I was recently diagnosed with inflammatory vaginitis, and no dcotor can seem to tell me the cause or what triggered this problem. Has anyone else heard of this problem, and had success in treating it? Has anyone had a life-long complications from it? This is all very new to me, and upsetting considering I've never had a problem before in my life.
Any advice is greatly appreciated.
I was recently diagnosed with Inflammatory vaginitis also. The doctor said it is very rare. I was given cortisone to use vaginally twice a week and premarin. The premarin caused problems and so he stopped it. Last week he told me that I would take the cortisone the rest of my life and to come back to see him in a year. I am confused with this and am searching the internet for information. That is when I found your link. I would also like any information on this subject.
i too have inflamation (inflammation) of the virina and when i have sexual intercoure it gets inflamed and bleeds could this be inflammatory vaginis are they the right sytotoms of this ? if eny one help ?
After many tests which were all negative for bacteria and infections, and much research of my own, I believe I have desquamative inflammatory vaginitis. I have yellow discharge and soreness. I have been told that they do not know what causes it and therefore do not know what cures it. I am on a trial of Clindamycin cream every other night for 6 weeks to see if that works. I've not been diagnosed, my Dr is doing an elimination thing to see what may work. Can't find any definite answer anywhere.
I was diagnosesd with desquamative inflammatory vaginitis. My doctor told me its an auto-immune response where for whatever reason, your vagina decides to continually shed cells. The yellow discharge they tested showed lots of white blood cells and strep, which are classic conditions. I can emphathize with you - this has been going on for about four months. My doctor tried me on estrogen and hydrocortison suppositories on a taper for about 5 weeks. It worked great for awhile, but my symptoms have returned. I head back to my doc tomorrow. I am sore, itchy, and generally uncomfortable. Maybe the estrogen would work for you. How is the Clindamycin working for you?
i had a pap smear test done and the results were negative no cervical cancer.however it revealed that i have cellular changes associated with inflammatory effects and i should do an (HVS) High Vaginal Swab test.can anyone tell me what this means.have an appointment wt my docter but that is quite on the 3rd nxt month.i know it is some sort of infection but am worried as to the extent of the problem.
High Vaginal Swab is used to detect on Gram stain BV (bacterial vaginosis), yeast, and perhaps Trichomonas. However, if something else is causing an infection (such as Staph or Strep), it may not be reported since these organisms can be normal flora so it is not routinely cultured. HVS is NOT used to detect STIs gonorrhea or chlamydia (a cervical swab is required for that).
I just went to doc this week, and all my cultures came back negative for the white blood cells and strep, so it seems like the suppositories I was on treated the DIV pretty well. I haven't had any of that discharge I did before that lead to the DIV diagnosis (knock on wood...). Maybe you should talk to your doc. about an estrogen/hydrocortison suppositories? I took one every night for two weeks, then just twice a week for two weeks and once a week for two weeks. My doc had to order them from a special pharmacy since they don't just make them like a regular prescription, so insurance often does not cover them. I still have a slight irritation, and my doc. said that the slight irritation that I still have is unrelated to the DIV and likely just cronic (chronic) inflammation or from getting over all the extra estrogen. Good luck!
I am pleased your problem has been sorted. Did your Dr say if it would come back, or what to do if your irritation carries on? About the estrogen - were you ever tested for estrogen deficiency? Do you mind me asking if you are menopausal?
So pleased to hear your problem has been sorted. Did Dr say if it might come back, and what to do if irriation carries on? Did you have test for estrogen deficiency? Do you mind me asking if you are menopausal?
I am only 25, so not menopausal yet! Dr. said to only come back if I get that yellow discharge; just deal with irritation by using compresses. I noticed that discharge coming back today... of course, right? JUST when you think you are getting some where. I'll give it a few days. I was never tested for estrogem deficiency, but I'm not sure I'd get an accurate reading since I'm on the pill.
Went back to Drs today. Continuing with Clindamycin every other night for another 4 weeks. Don't feel this is working though. Have your symptoms returned like before and have you been back to Dr? I am only 27 so don't think I have estrogen deficiency.
I can so relate to all of your symptoms. I started having inflammation in the vulvar area and spotting after sex, went to the doctor they said DIV. I was treated with the clindamyacin which did make the increase in white blood cells go away, however, the inflammation continued, also the spotting after sex. I tried estrogen inserts as well, and they didn't seem to help. Also was given various levels of hydrocortisone cream, which while it seemed to relieve symptoms of itching and burning from discharge, did not really improve the inflammation. I also was tested for all brands of yeast, STDs, everything, I even had a biopsy of the vulvar area which was inconclusive. I am 25 years old as well. I think it's so interesting that so many of us are in our 20's and definitely not estrogen deficient or most likely not. I have an appointment with a vulvar disease specialist this summer, but I have been looking for a support community. This has been so difficult to deal with especially in terms of relationships and sex. Would love to hear from all of you.
I was told I have Chronic Inflammatory Vaginitis, too, about 8 years ago, but mine is caused by medicines, food, & liquids my body doesn't like. The big flare-up then was a result of prescription potassium I'd taken for years. The result was cellulitis of the "area", and later a biopsy. Since then, I've learned that eating salsa, fresh pineapple or mangos has the same burning effect on the area. Currently, B12 pills caused a flare-up about a month ago, and my dr. gave me the strongest cortisone cream she could prescribe! I am 63 and have very few days without pain. Paris75008
I am 27 years old and have been dealing with vaginal itching for the past year. I have had some discharge that looks yellowish/greenish. My itching is on the inside and outside of the vagina. Does it sound like I have DIV? My docotor has been doing test after test, including a recent biopsy and culture that showed high white blood cell count. My results came back with yeast, so she put me on a 3-day course intravaginal suppositories. The medicine worked, but it has only been a month and I am back with the itching again, so I have to go back to see her. I live in Houston and my docotor is one of the best, but I am wondering if I should hee some kind of a specialist. Anybody have any advise?
I have been having these problems too. I am 24 and It seems like ever other month I have to get new antibiotics. They said that I had strep the last time I went and a very low white blood cell count. I do not know why all of this is happening. It all started about 7 months ago. I did start taking Sprintec the 3 month no period pill around that same time as I have had really painful periods in the past and i decided that I only wanted 4 periods a year. Do you think this is the cause? I have been on bcp's before and never had any problems. I have been diagnosed with BV also in the past 7 months which I have never had before. While on antiboitics I feel a lot better and as soon as I go off of them within days the pain comes back and i feel like there is a clamp inside squeezing everything. The docs are confussed and just keep giving me more and more antibiotics.
I was diagnosed wiith desquamative inflammatory vaginitis 5 years ago. Clindamycin works for a few weeks, but symptoms come back. The only way to manage this is long term treatment with a compounded cream of Clindamycin, Estrogen and Hydrocortisone. Use nightly for a month, then every other day for 2 weeks, then as needed-I use a few times a month, usually right before my period. As I've said, it's been yeras, and this is the only treatment that has managed to really reduce symptoms overall, but it seems to require ongoing maintenance and there does not seem to be a real "cure/"
I was recently told that I had a trichomonas infection, only to have my culture come back as negative for trichomonas, bacteria, and yeast. Luckily, my doctor spoke to a Pelvic Pain Specialist who suggested DIV as the diagnosis. I am being seen by said specialist on Saturday.
Pelvic Pain Specialists may know more about DIV since a common symptom is pain with intercourse.
Regarding the low estrogen fact. I read somewhere, that sometimes women on the pill naturally make more estrogen; therefore, taking the pill lowers the estrogen in their bodies and their bodies respond as if estrogen is low (ie post menopause). This is a case by case basis; for many women this is not the case. Anyway, I started having DIV-type symptoms on and off when I started the pill, so this is something I'm going to discuss with the specialist. There is a possibility, that if this is a recurrent issue, and you're on the pill, the next step may be a trial period off the pill to see if your symptoms improve.
My story is very similiar to what many of you have wrote about above. Currently, my gyno is trying to fgure out if I have inflammatory vaginitis, vulvodynia, or ??????. Please let me know what has/has not worked for you. I am searching for hope and hopefully a cure. Thanks!
Inflammatory vaginitis is caused by, at least, one of the following: bacterial vaginosis, trichomoniasis, candidiasis and desquamative inflammatory vaginitis.
Treatment of cause
The vulva should be kept as clean as possible. Soaps and unnecessary topical preparations (eg, feminine hygiene sprays) should be avoided. Intermittent use of ice packs or warm sitz baths with or without baking soda may reduce soreness and pruritus.
If symptoms are moderate or severe or do not respond to other measures, drugs may be needed. For pruritus, topical corticosteroids (eg, topical 1% hydrocortisone bid prn) can be applied to the vulva but not in the vagina. Oral antihistamines decrease pruritus and cause drowsiness, helping patients sleep.
Any infection or other cause is treated. Foreign bodies are removed. Prepubertal girls are taught good perineal hygiene (eg, wiping front to back after bowel movements and voiding, washing hands, avoiding fingering the perineum). If chronic vulvar inflammation is due to being bedridden or incontinent, better vulvar hygiene may help.
I am 50yrs old, fit and healthy and like so many of you i have had intermittent problems for years but over the past 3 years have had very little relief from these symptoms, clydimycin is still the best but symptoms return quickly after stopping the course. Health E cream soothes externally, I have found wearing a tampon on the heavy clear fluid days stops the blistering externally. i really hope someone is working on a cure for this, lucky i have a wonderful supportive husband of 30 years, but still is a huge strain on a relationship and some days does your head in with all the pain and discomfort. i have just started vitamin d supplement daily so will let you all no if it helps. keakaren.
For the last 9 months I have been from doctor to doctor trying to figure out what the heck was wrong with me. I had a yellow discharge, itching, redness, swelling, hurt to pee, sit, everything... oh and just to think about sx hurt... yet all swabs came back with nothing. After biospies, swabs, and everything under the sun I went to a vulvodynia specialist and after trying all sorts of treatments we finally found one that works and it is treatable ! I was put on clindamaycin (twice a day) for 30 days plus was given a cream that I inserted every other night that was a mixture of clindamaycin and a steroid and within a week it had all cleared up and I have not had a problem since. I will still be on the cream for 3-6 months and could possibly have a relapse but my doctor has prescribed me oral clindamaycin to take at the first signs of this which is the discharge. Here is a website that helped me understand it a little more... http://www.brighthub.com/science/medical/articles/64874.aspx
I had DIV too and did the Clindamycin, hydrocortisone, estrogen combo cream inserted into the vagina. I had BAD REACTION however to the clindamycin. It caused something called "C Difficule" and blood in my stools so I had to have a colonoscopy to rule out any other problems. The gastrolenterologist said it was CAUSED by the CLINDAMYCIN! Eventually my DIV symptoms seemed to subside for a few years but now are back and I dont' think I should use the CLINDAMYCIN again b/c of my reaction. Anyone have this problem and/or know of an alternative?
I am 23, married, and suffering from vulvadynia and DIV. I have had this my whole life, and was diagnosed about a year ago. I was put on Hydrocortizone, clindamyacin, estrogen, and temovate. They helped but certainly did not cure. It helped enough for me to finally be able to have sex(painful but not excruciating) with my then fiancee, who has been with me now for over 5 years. We have since moved to an area far from any vulvar specialists, and we are no longer students, so I can't rely on my mom's insurance anymore. i.e. I'm broke, and had to stop treatment for the DIV. I haven't been able to have sex since. I can't even use a tampon, it is the most horrific pain I have ever experienced to take one out.
When I was treated I found out that the problem had gotten worse because I was taking birth control. When I decided to go off of birth control, I didn't have more period for 10 months, and then only had one because I was prescribed drugs to induce it. Amazingly, for the first time in my entire life, I am getting somewhat regular periods with no help from any drugs. I take this as a good sign. I even managed to get a tampon in, though its still excruciating to take it out.
I am so lucky I have my husband, I feel like any other guy would have dropped me years and years ago. But now that neither of us are virgins anymore, it is hard to accept not being able to have sex.
Is there anything that I can do in terms of home remedies that might enable us to have sex again? I have switched my shampoo, conditioner, body wash, and laundry detergent to all fragrance and dye free, but I'm not sure thats done anything.
Oh, where to begin! I may have posted under other topics before, hard to say at this point.
I've had severe vulvar/vaginal burning, and also what may be irritation in the urethra. I have tested negative for everything under the sun. STDs, yeast infections (Several strains) Bacterial infection, HPV, you name it. I am 32, and not on the pill.
All blood, urine and vaginal cultures pop up negative every single time. I am going in for yet another urine test to see about the urethra possibility, and also for a vaginal ultrasound just to check things out there since we haven't done that yet.
This all began after being with my then-new boyfriend in his hot tub. Water tests on said hot tub were inconclusive.
I have had not one, but two vulvar biopsies, the most recent one was done in 4 locations, and only about two months ago. I have not had sex in over four months, and can't even stand to think about it.
It is constant, unprovoked burning/stinging/irritation/rawness. I have no discharge, just inflammation, which is all the biopsy results showed.
I have been on:
Lidocaine/Estrogen compounded cream
Amitryptaline/ Bacoflen compounded cream
Valium vaginal suppositories
Oral Elavil (amitryptaline)
Neurontin (when a specialist thought it was nerve related)
Diflucan (Even though I have never tested positive for yeast in my life)
Clindamycin (orally and vaginally)
Oral steroids for short courses
Allegra, in case it was allergies.
Nothing changed a single thing. Not even for one hour.
I am currently doing inserted clindamycin every night for what will be 7 days, and was supposed to use proctofoam, which is hydrocortizone designed for hemmorhoids,but it burns and comes in an aerosol can that isn't very easy to use.
I feel I have some of the symptoms of DIV, and my Dr agrees it sounds similar. She has worked with me and tried many things, with a lot of patience, but I am so sick of never finding an answer to this, and never feeling any better.
Have any of you had a nice big dose of antibiotics through an injection? did it help?
Have any of you had an ovarian cyst turn out to be the cause? How about urethritis or an unusual UTI that didn't come with the usual symptoms?
An allergy? anything?
I have already switched to hypoallergenic, dye free/perfume free bath and laundry soap. I shower, instead of baths. I don't wear underwear anymore..I gave up. I don't use douche, perfume sprays, etc..I'm following all the rules of good vaginal hygiene, and still get no relief whatsoever.
I cannot believe there are this many women who are suffering without an answer or treatment that works. It's a crying sin in this age of technology.
hydro-cortisone suppositories (designed for anal, but used vaginally) helped me some. I did one morning and one in the night for a month. What has helped me more than anything is Lyrica. I have been taking it for 5 months. The pain/burning is 95% better. GOOD LUCK!
Try Replens or plain yogurt for some natural but temporary relief.
Sorry for the long post. But I think the more we share, the better chance we have of seeing what we have in common and maybe figure this out ourselves.
I'll be 52 in August. I'm fit and a healthnut. I have a yellow, frothy, pus-like discharge that itches and my vagina is inflamed. When my gyn inserts a speculum I want to grab his gonads! Last May my gyn put me on estrogen/progesterone cream to help with night sweats and a yellow discharge I had developed. I apply the cream to my thigh nightly. When he tested the PH of the discharge he said it was off the chart for being alkaline. The hormone cream works great for the night sweats and somewhat for the yellow discharge. It worked well enough on the discharge that I didn't think about it. Two months ago I took oral antibiotics (amoxicillin) after dental surgery. The first day I took the antibiotics the yellow discharge came back in full force and I'm still dealing with it. Applying a little plain non-fat greek yogurt in the vagina is very soothing. It gets rid of the burning and itching for a day or two but then you have to reapply it. Replens also helps. Replens produces a soft-tofu like discharge that the instruction sheet says are the cells my vagina is shedding. (One or two people in this discussion mentioned tests showing lots of vaginal cells in their discharge) I've had a vaginal discharge it seems my whole life but it was always creamy, like body lotion. My gynies always said that the creamy discharge was "normal" but other women say their discharge is crystal clear. I've had a pap smear done every year. All "normal". I've had ovarian cysts removed from both ovaries. One ovary was removed because the cyst was large and diagnosed as "pre-cancerous". I've had fibroids removed but I still have my uterus. I've never been pregnant. For the past several years my yearly blood work has shown that I have a low white blood count. But the doctors could never say what that meant of what is causign that. (Someone else mentioned in this discussion that they have a low WBC). Diabetes runs in my familiar but I haven't developed it. I take a Diovan/HTCZ combo for high blood pressure. I eat a lot of fruits and vegetables. My lunch is usually a large salad with lots of different vegetables. I drink soymilk daily. I've had enough of this yellow discharge. I'm calling my GYN tomorrow.
Been suffering for 5 months. Hurts to sit, to pee, to have sex, to wash etc.. Treatments I had were OTC yeast creams (just in case) Flagyl intravaginaly and by mouth. Pap was neg. Slide was positive for white blood cells. Tried 1 week of Clindamycin crean intravaginaly. Oh what wonderous results after one day! Used it for a week, and all symptoms resolved for two weeks then came back! Went back to the gyno and he had just read a study about Desquamiting inflammatory vaginitis. So back to more Clindamycin for a month this time. Sadly after one dose I broke out in a horrific rash. Now I am allergic to Clindamycin :(. Gyno is on vacation so had to go through the doc on call for proctafoam. It was like an act of congress to get a script and I only got enought for one can. Not enough for the month long RX I need. It's not working as well as the Clindamycin, but I can have minimally painless sex with my husband. Although I can only tolerate it for a short time.
I can empathize with all of you but didn't see anyone mention the use of Boric Acid. My specialist had me use it after the steroids and antibiotic initially. You get it from the pharmacy and put it in regular gelatin capsules. It has worked wonders for me. I went from extreme discomfort to barely noticing I have any problem. I started twice a week and now I can go once or twice a month. My doctor really saved me! However, you cannot use it if you are trying to get pregnant or using latex condoms.
Hope it helps!!
I've had this discharge since I was 12. I'm not 22. I never seeked help because I had no idea what this discharge was, and I thought it was normal. I was way to embarrassed to tell my mom, and when I finally did (when I turned 18), she made an appt. for me with her OB/GYN. The doctor did not look at me because I was not sexually active, and said the dishcarge was probably normal. I knew it wasn't, so I found another doctor, and she said I had Bacterial Vaginosis, and put me on metronidazole(sp?). It worked, but only lasted a week. She then later said, I had a yeast infection, and put me on diflucan, which also worked, but only lasted a week. She put me on the same pill, but told me to take it once a week for two month. There was change. I found yet another doctor, and she tried the same medicines, still didn't work, she put me on different forms of clindimycan(sp?) and those did not help. We've also tried Boric Acid, and some other cream. Those did not help either. Now she says I have DIV, but said she had no idea how to treat it.
Hi, I am now going through DIV as well, my doc said although I do not have the exact symptoms since I am having the mild burning sensation she has diagnosis me with DIV and want to try me on the hyrdrocortisone suppository for 4 weeks. My concern along with the discomfort is weight gain with taking steroids. Did you gain weight.
Hi, im just about 25 and ive been to the gyno at least twice this month already due to horrible itchiness, soreness, and just being so uncomfortable down there. I have never had anything like this before. Within in the last 3 months i stopped taking birth control, wondering if this is associated with this.. I have had two swab tests done and been treated for bacteria vaginosis and yeast infections however nothing showed up on the second test. And i was tested for all the stds that can be detected by swabs and paps..Even did blood work for herpes and hiv..The gyno gave me a prescription for the clotrimazole-bethamethasone cream to be applied twice a day externally. However, the redness and soreness isn't going away.. Ready to pull my hair out because i don't understand whats going on and i don't even want to think about sex and my poor husband is being patient.. Im waiting on results to see if its the group strep b thats causing all this.. Lets hope its that and that i can be put on another antibiotic..If its not strep then off to the specialist i go.
I'm am only 18 years old and SO ready to get rid of this burning! I also took the pill Sprintec, within the first week or two I experienced burning. I had switched pills about two or three times in a three month period (don't know why my doctor suggested that). I stopped taking the pill, however the burning didn't go away. I have relief sometimes, but four months later I'm still experiencing the burning. I've been to two different doctors, and all of the swab tests have came back normal, besides high strep, however the doctor said that this wouldn't cause my problem. I'm thinking about getting blood drawn to see if my problem could be hormonal, even though my doctor said she thought my problem was inflammation. What do you guys think? Can anyone give me ideas to help my symptoms/get rid of the inflammation? The burning keeps me up at night a lot, and its really starting to take a toll on my relationship and my classes /:
Don't know if anyone has had vitamin d levels checked. My doc checked mine and I'm low. Per his recommendation just started using Bio Tech's vit D3-5. Found this article. The Docs call mine vylvodynia even though it's only vaginal....... I really don't think most doctors have a clue what they're doing / diagnosing but are far too arrogant to admit the fact. (Don't you ever wish a Doc would just tell the truth and admit they don't know and they'll have to research it??? I mean, come on, if we can do years of research on how to try to cure this don't you think we could get a little understanding and time for our $120 or more??)
I did a google search 'vitamin d deficiency+burning vagina' and this interesting website came up:
Women's Voices for Change & an article from a 53 yr old woman who has painful intercourse.
In the reply from Dr. Pat she mentions treatment with vitamin D3 and there is an article link also about a Dr. Monica Peacocke, who specializes only in the treatment of vulvovaginal disorders. (Don't you wish Dr. Peacocke was your Doc??!! :) ) I hope this is helpful to someone. I have spent multiple thousands of dollars on herbs / supplements with no results & that much again on Docs so I know what it is like to not want to trust in one more thing to try only to have it let you down. I haven't been on the d3 long enough for me to tell, but vit D3 deficiency makes sense because of other symptoms being related to a d3 deficiency: like multiple across the board food intolerance, severe chronic fatigue & go into a narcoleptic state from eating most everything & brain fog so severe I cannot work even the most menial job. I don't go outside so it would follow that I'm not getting the d3 from the sun and with food intolerance I'm not getting it in my food. And as we all know once our bodies show symptoms we're already very deficient in nutrients & symptoms are the body's way of screaming for help.
Please don't be discouraged, beautiful woman! There is always hope. Do not let your heart be troubled. Trust in the Lord & lean on Him - our world has sickness, disease & horrific things in it, but the Lord is trustworthy, purely passionately loving, gentle, peaceful, kind and He adores and approves of you, beautiful woman. Being in Jesus presence gives me the strength to live & to not give up despite life progressively crushing me over the last five years. Please don't give up hope! Please hang on - your cure just around the corner - be blessed!!
I'm happy to say that Dr. Peacocke is my doctor. I got very emotional and cried in the office today because somebody finally explained to me what no doctor has been able to do in 5 years(other than misdiagnose me). She has just put me on Vit. D supplement(a very large dose) as well as Folgard Rx. I'm supposed to take both for 12 weeks and follow up with her.
How much vitamin D was prescribed to you from Dr. Peacocke? I have DIV and I've been stuggling for 2-3 years. I haven't tried the 4 wk series of clindamycin. I have this knee jerk reaction that it just won't work. I just bought probaclac to take as a vaginal suppository. I take at least 4000-6000IUs of D3 vitamin daily and it hasn't yielded any results. I also take a very high dose of l-methylfolate and B12, so I'm getting plenty of folic acid.
Hi All l feel all your pain, I have had DIV for a long period only just been diganosed last year properly-after suffering 10 years to be told l had thrush or std treated with antibiotics l did have trichomas intially though cleared up after many tests told l had to much Strep, sheding white blood cells, tired lots of things, including going off the pill....sadly it made no difference, mine is now managed by Dalacin V Cream...seems to be only cure although my specialist said pregnancy can make it go away mother nature sure has a lot to answer for how can you when its that painul to do the deed in the 1st place....so horrible as l'm only 39, makes relationsips incredibly hard. I got desperate and tried seeing naturepath, initially it worked, then found before or after every cycle had bad infection, tried lowing my sugar no result, at my wits end with this, told l've got it for life....if anyone has any other bloody clues...let me know.....depressing:( sometimes just get anrgy want to cry, partners can't cope.
Hello everyone- Nice to know I'm not alone. My symptoms started after a yeast infection, then I had a staph infection, and now my doc said Div. she told me to use acidophilus probiotics vaginally. Hopefully it will help. If not I will call her and ask for some steroid cream.
This started for me on April 25th and I have been going through it ever since. At first I was treated for bacterial infection. I saw 5 doctors. I was put on Cephelexin by the last Gynocologist and it worked and I felt great. But then it came back. So she doubled the dose and put me on it for 2 weeks. I felt great again. But it came back. Then she sent me to the University of Washington. I was diagnosed with DIV after the antibiotics wore off and they could get good samples. I was ecstatic I finally knew what it was. The Doctor placed me on Clindamycin and said I would feel better within a week. I thought I was going to be cured. WRONG! I am now on day 17 of Clindamycin and it has done nothing, infact I am worse. The itching, irritation, and discharge are unbearable. After E-Mailing Her, (Doctor) twice and telling her this med is doing no good she asked me if I wanted to go on compound steroid cream. I'm not the Doctor why is she asking me. After reading all these posts I started crying. It sounds like there is no hope. My husband and I have had sex like 4 times in 5 months. The UW is going to be doing a study in 2 month to find out what causes DIV. That gives me some hope.
Just so you all know Doctors do not know what causes this yet. That is why the University of Washington is going to do a study to find out. I am going to ask to be a part of that study if I am not cured by then. And it sounds like I won't be. This came out of the blue for me. I am 51 and haven't had any problems. I just thought it was yeast infection at first but I usually only get one of those when I have taken antibiotics. The Doctor at UW said' "a normal lab never would have found this." You see she does the exam and takes the samples and tests them herself immediately. She knew exactly what she was looking at and drew a picture of the cells on paper for me. The difference between BV and DIV. Because I was diagnosed with BV prior to this. Those UW Doctors are smart. If you want some relief of this for a couple weeks ask for cephelexin. You won't be cured but you will get some relief for a while.
wondering if any of you have found some relief.
Ive been iagnosied with desquamative inflammatory vaginitis after suffering with ridiculous amounts of discharge for the past year and a half ( you can go through my previous posts).
Occasionally my swabs would show yeast, but not much else. MY ph is usually alkaline about 6.5, but no abnormal bacteria, an sometimes no lactobacilli. Most of the time there are no white blood cells either, suggesting no infection.
I recently had a biopsy an it showed inflammation down into the deeper levels of the vaginal epithelium, desquamation an thinning of the vaginal walls. I did a months worth of clindamycin but ended up with a yeast infection and as soon as treatment was finished the discharge came straight back.
I tried boric acid but the amount of watery discharge it produced was just horrific and I couldn't bear to continue. It was literally like I was weeing out of my vagina. I also find this "watery" feeling happens after sex. , but most of the time the discharge is thick, white, slightly yellowish and in huge amounts.
Im currently trying a months worth of clobetasol and clindamycin cream every second day.
Has any one had an success with any other treatments or the vitamin d theory? my vitamin d levels are within the normal range but id still like to hear if anyone has had success with this.
Hi all new to this discussion!
I just visited
Dr. Fowler in Scottsdale AZ. I drove from LA to him
Because I wanted the in person visit. You can send a sample to him for 120.00. I paid the 120.00 for lab results and 250.00 for visit on top of meds and other treatment products.
He is one of the only doctors here in the US that have special microscopy and the knowledge to tell you what you have. The only problem is I am distrusting and this area-sexual health in particular women's vaginal health is extremely new and still evolving-they really don't know ****. The plus side of Dr. Fowler is he attends the world conferences, seems to have good general knowledge (we can go back and forth with his expertise and my
Insane research for the past 5 years) and publishes articles frequently and regularly. I have a more holistic approach and need for the root and cause and proper ailment while he well he's an MD what can you expect. I am putting my faith in him.
I have IV not DIV. The maturation of my --- cells were in the middle.
Women at my
Age should have the fully matured --- cells. Apparently my vaginal receptors are not taking in the estrogen I am
Producing. So I have white blood cells it was 13-24 count, there should be none. My body is preparing to fight off an infection I don't have. Because I am
Not getting enough estrogen in the vagina there is not enough of lactobacilli good bacteria in my vaginal flora pattern. This is from what I understand. So these white blood cells die off every 2-3 days and release toxins. These toxins can cause a bad odor and vaginal discharge that is unfavorable. MY pH is 5. Neg for trich. I notice I have more frequency to urinate and have experienced vaginal bleeding/spotting in between periods in the past 2-3 years and have never ever had this happen before since I started having periods at 13 or 14, can't remember.
Anyways in past when I used Gy-Na-Tren before which are boric acid pills, org coconut oil, reuteri oral probiotics, grapefruit seed extract oral vitamins, b/d/e vit, folic acid, and go live probiotics things seemed to be perfect.
Except after sex after a few days I would shower and swab to see unfavorable discharge. I have pain with sex sometimes but it's not a dry issue it's prob a cervix issue. Thought I may have PID or endometriosis.
Still unknown. Went to original doc and my pap came back for BV.
So finally after dr fowler apparently normals docs or Obgyns don't know ****.
Hopefully he knows a little more. I am
Trusting he does altho reading all the forums on the Internet gives me little hope.
Now I am on cleocin ovules, terazol and e1/100mcg e2/60mcg combo which is estradiol and estrone. Knw your stuff! Also my diet is not perfect. But you all should cut out carbs, gluten, alcohol and sugar. Basically eat 100 percent clean and non processed food, obviously no soda ever, if you follow that and still no results id be shocked. I don't follow the perfect diet but I try and know when I need to start on it. I use grandmas lye soap, vanicream lotion and cream bar and this wierd solution stuff you're suppose to use when you pee which to be honest I have not tried yet but he reminded me to today. I also smoke cigarettes and wear thongs everyday. Except right now I'm not. You do what you can. Luckily my symptoms are a 3/10. But I want it to be perfect and normal is that so much to ask for? No.
We need that as women.
Together we can do anything.
Lets see how it goes. I'm on a mission to develop my own fem care line and facility so no woman every has to feel less than perfect. Well all be above and beyond.
Working to put my
Id like to mention I used to have irritation and inflammation and itching in the past. I still feel a rawness sometimes
After sex and inflammation. It just depends. I am most against any discharge and smell which can cause all those things. I also see Dr Hank Williams in Laguna beach who is amazing but very holistic. I like to get every end. I've tried everything. The grandmas lye soap and vanilotion have mentally been working wonders!
So now I'm more on the med side. I'll update on how it goes and my final conclusions. They say it takes up to 4 months. At the end of the day how we feel and microscopic pics and knowledge (facts and results) is all we can base anything on.
Please everyone continue sharing!
Read your posts. I also saw Dr. Fowler earlier this months and was diagnosed with inflammatory vaginitis, vulvodynia, dematosis, ang lichen sclerosis. He put me on all the hypoallergenic products, as well as estrogen suppositories, progestin oral, vanicream with 2.5 hydrocortisone, metronidazole vaginal gel and terconazole suppositories. He told me I wouldn't have any improvement for four to six months. I wanted to check in with how you're feeling. Chiaramia
I have Desquamative Inflammatory Vaginitis and Lichen Planus.
Here is what works for me:
1) understanding the condition
Apparently many doctors believe DIV is an internal symptom of Vulvar Lichen Planus. If you have DIV, you may benefit from Clobetesol cream (a steroid that helps with skin cracking, burning and itching) and Hydrocortisone Suppositories.
I encourage all of you to do as much research on DIV and lichen planus as possible. Ask your doctor to print out information for you from uptodate.com, a website used by doctors.
2) Finding a regimne that works for you
When I am having a "flare up":
- I take long soaks in a warm-hot tub of plain water each day after I shower.
-After the bath, I pat dry with tissue and apply Clobetesol cream to red areas.
-I also insert Hydrocortisone 25mg suppositories twice daily during a flare up of symptoms. You will need to lie down for about 20mins after inserting to ensure that it doesn't immediately leak out. You should also wear a panty liner.
-****Most importantly, I take 4-5 probiotic capsules made by RePhresh ProB daily. I buy them at the drug store.
When my symptoms have subsided:
-I stop the Clobetesol and Hydrocortisone.
-I continue to take warm/hot baths frequently
-I take RePhresh ProB probitotics daily and sometimes insert the RePhresh ProB vaginal suppository to promote healthy pH
3) Don't ignore early symptoms
I recognize that the first symptom prior to a flare up is itching around my clitoral area. As soon as I notice this symptom, I take additional ProBiotic pills, a RePhresh ProB vaginal suppository, additional soaks in the tub, and I begin Hydrocortisone suppositories.
I hope this helps you. When my symptoms flare up, they subside within a week if I follow my regimine.
I am a 32yr old mother of two. I have been suffering from episodes of intense burning and discharge for years now. I'm currently having an episode that began about 8 weeks after giving birth to my daughter. I have never been able to figure out what was wrong with me but DIV sounds like a big possibility. In the past I thought I was allergic to pads, soap, underware. I have a lot of discharge that ranges from cloudy and watery to thick like rubber cement. The discharge feels so acidic like it's burning the area near the opening. I try to wash it off as many times as I can to get relief but it only take a bit of the burning away. I fee like I'm missing layers of skin on my labia and they fee raw. The doctors have tested me for yeast and BV and frayed me for them even though the test results are always neg. I recently tried Relagard to balance the ph but it didn't work. I've tried probiotics, Caligula and Difulcan. Nothing helps. I'm not sure why my symptoms subsided in the past. Each episode lasts for months. I was fine during both pregnancies but had episodes afterwards. The doctor treats me like I'm crazy and like im bothering him. I'm looking for a doctor near the Los angeles area who is familiar with DIV and that can help me. PLEASE!!! I'm ready to pull my hair out dealing with two small kids and working full time. I don't know what to do. I recently started the mini pill to try to regulate my hormones even though dr said they are normal. Last ditch effort I guess.
I am 45 years old and I also have inflammatory vagintis. Also can be called atrophic vagintis. There is no cure and doctors cannot explain how it is brought about. My doctor says most women get this after menopause but I haven't had menopause yet. I find that what helps me is washing my vagina area with Aveeno sensitive skin body wash and Replens lubricant. The body wash is inexpensive but the lubricant is around $20 a bottle. I hope this information is helpful to you all.
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