Oh, you poor dear, I cannot imagine...the whole glass thing...that is awful.
I also have an autoimmune desease, so I know what you mean by glad to have an answer, but.....

If there isn't a group on the boards, join another autoimmune one. Rheumatoid arthritis is misnamed, because it is autoimmine, and extremely painful, and we would be happy to have you in our group. Sarcoidosis (sp) is auto immune, and I don't know how many others. So, please, look around and join a auto-immune group.

Best of all possible luck to you

Hi
I have suffered with Desquamative Inflammatory Vaginitis for almost three years now. I have been on the Clindamycin treatment on and off and have now developed an allergy to it. I have worked out with a naturapath a program where we control the symptoms - they do flare up every now and then, but with the herbs and probiotics I usually don't have the inflammation or the burning. If you don't have a naturapath, you can try some home remedies that might bring relief - natural yoghurt on a tampon helps and if you can get hold of a cream (Weleda nappy rash one works) with zinc and calendula oil - it takes away the inflammation. I find that any alcohol or spicy food aggravates and I also need sleep. Incidentally my gynaecologist referred me to the naturapath saying they have had good results. Hope this helps - I absolutely understand how you feel.

I was diagnosed with DIV 2 years ago. I see a specialist across the country 3-4 times a year. I have been on clindamycin/ hydrocortisone treatment as well as estrogen for 2 years. This has not cured anything. If i am not on this medication, all symptoms are present shorty after stopping the medication or lowering the dosage including: discharge and pain. I am not the type to post online, thus my incorrect spelling of meds, but I believe the more women that speak up about this, the more can be researched and figured out. I have had this for 10 years but have only been diagnosed 2 years ago. You can imagine the run around i have had to deal with from various OB/GYNs. I am currently 27 years old and cant hold a relationship or find a cure. In desperate need of a support group and cure!!! Please share similar diagnosis and progress/regression and so forth.

I just now found your comment 4 years later, but I'm sure other women are suffering from DIV. To make a long story short, about 3 months ago I was experiencing increasing soreness around my vaginal area, plus pain similar to a urinary tract infection. My vagina felt sore, burning, and very, very uncomfortable anytime I had to sit straight up, such as when driving or attending a play. My doctor had me apply hydrocortisone cream (which helped) for 10 days till I could get in to see my gynecologist. My gyno introduced me to the concept of desquamative inflammatory vulvovaginitis. She prescribed Clindamycin cream to be inserted with applicator into vagina nightly for 4 weeks. Yuck, but I wanted to be healed! The clindamycin helped somewhat, but my gyno still saw inflammation at my 2nd exam, and I was still feeling pain. Last, she prescribed Premarin cream .625. I had to apply a pea-sized amount to vagina entrance 3X per week. I should mention that I'm already taking Premarin .45 orally, and my gyno didn't want to increase this dosage. So - I've been using the Premarin cream for 2 weeks now, and DEFINITELY I'm healing. I can feel discernible improvement each day. Wow, I'm so happy! If you research DIV, you will see that the 3 treatments of choice are hydrocortisone, clindamycin cream, and estrogen. Unfortunately, I think I'll have to remain on the Premarin cream forever. But - it's preferable to the pain I was experiencing.

I was diagnosed with DIV 4 days ago. I was prescribed the 4 week treatment with Clindamycin vaginal cream. I haven't talked much yet to the Doctor because it took him awhile to figure out this diagnoses. Then our time was up. There will be a follow up in a month. I had no idea this was a potentially long term problem until looking it up online! I am 70 years old and have had vaginal infections at times over the years but I had no idea anything like this existed! This first week on the antibiotic I find I run out of steam quite a bit. Is this what happened with you? Does this fatigue continue? At the moment I don't know if the tiredness is due to the DIV itself or the treatment or both!? The burning, itching and discharge have seemed to stop. I would appreciate knowing what others have experienced. I wish you all well in your healing process!!!

I was diagnosed with his formative inflammatory vaginitis about 3 weeks ago. I just finished the course of clindamycin and started on hydrocortisone. The itching is driving me crazy at this point. I get the best relief from itching by sitz bath. I also use some calendula ointment and take several oral medications for allergies. I have also been reading about this condition and has been discouraged to see that only about 25% of women are ever cured of the disease. I would like to know if anyone else there has experienced cure

Hello,
Not sure if anyone is still in this thread!
I was diagnosed with DIV a few months ago. I've tried the month of clindamycin but this actually worsened the irritation and symptoms and hasn't helped! I'm praying that hydrocortisone will do something for me! Would be great to know how anyone is getting along with treatment, or if anyone found irritation with the clindamycin!
My main symptom is stabbing pains inside and also a lot of very uncomfortable discharge. :/
I also went to see a great vulval dermatologist a week ago. She said I have developed a vulval excema as a secondary symptom. She provided a steroid cream which works a bit. But the only thing I've found which really feels like it helps the outer skin is in fact Anusol cream for hemmeroids!
Thought it was worth mentioning as I only came to this realisation from trying lots and lots of different things! Xxx

Hello Everyone,

I am very happy to have found this thread. Has anyone done a biopsy? Apparently DIV is a precursor to Lichen Planus or Erosive Lichen Planus. I was recently biopsied and it showed up as Lichen Planus. This means that the vulva as well as the mucus membranes are inflamed causing that crazy discharge. Unfortunately, the steroid ointment did not work for me (clobetasol) and made me itch even more. It was way too strong. Perhaps an antifungal/hydrocortisone ointment would be better? Ointments are preferable to creams- however, that is great that the premarin cream worked! I heard that Emu oil, coconut oil and any other mild barrier cream can help the skin and possibly prevent further damage.

If the doctor hasn't done so already- get a biopsy if you have continuous skin involvement, get a sensitive vaginal culture (SureSwab) and see what bacteria is causing the overgrowth. Then, somehow we have to replace the Lactobacillus to prevent the yucky stuff from coming back. However, there aren't any options for us other than probiotics which have a hard time migrating to the vagina. UCSF is doing a Lactin-V study which will take a few years to come to pharmacies. This is a vaginal suppository of lactobacillus.

I am going to try the clindamycin although it seems from these posts that it really doesn't stick. According to a vulvar specialist, the ovules can be used every other night for 14 days. Did anyone react negatively to the clindamycin with gut issues/yeast overgrowth? A month of clindamycin seems so drastic!

Hello,

So my doctor thinks I may have a mild case of DIV, but I'm not so sure...

Here's my story in a nutshell: so between January-July of 2017 I had a series of yeast infections, which I finally seemed to overcome by the end of this past summer after taking a double dose of the oral and using probiotic suppositories. After having sex with a new partner in November I got a case of BV for which I was prescribed oral antibiotics, and took probiotic suppositories at the same time. This solved the issue in the normal time frame.

Then in January I started randomly (i.e. not provoked by sex or anything) getting intermittent itchy/raw soreness/ burning feelings down there. I already has an appt. with my gyno to get my IUD replaced and brought up these concerns but she did a visual exam and swab and said everything looked fine so she chalked it up to me being nervous about getting the IUD - which I wasn't very much so I don't think that was it.

Anyways, a week goes by and no improvement so I book another appointment with her and this time she takes my concerns more seriously and concludes that I might have a mild case of DIV -even though I have NO odd discharge whatsoever! Has anyone ever heard of this?

She gave me clindamycin gel, which was bascially 2 weeks of even more pain and burning as it leaked out and no improvement. When I saw her for follow up she informed me I now had yeast! (Maybe my fault from not going on the probiotics this time - MAKE SURE YOU DO THIS if on clindamycin). Anyways, she gave me stuff for the yeast and also hydrocortisone cream to start after the yeast is treated.
I've done a full treatment for the yeast now so I assume that is gone. These past couple days (now 9 days since I took the first of two fluconazole pills) I have mild, but very infrequent sensations of itchiness down there, but overall huge improvement to what it was before. The only problem that remains just as prominent as before is the burning sensation I start to feel a little into sex followed by a severe burning sensation for about an hour after sex is over....
To me this sounds like vulvodynia or vaginismus, and NOT DIV, but I was curious if anyone has experience the same thing. I am so hesitant to do this hydrocortisone cream for a month when I don't feel like it's addressing the real issue and will maybe cause more pain.

Hi Tunes. I hope my story can help. I've was diagnosed with DIV six years ago, after a decade of having frequently diagnosed yeast and bacterial infections - although I now think that some of those were actually the DIV. I would strongly suggest that you try to find a vulvovaginal specialist who can properly diagnose you. That is what finally worked for me. My ob/gyn said that my history of frequent infections led her to think that there was something else at play. The vulvovaginal specialist was able to diagnose my DIV by a few things that are clinical indicators: a raised pH level, a higher than normal appearance of white blood cells when looking at a swab under the microscope, and a presence of something called parabacel cells which are normally only found in deeper layers of cells. Desquamative means shedding, so because of the shedding of surface cells, the deeper cells are found where they shouldn't be. This is a helpful article: http://cvvd.org/conditions/desquamative-inflammatory-vaginitis-div
It sounds like your doctor is guessing and hasn't actually found the indicators for DIV. A vulvovaginal specialist would be the best way to get a diagnosis of whether you have DIV or another vulvar skin disorder. I will say that I was given hydrocordisone and it worked somewhat, but when I'm stressed and run down is when my DIV flares up (I now know), so they increased my dosage and after a while I realized that the high dosage was making me worse and decided to discontinue treatment. I stabilized a few years ago and now only use the low dose 25mg of hydrocordisone when I have a flare up. I haven't had one in years now, but unfortunately am now in the midst of one. My doctor also gave me a prescription for a numbing cream that I still have and use whenever I have symptoms. She told me (and I have found to be true) that the longer my body stayed in pain/discomfort the more familiar the sensation would become and the more readily my body would return to those feelings, like muscle memory. That the nerve endings get used to the painful sensations and it becomes a cycle. Also, vulvodynia is a blanket term for any unexplained vulvar pain (DIV is one of many possible causes) so it seems like you definitely have vulvodynia, it's just a matter of figuring out what the root cause/diagnosis is. I hope this is helpful. I found it to be really overwhelming and scary at first, so hang in there! I have been symptom free (until a recent stress increase) for a long time, after once feeling like there was no end in sight! Take care.

Thanks sea123
It is good to read a positive story...I'm just wondering - was there anything else that you think helped your symptoms? I have now tried hydrocortisone suppositories for 21 days but that seems not to have done very much. The main symptom is just a constant burning....
thank you! Xxx

After over 10 years of suffering I was finally diagnosed with Desquasmative inflammatory vaginitis in April 2018. It took me years just to find a doctor who would listen to me. Unfortunetely I have an allergic reaction to Clindamyacin and can't use it and the compounded hydrocortizone cream did nothng to help me. I am very in tune with my body and for me personally, I only have problems when I eat anything with sugar or carbs. I have had to give up bread,pasta, fruit and anything with sugar. The keto diet suits me perfectly though and over this past year I have learned to eat in a way that will not cause flares.Through years of watching how my body reacts after eating certain foods I have learned what I can eat and what I can't. As long as I eat right I am fine but if I cheat and have bread or something that triggers a flare I start getting red and irriated again. This is the most dificult part. I miss good food! I wish there was a cure for this so I can resume a normal diet. I read an article about a Dr in Washington that successfully cured several people who had suffered from DIV by performing cryotherapy on their cervix. They froze the cervix for a short time and killed off the cells on the cervix and each woman reported no further symptoms even 34 months later.I am planning to email this article to my Dr to see if she can try this on me. It's worth a try.

Hello- I was diagnosed with DIV about 4-5 years ago. I’m 38 years old and have 3 children..
I’m currently in a flair on steroid suppositories. No relief yet. Anyone else feel UTI type symptoms when in a flair? It’s like the entire area down there burns. Feeling like if I pee, I might find relief?
I read tonight that DIV should be confirmed by a biopsy....that has never even been offered to me. I’d love to hear more about the numbing cream someone on this thread said their dr gives them! That sounds amazing right now. Had sex with my husband last night and it was soooo painful. And today has been so sore and burning all day. Anyway, hoping for some feedback. I’m glad to have some other women that understand how hard this can be.

Is this still an active thread? I was just diagnosed with DIV as well and seeking others who have the same for support and to compare experiences.

Oct 2020, I had sex for the first time in 19 months. I had no issues nothing. A few days after having sex, I started to feel off. I went to the dr to get checked and they said I had a yeast infection. I took the medication, but didn’t feel better. Then, they said I had BV. I took the medication and didn’t feel better. This went on for 10 months. I went to about 7 different doctors & nobody had a clue. Then, they said maybe it’s my normal feeling. I told them there is nothing normal about having a burning/itching sensation in your vagina. My normal feeling is feeling nothing at all!! I learned that most OBGYN’s aren’t specialist. I had no idea a specialist is a vulvar dr. I thought vagina dr’s were specialist because they know about the vagina. Go figure. Anywho, after suffering for 10 months with mistreatment, someone finally said I had DIV. I never heard about it & they should honestly mention it more when people say they have a itch down there. I was given clindamycin for 6 weeks, but it gave me yeast infections. I was given hydrocortisone 25mg suppositories and it made the inflammation go down. However, I still have burning sensation. The dr also gave me estrogen cream to use 2x a week, when I’m done with the hydrocortisone. I’m going to try it & see what it does. I’ve been having symptoms now for 16 months straight and I just want to feel like me again. I’m 28 and I want to be able to have sex again, but maybe it’s not even worth it because I started feeling off after I did.
I was reading online someone used tacrolimus 0.03%, so ima ask my dr for that next time. And someone also used clobetasol 0.05%, so ima ask for that too. I’m willing to try everything.
I also want to try the cryotherapy, but the dr told me it’s only for cancer patients. But I might have to fly out to Washington for it.