[amelillo13]

Did the doctor who gave you the steroid also treat you with clindamycin while you were on the steroid cream? I know that the typical treatment for DIV is a combination of hydrocortisone suppositories AND topical clindamycin cream, so the hydrocortisone by itself may not do the trick.

I'm in the middle of a mystery battle as well (been at it for 2 years--read through my posts if you're interested!) and I finally have an appointment with a specialist this month who will be able to (hopefully) confirm it's some sort of dermatological issue--but DIV may be related to dermatological conditions and I have never been treated for it, so I've been reading up on it a lot lately and I know the treatment usually consists of more than just one thing.

I've been on clindamycin numerous times, but not at the same time as the steroids. the doctor felt like there was no reason to do them in conjunction...I don't remember his reasoning. I think he felt it would be too much since I had seemed to respond to the clindamycin in the past, at least a little, and he felt it was because it has stronger anti-inflammatory properties than flagyl (which I've been on about 7-8 times and I refuse to take any more). One or two times when I was on clindamycin cream it seemed to help, but as with most meds I've been on, as soon as I go off, the symptoms return.

I was recently put on clindamycin again, after being on other things for a few months, and I did not respond at all to it...so...that's also kind of a problem. I've been over medicated and it's probably becoming resistant.

My doctor just prescribed me boric acid which I will be trying in a few days. I've heard nothing but good things about it, so hopefully it'll end this nightmare for me!

[lafemelle]

Well good luck, and please keep us updated on whether or not the boric acid works for you! I've actually done several treatments of boric acid and it never once helped, but then again if I have a dermatological problem going on like my doctor thinks I do then the boric acid obviously wouldn't do much to help me!

[Raychelc]

Ladies, I hope my story helps someone. I was thinking about this the other day and wish I had the internet years ago when I was plagued by a similar problem.

I had a vaginal infection for about 3 years. The only time I had relief was when I was pregnant with my second son. After he was born, it came back.
I went through all of the gynecologists at the HMO I belonged to in Buffalo. Every vaginitis treatment they had, I tried....antibiotics for me and my husband, cryosurgery, etc. They finally gave up on me. They said, "We don't know what is wrong with you." My husband (and I am glad to say he is my ex-husband, now) accused me of not wanting to have sex with him. It looked like someone had taken a Brillo pad to my privates, and I told my husband that he could ask me to prove it any time, day or night. I also had a discharge.

I moved to Raleigh in 1995, and I joined up with another HMO here. I told the doctor all my symptoms, and he actually had another patient with the same ones (hallelujah, I wasn't crazy!). This angel (Dr. Hall) called me one day to say he went to a symposium (or wherever doctors go), and he sat in on a presentation on a lark because he thought maybe this is what I had. The presentation was on desquamative inflammatory vaginitis which is an overabundance of squamous cells. I am no doctor and might not be describing this properly.

Anyway, there were only 2 treatments that he offered, and since I had already tried the one with pills, I tried the other which was to use some hemorrhoid medication (like procto-foam or something). I wish I could remember what it was called. Anyway, the applicator wasn't right, but the doctor said "just make it work." It took 2 or three rounds of treatments at 2 week intervals, but it never came back since. That was about 12 years ago.

If you think this is what you have, I can try to locate the name of the medicine. I read online that there are other treatments, also.

I just hope I helped one of you. I suffered so many years alone.

Leslie

Leslie,

You may have just helped me..I hope.

Over a year and a half ago, I had a new boyfriend (still have him) and we unfortunately went into his hot tub one night, and..you know. Very next day I felt I was getting a bladder infection, so when that didn't get better after another day or two, I went to my Ob/Gyn.

She swabbed for yeast, bacterial infection, STDs, and did my pap smear. Waiting on results, she put me on Diflucan. Not sure why, as I had no itching or discharge, but she suspected yeast. Well, ALL results came back normal. I still didn't feel better.

We ran more tests, and even did a vulvar biopsy, which was not fun. The biopsy came back normal, too.

My major symptom is intense burning and redness/irritation. I don't wear pantyhose, use scented soaps, etc etc..I don't even wear underwear anymore due to the agony.

I haven't had sex in months and months, and can't even bear to think about it. My symptoms are constant, 24/7, and don't need to be provoked. Sitting, showering, walking etc all makes it worse, though.

My Ob/Gyn did a second biopsy just a month or so ago, this time in 4 sites, and also ran blood tests. Every single thing came back normal. I'm negative for skin disorders (such as lichen planus/sclerosis)
I'm not diabetic.

I'm 118 pounds, so we didn't really think I had uncontrolled Diabetes, but it's always good to check.

Reading your post, I actually sent it to my Ob/Gyn through e mail along with a medical study I found on DIV. Lord, I hope that's what it is..although I have been on so many drugs and antibiotics, you'd think it would have solved the issue even if we didn't know exactly what was going on.

I am planning to do a vaginal ultrasound in the next two weeks to check out the internal organs, and possibly look into Ovarian cysts or something, but this was my idea, and me grabbing at straws..my doctor doesn't think that's what it is. But..I am hoping the ultrasound will show it if I have cervical cysts, or any other issue we could have missed.

I have, to this day, never tested positive for a yeast infection, and I'm 32.

What I don't have for sure:

Yeast infection
Bacterial Vaginosis
STDs, including HPV
Allergies to soaps or detergents (I use only clear, hypoallergenic products)
Allergies/reactions to semen (4 months of NO sex confirms this)
Abnormal Pap results

Medications I have been on without any success whatsoever:
Diflucan (recently, and at first, several doses)
Clindamycin (recently)
Doxycycline (recently)
OTC yeast creams (recently) Not sure why we keep treating for yeast infections I don't have.
Neurontin (When a specialist thought it was nerve-related)
Amytryptline/Bacoflen creams inserted vaginally (current)
Lidocaine/Estrogen cream, inserted (current)
Oral Amytryptline (Elavil) -This one caused horrid side effects and made me gain 20 pounds, which then took two months on a strict low carb diet to lose. Still on that diet 6 months later, actually to maintain weight loss.
Cymbalta
Oral Steroids in short courses
Steroid creams
Zoloft
Vaginal suppositories made of Valium

I'm suffering big time, and do not get one moment of relief or peace from this. Every moment of every day, I'm in serious discomfort or even pain.

I have noticed what seems like narrowing of the vagina..which made sex all the more painful/difficult.

I still have almost no discharge. Only when I'm cleaning up in the bathroom do I see it, and it's thin, mostly clear with a slight yellowish tint. Not to be gross, but it looks something like snot.

I never feel this discharge at any other time, and have not seen it in my clothing even once.

My doctor sees redness/inflammation, but says she sees no discharge and detects no odor.

I'm at a loss, here, but I hope your post steered us closer the right direction!

Thanks SO much for posting.

Raychel

[boriborque]

Vaginal burning

I have been experiencing vaginal burning for the past 3 months. It began when i iserted a tampon that had fallen an i inserted it thinkin it wouldnt harm me. I began to feel real irritated and self diagnosed myself with a yeast infction. I purchased two seperate creams that didnt work. I decided to go to the dr.'s and they gave me diflucan whch relieved my symptoms but 2 weeks later the burning began again. I self diagnosed myself again inserting vaginal yeast cream and the ph level results came back a low 4.0 which indicated ph levels were unbalanced.
I went to the dr. again i was prescribed diflucan she diagnosed me with reoccuring periodical yeast, which is a yeast infection may result before or after a menstral period. After the third day i continued the burning sensations around my vulva area and enterance of the vagina. I have also been experiencing at times that my vagina is a bit too moist and it irritates me. I had this problem when i was pregnant and the Dr. said it was because of the hormones, but i am not pregnant and my tubes are tied for the past 3 yrs. I was tested for STD's ( HIV, Clamydia, Trichomonis and Gonorrhea are negative).
I went to the ER and they diagnosed me with a UTI and a mild yeast infection. Ive noticed if i use soaps, toilet paper and even my panties are to close to my vulva and vaginal the burning begins but not as bad as it has been in the past. When i urinate and the urine drips from my urethra and slides off my vaginal i also feel the burning sensation. It's getting to the point where i am embarressed by this problem. Im not sexually active for the past 4-5 months. What can thios be? Should i try and get retested for STD's? PLEASE HELP!!

[Raychelc]

Update! I saw a specialist in Phoenix (drove from Los Angeles) at a specialized vulvar clinic, and he diagnosed me in a snap.

He says I have seborrheic vaginitis along with Vulvovaginal Atrophy. I'm only 32, but he says sometimes infections, prolonged inflammation etc can cause this by altering hormone levels and messing with your estrogen levels.

He prescribed:
Lidex cream
Estrace cream (to be inserted twice a day, 3 times per week and topically every night at bed time)
Nizarol shampoo to wash the area.

He diagnosed this in like half an hour...whereas I had spent 21 MONTHS going crazy and having every test known to man to figure this out!!!

I hope this helps someone.

[itchy]

hello ..wow i have been dealing with chronic vaginal itching for 14 months straight.....all negitive STD and yeast and even did a vulvar biopsy. The biopsy came back normal, too.just showed irritation

My major symptom is intense burning and /irritation. I don't wear pantyhose, use scented soaps, etc etc..no jeans no tight clothes..it reuined my life!!!!! are u doing better?

[Raychelc]

hello ..wow i have been dealing with chronic vaginal itching for 14 months straight.....all negitive STD and yeast and even did a vulvar biopsy. The biopsy came back normal, too.just showed irritation

My major symptom is intense burning and /irritation. I don't wear pantyhose, use scented soaps, etc etc..no jeans no tight clothes..it reuined my life!!!!! are u doing better?

Not yet, but the specialist thinks that my vulvar biopsy reading missed something. He says that most pathologists "have no idea what they're looking at" when it comes to these kinds of slides. So, I sent him the reports, and he is going to obtain the slides from the lab then send them to his specialist pathology lab who deal with almost nothing but vulvar issues.

He thinks Lichen Planus could have been missed, and I do have a lot of those symptoms. Burning, irritation, redness and inflammation, tiny little bumpy looking raised bits on the skin from the inflammation, discomfort peeing, etc etc.

I don't want it to be Lichen Planus as it looks like something they manage but can't cure, but on the other hand, a firm answer would be nice.

So far, he has diagnosed me only with Seborrheic vulvovaginitis, which is a skin rash basically to be treated with special shampoos and Lidex ointment, and with some vaginal/vulvar atrophy probably from the long time inflammation.

He seems to think it's an autoimmune response..that whatever happened at first spiraled and went untreated for so long that now the immune system is attacking the skin in that area, both inside and out.

The scary thing is Lichen Planus can cause scarring, narrowing of the vagina, and blistering both inside the vagina, on the vulva, and even on the bladder, hence the discomfort there and at the urethra opening.

Not good news. They normally treat it with hydrocortisone inserts to be used overnight, steroid cream, and sometimes oral steroids for short periods.

For now, he is putting me on a short course of oral steroids..the 5 day pack. I have done that before with some temporary relief, and won't be on it long enough to have side effects.

You may want to find a specialist in your area, and have them review your biopsy to be sure it's properly read and that nothing is being missed. I found mine in Phoenix..I live in Los Angeles area, so it's a long trip, but worth it if he can help.

I hope you feel better soon.

[itchy]

Wow..what is funny is I am 32 too... I was on that oral steriod pack for a week and felt good for about a month staight and then..GUESS WHAT... it was back...I have been to 5 differant drs and nobody has a clue???? I have been on steriods,pills creams,allergy meds...nothing works...I have read so many stories like ours and nobody gets cured with medical treatment...It is something that will have to go away on its own...i have been to over 30 doctors visits 2 ER visits and NOTHING ,,,my moms friend had the same thing for 2 years straight then it just went away on its own...I think its hormonal..another lady had it for 3 years and they only time she felt good was when she was pregnant....THey dont even have a name for our condition..did they creams you got Lidex cream help any???please let me know if you get cured I have really Given up I live in a big city Houston..and there are no specialized vulvar clinic and my...keep me posted please hope u get better.....

[Raychelc]

Yeah, I know. I have been to three separate doctors so far, two of them specialists. My regular OB/Gyn tried all she could with swabs, tests and medications, and nothing. The Lidex cream does not seem to do anything, no. I feel my symptoms sound a lot like DIV (Desquamative Inflammatory Vaginitis) or Lichen Planus as I have had lesions and blisters that were biopsied and removed with no result other than 'inflammation'. Thank you, Captain Obvious Pathologist!

My most recent biopsy was a couple of months ago and was horribly painful so I am hoping the Vulvar Specialist can review the actual slides from that and find something definite.

The bad news is Lichen Planus is not curable, they can only manage the symptoms, so we'll see what happens.

I have tried it all, too! Believe me, I feel your pain, and every woman's pain with a story similar to ours. There is nothing worse than having constant, unrelenting, Hellish symptoms only to be told "I don't know' by every doctor you see. The new guy is telling me not to worry..we'll figure it out, but of course that's easy for him to say, and hard for me to believe in after nearly TWO YEARS. of this.

I cannot sit, shower, sleep, walk etc with any kind of comfort, and my love life? Out the window. I am not able to have sex, and don't even want to think about it, so life sucks a bit for my boyfriend but luckily he's been very patient and understanding with only minimal whining.

Try to find a place near you, and if you can't..go to my specialist in Phoenix! I know it's far, but how long do you want to suffer? It could be an autoimmune disorder..Lichen Planus can.

Get tested for Hepatitis C...unlikely, BUT..some who have Lichen, have Hep C and don't even know it because it has no symptoms. It's one possibility. I tested negative, but we did check just in case because I used to work as an ambulance medic.

Healthcare workers can get it..it's usually through blood contact, though. If you have tattoos..piercings..any chance you may have it, check.

A biopsy will find Lichen Planus and other disorders but an expert has to read the slides in order to see.


Call my specialist's office..maybe they can refer you to someone closer.

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[itchy]

are you feeling any better..wow i have been dealing with chronic vaginal itching for 14 months straight.....all negitive STD and yeast and even did a vulvar biopsy. The biopsy came back normal, too.just showed irritation

My major symptom is intense burning and /irritation. I don't wear pantyhose, use scented soaps, etc etc..no jeans no tight clothes..it reuined my life!!!!!