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Inflammatory Vaginitis

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.
62 Responses
Avatar universal
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.
Avatar universal
Hi-
  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.
Good luck!
Rebecca
2 Comments
Hi Rebecca. Did you manage to resolve your DIV? If so, would love to know how. A dear friend of mine was recently diagnosed and tried everything you had described without success.
I’m wondering too, I’m in the same boat as you. Did you ever cure it?
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Avatar universal
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.
Avatar universal
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/"
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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!
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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.
Avatar universal
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
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Avatar universal
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.
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Avatar universal
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!!

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Avatar universal
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.

TT
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Avatar universal
I was prescribed 50,000IU 3 times a week. Don't think you can get that OTC.
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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.
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Avatar universal
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.    
Avatar universal
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.
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Avatar universal
did this work? very intereste to know.
please reply
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Avatar universal
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!
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Avatar universal
I was also wondering how you girls are doing.  I just got diagnosed with IV from Dr. Fowler.  Progress anyone?
Avatar universal
Hello girls! For almost 8 years I have the same problem. Does anyone have progress with witamin d treatment? I've just strat with vitamin d but no improvement yet.
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Are you still suffering?
Avatar universal
You still suffering?
Avatar universal
Try Dr. Donna Richey, an obgyn. She knows about DIV. Good luck!
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Avatar universal
Is there any new treatment?  I think this may be what I have...
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