure of IC hed do a BIOPSY

UGH

please tell me what i should ask GYN as i see him monday ..I see Uro in 2 weeks P.S> new uro put me on MACRBID 2x a day for 1 week...i will KNOW Tuesday if i have an UTI I doubt it,MY LUCK stinks..

[ICB]

. . . I DO NOT have PAIN or BURNING WITH SEX but can some times get it after :(

AND I have noticed it the end of the last week BEFORE my period as well..Im ok once i get it..

WHAT ?'s SHOULD I ASK GYN Monday??
any info would be appreciated,.

. . . dr doesnt thinki have IC..1st Uro said NO HE DIDNT THINK I did ( and hes 1 in my area that is very familiar with it) as well as my history.

1st Uro said NO becuase i do NOT get up in the nigt..i do not have constant freq.

THOUGHT I was better..
today had pressure..freq and a littlle urge.. and burning in urethra..
all but the burning was there before coffee..whixh is what starts me with the freq,

new Uro said to be sure of IC hed do a BIOPSY ... UGH

please tell me what i should ask GYN as i see him monday ..I see Uro in 2 weeks P.S> new uro put me on MACRBID 2x a day for 1 week...i will KNOW Tuesday if i have an UTI I doubt it,MY LUCK stinks..

Actually you could be pretty lucky; you may not have IC, it could be Pelvic Floor Dysfunction or trigger points (both interior and exterior), which might be causing your vulvar, vaginal and bladder symptoms. To find out more information on Pelvic Floor Dysfunction, Trigger Points, etc., you may want to visit www.roadtoslainte.blogspot.com, check out their Archives/Previous Posts and read the following articles:

1. Pelvic Floor Therapy
2. Trigger Trauma
3. Sex, Lies, and Dyspar . . . Who?
4. Let's Go! Really Go!

These articles may prompt some great questions for you to discuss with your healthcare providers. Furthermore, if you need any informational handout or fact sheet on PFD, Trigger Points, Cystoscopy Under Hydrodistention, etc. please email your request (with the requested information in the body of the email) to icrelief@verizon.net and I will email those handouts to you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB

[natalie2006]

Yes you can get flares from eating certin kind of food. Go to this web site and get this Book. WWW.VULVODYNIA-TREATMENT.COM. This book well tell what kinds of food to eat and clothing etc. ect. Very good book. I use this book and the Calendula Creme with some estrogen creme and it helps with the stinning and burning. And get some Calcium Citrate. Trust me I have IC AND VVS. :smile tee :pray: Life well get better! As far as the doctor goes if they are not listioning to you find someone out there that well. There are thousands of doctors. Good Luck!!

[maddy39]

Ok I didnt know you could get flares from certain foods..I guess i should talk to my GYN when i see him MOnday huh? I ate strawberries ( with out my usual cereal with them ..) as a snack and i had some burning ( ?) Just went away ..& I was able to go to dinner with hubbie..THANK YOU for writing back & for the site i will go look!..I am afraid to eat calcium as I have a history of kidney stones and 1 time i think it was a calcium stone :(

[natalie2006]

if you buy that book it well tell you to stay away from strawberries because it is a high oxlate food. you need to be on a low oxlate food diet.

[maddy39]

I wonder if i do have the Vulvadynia...becuase i ate the strawberries as a snack....with whipped cream ..and it bothered me..it went away tho & i didnt have to drink water or any thing..

can i get burnig ( down there) from Ic too? it seems to be just the top half of the area..sorry for the graphics

[maddy39]

can I view that book online? I guess i can follow the IC diet dr gave me..as i type i am fine :woohoo: i drank water today

no burning ..(NOW )when my bladder is full and the freq is gone!!!!!..does this sound like IC? my New Uro says if i drink water and it goes away..( with me it also prevents burning ) THEN ITS IC HE SAYS!!!!

[natalie2006]

no you have to buy the book. It only comes on line. And yes it does sound like IC. Any the only way they know you have it is go up insi of you with a scoop and look at your bladder.

[maddy39]

I did an In Office Cysto..every thing was Normal I guess you were reffering to a Hydro? to make sure this is what i have?

[natalie2006]

yes i mean a hydro

[ShePurzz]

What is vulvar vestibulitis?
Vestibulitis is a condition which causes redness and pain of the vestibule. Vestibulitis is an inflammation of this skin and the mucous secreting glands found in the skin. The mucous secreting glands are called the lesser vestibular glands. Vestibulitis may include all the area around the opening of the vagina but is most commonly seen in the lower part.

Vulvar vestibulitis occurs in women of all ages. It can occur in women who are sexually active and also in women who have never been sexually active.

Many women with this problem have suffered physically and emotionally for months or years, have seen a number of physicians, and have tried many unsuccessful treatments in search of relief.

What are the signs and symptoms of Vulvar Vestibulitis?

* Severe pain with pressure (for example: biking, exercise, tight fitting clothes ).
* Vaginal entry such as tampon use or intercourse.
* Burning, stinging, irritation, or raw sensation within the vestibular area.
* Vestibular redness
* The urge to urinate frequently or suddenly

How is vulvar vestibulitis diagnosed (identified)?
Your doctor or health care provider will examine the vulva and vestibule to identify the common skin changes seen with vulvar vestibulitis. Pain is usually felt if the vestibule area is touched with a cotton tipped applicator. A sample of your vaginal discharge is collected and tested to rule out infection.

What is the cause of vulvar vestibulitis?
The exact cause is unknown, but many studies are being conducted to determine the cause of vulvar vestibulitis.

I hope this helps to clarify what it is -- I needed this information also... There was a great drawing for anyone interested in knowing exactly "where all your parts is at" :hi: parts!

VISIT: http://www.aafp.org/afp/990315ap/1547.html
and scroll down for actual photos -- oh my GOD, the psoriasis has to hurt! -- or continue down to see a graphic depiction of the entire area -- This article is too long to post here, but has some great information that may help others in seeing/knowing what actually hurts and what others have tried.

I guess I would say that I have generalized 'dull aching pain' mainly on the left side of my labium majora (fancy eh?) Then when I get the Vulvadynia, it is in the similar area but SCREAMS with stabbing pain... My doctor said it is similar to my shingles -- however -- the shingles haven't been back for a while and the Vulvadynia seems to flare after or during my cycles. It too didn't return this month -- praise the Lord! -- however, I do have this generalized pelvic pain that is extremely annoying and painful.

Not sure what any of this means, but thought it was worth trying to get this picture to download... Hope it works.

[natalie2006]

Well I went to an other Doctor yesterday and he though it was all in my head and he though the others doctor Dianoses was wrong without taking a look at me. He also tolded me to stop scating at myself. I don't even scartch. It just hurts. Oh well a other doctor well do. What is it with these dumb doctors down here. Why can't they just do where she just left off.

[maddy39]

I have been having problems getting on to respond..it asks me to OPEN another window..hmmm

so IF I dobt respond to ery one please forgive me..HOPE I CAN.

i hope this goes thru too..

HOW can he say the other Drs DX was wrong...??? IF he didnt even LOOK at you..grrrrrrrrr Makes me mad. And how he an HE KNOW u scratch if he doesnt look..grrr

where do u live? Is there any 1 else u can see?
I HOPE i can continue with mime..I had a 4 visit approval ( that primary got for me ..for 1st Uro i saw)..then i got 3 for this new UAro..
and I HOPE I can go more then 3x..

i talked to his receptionist about this and she said ..I DONT EVEN NEED a refferal
so we shall see..I may cal my Ins to MAKE SURE I CAN still go to him.

i read th epost here on what Vulvadynia is..Ironically alot of yesterday i had a BURNING down there..IF i could PM u I would...

i talked to dr about this..when i saw him ( Gyn) Monday he said he didnt think i had it...and then i spoke to him AGAIN on th eohone..hes another who is great about calling back..

told him that i had this..but it isnt ALL the time..he said if it is al the time we will treat it ( Then i would assume it was yeast or bacterial) He doesnt want to ..til then and then only when we are sure..as 1 thing leads to another

and i will get some thing else..trying to cure some thing else.

I HAVE NO idea why...it was burning but i am 99% sure it wasnt Urethra burning..which is GOOD
i hope you can get a dr who will HELP you HUGS I feel for you..write me any time..hope u are well..Maddy

[natalie2006]

I live in Springfield Mo. I don't know what these doctor Problems are. But it is real pain it's not in my head. I well find a good doctor soon I hope.

[maddy39]

I HOPE you get some answers SOON...HUGS!!! I do understand & it can be very upsetting and discouraging..
I recently chanegd Uro;s and I keep a journal SO I HOPE he can help me too..let me know what you find out Maddy

[natalie2006]

ok thanks :smile tee

[MimeRapMusic]

I'd read this thread this morning, and am sickened by the attitude of some of these egotistical (and bordering on abusive, in my opinion) doctors attitudes, who seem to think that we women have nothing better to do than to complain about things that are indeed, SERIOUS & PAINFUL; as though we enjoy spending our hard earned money on them? only to be shuffled about from doctor to doctor, and then told what we experience on (for some) a daily basis, is in our heads!?
- - - And people wonder why I don't trust nor have any respect for doctors anymore - - - too bad all the women who've been treated this way by these insensitive (inserting sarcasm here in the usage of the word:"gems") can't get a refund for having their time and energy wasted in going to seek help from these doctors in the first place.
- My heart honestly goes out to you all; the struggles you must endure is heartwrenching! I feel terrible about it; wish so badly I could offer you an answer to end all the pain. But again, as I've said before in another post, I do think that this has to be the best bunch of people in supporting one another that I've come across, concerning health issues. - I am impressed with the sincerety that I see in you all in your empathy toward one another. (I just wish I could say/feel the same thing about most doctors in general; although I'm sure there are a few good ones about, they are just so hard to find anymore, it seems). - I wish you all the best in the continuing of your searches for an improved quality of life, because ... you all deserve it. :)

[Dianne]

Tell me more about the traumeel suppositories. Was this just for urethral pain or for bladder too? Did they make the traumeel suppositories? I don't see them listed anywhere, just the gel, ointment. My urethral pain is controlled with almond milk but bladder pain is still off the chart.

[HopeSeeker]

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????

Yes, sadcrystal, there is hope. I first experienced VV in '92 before it even had a name. It lasted about 1 and 1/2 years and gradually left. I now have a recurrance as of 2/06 and in view of my remission of 14 years, cling to the hope that this bout will also go away. I have learned that even though it is so difficult to cope with the miserable pain and discomfort, it is so important to concentrate on the fact that you CAN recover.

[cindydi]

I also have the burning/itching and bacterial vaginosis. I am going through many treatments and wonder what is going on. I too feel like my insides are being ripped apart. I kept seeing the gyne who now gave me a standing prescription of metrogel which helps me only briefly. I like you dont know what to do next.

[cindydi]

I also have the burning/itching and bacterial vaginosis. I am going through many treatments and wonder what is going on. I too feel like my insides are being ripped apart. I kept seeing the gyne who now gave me a standing prescription of metrogel which helps me only briefly. I like you dont know what to do next.

Good Luck

Cindy

[ICB]

Have you been prescribed an antibiotic to get rid of the bacterial vaginosis? It is very important to treat infections quickly; this may prevent irritating the nerve endings further.

Only your healthcare provider can determine if the above suggestions are appropriate treatment options for you; these are just some suggestions that you can discuss with him/her.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB

[cindydi]

I have been prescribed many antibiotics. I am going to see the urogyne about this hopefully he will have some ideas of whats going on.

[deborah bush]

Natallie, my sister lives in Springfield, MO. I was out there last Christmas.

Deborah Bush:hi:

[KaraLynne]

Reading about all your pain issues sounds so familiar! I have urethral burning and pain during sex. But, I think I'm finally beginning to find answers thanks to someone else on this site and I wanted to share with you all what I've learned:

I read the book Heal Pelvic Pain by Amy Stein and it is a must-read book. You can read portions of it on google books, if you want to try before you buy.

Secondly, I saw a physical therapist who diagnosed me with pelvic floor disorder and she said that is causing all my urethral pain and also all my painful sex as well. Apparently my pelvic floor muscles are very tight, have shortened and are also very weak. They are so tight that she couldn't finish the internal vaginal exam. Also, my one side is much more flexible than the other and it's probably causing an imbalance and making things worse. My muscles were so weak that I could only hold a kegal for one second and someone my age should be able to hold one for ten seconds, no problem.

We are doing exercises to stretch those muscles and then to strengthen them later. So far, after about a month of doing exercises, I think my pain is getting weaker and also it doesn't last as long. I still have pain every day, but I think it's getting better. My physical therapist says that it will get 100% better--here's hoping! She has had lots of patients with my condition.

Someone else on this board recommended the Amy Stein book and I'm so glad they did, so I would definitely recommend it to everyone. I'm not sure that physical therapy for pelvic floor issues will solve everyone's problem, but for those it can help, I think it's a lifesaver. I just wanted to cry tears of relief when the physical therapist said, "this is your problem and this is the solution"--I've been waiting to years to hear something like that!

[amy2822]

I too have just started physical therapy and am doing some internal stretching along with strengthening and corecting my posture. My hips were not aligned and she believes that is causing some of the pain. I'm curious to know exactly what type of stretching you are doing.... Right now my PT has me using a small diolator and I am just putting pressure on the areas that cause me pain....

[KaraLynne]

I am doing stretching exercises for my hips and abs right now. I am using a dialater as well., which is helping a lot. I'm not supposed to have sex until my muscles are better. In addition I am doing the stretching exercises in Amy Stein's book. My PT approved them, although its not part of the program that my PT has me on. Hope that helps.

[amy2822]

Sounds like we are doing a lot of the same things! Makes me feel better knowing that other PT's have the same technique as mine! Good luck with everything!

[champ33]

HI Michele,
I have a few question to ask you and I live near Philadelphia and can you give me info the name of the dr .. So I need to get better with urethra it really bother me alot and it felt like I had a bladder infection it like flare up. and I don't pee burn just normal . I had Ic for 9 yrs now it was under control and I got better but when Vulvodynia and endo came along at the same time the first one it was Jan Endo, and just found out April Vulvodynia and my vulva is under control now but I kept getting yeast infection for the past 3mths and one is March and one in April and One now .
I'm feeling alittle better but it come and goes when I feel my urethra alittle flare up. If you can give me info the name of the dr? It did the heaal remdy help the urethra? Just wondering .
thanks alot.
Champ33:smile tee

[goldensky]

Hi kmmk
before you take anything like premarin look into Bioidential hormone. I suggest reading a book called
" Natural Hormone Balance" by Uzzi Reiss M.D/ O.B. GYN