Cronic Vaginal Pain and Inflamation

[Cait1284]

I'm a 25 year old female, and for about the past 4 months, I've experienced continual vaginal itching, labial swelling, and general discomfort.  I have been tested for every STD repeatedly, as well as bacterial and yeast infections.  My boyfriend (of over a year) has no symptoms.  My doctor diagnosed me with desquamative inflammatory vaginitis since my vaginal tests came back positive with white blood cells and strep.  I have been on an estrogen/hydrocortison suppository regime for about 2 months, but my symptoms still persist.  Thoughts?  

[laurita_s]

Hey all.
Man, it's great to finally find a community of women who are experiencing some of the same symptoms. this condition has made me feel very isolated, because I'm 24, close to many of you in age, and I foolishly assumed that because I'm young, things like this wouldn't happen to me.

I have a lot of the same symptoms as described above: vaginal irritation, redness, stinging/burning, weird whitish discharge and of course, I've tested negative for yeast, STDs, etc. I also have a lot of pelvic pain, lower back pain, and stabbing pains in my urethra as well as an urgency to go. Fun times. My gyno has said she thinks I have DIV, but I suspect that I also have Intestitial Cystitis as well. Has anyone here had both together? if so, what did you do to try and help your symptoms?

[Cassandra2346]

Hi!

I have recently been diagnosed with DIV and also been told to avoid sugar/yeast based products. Are you eliminating natural sugars such as fruit as well as refined sugars? Any advice would be greatly appreciated. The lack of cure has been rather disheartening after 2 years of this already. What is the longest you have managed to go without a flare up? I'm really hoping to have a normal life and relationship. I'm only 25 after all.

Many thanks!

[chel10e]

Iam 24 and  was recently diagnosed with DIV as well... I was always feeling like I had a yeast infection and would go see my doctor sometime yeast would be present and other times nothing... I am constantly getting tested for stds. And always come back negative.. it has been hard on my sex life with my boyfriend of 4 years.. my doctor decided this was the closest thing .. but im still not sure I don't have all the symptoms.. my discharge isn't yellow but I do get a lot daily.. the only things I really have is the white blood cells.. and the irritation.. does everyone have all the symptoms or just some??

[leaves14]

Thanks for sharing. Have your doctors considered vulvodynia? Desquamative inflammatory vaginitis? interstitial cystitis?  I still don't have an official diagnosis, but I think I have either vulvodynia or inflammatory vaginitis. I'm in the process of trying to find a gyno that has experience with these disorders. My last gyno didn't and he all but gave up on helping me. Do you know what triggered your symptoms? How long have you been having symptoms?  Well, please stay in touch. I hope we all find answers and relief soon!

[Jay1335]

I have recently been having issues with a foreign infection of the vulva/vaginal area....inflammation, burning, redness and HOT!!!  It was also affecting my bladder. Throughout the last 2&1/2 months, I have been to my Gyne, a Urologist and an Infectious Disease doc. After 4 vag cultures, 3 urinalysis' and every blood test immaginalbe, they have found nothing.They are all baffled to what could be causing the flare ups.  I recently saw a natural MD who specializes in women's hormones.  She tested me for yeast in my BLOOD.  Came back very high. I have to stay away from all sugar, alcohol, and vinegar.  Also, she found out through a saliva test that my progesterone was low. It is what lines the female sexual organs and urethra. If it is low, it could be the beginning of perimenopause and could definitely cause inflammation.  I have more tests to run, but she has put me on some natural progesterone drops.  If I need relief, I alternate 2 Aleve and 2 Tylenol every 2 hours.  Some days are better than others, so I can stand the slight discomfort. All in all, I just want to feel normal again. This has been completely debilitating.  I feel for all of you! Good luck, and I hope this will maybe help you on your search.

[Shannon38]

No. I usually don't have yeast or bacteria. There's been a few times when I did, but for the most part, no. I went back to the pelvic pain specialist on friday and he did another exam, trying to pinpoint the area that hurts me in the vaginal cuff. I have 1 spot, that when touched or hit (like during sex or an exam) really hurts. Its right under my bladder (why he really thought I had IC). Anyhow, he did a really thorough exam, pinpointing the spot. He'd also done a bunch of tests from the last exam to see if I had some sort of strange bacteria or yeast, I don't. So at this point, he thinks I either have some endometriotic tissue in the vaginal cuff, or possibly a neuroma, which can form after any type of vaginal surgery. When I look up vaginal neuroma, it discusses a specific spot of tenderness, which is what I've had this whole time. Why that spot triggers the other symptoms, I don't know. He's going to get my hysterectomy records and check to see if they found endometriosis. In the meantime, I'm taking a birth control pill (crazy huh!), which will treat any remaining endometriosis. I go back in 6 weeks. More than likely, I will be undergoing a vaginal cuff revision, where he will cut out the area that is hurting and resew it. If there's a neuroma, he will find it then. I'm keeping my fingers crossed that he's finally figured it out.

[leaves14]

Do you test positive positive for yeast?  I test negative for yeast, but yeast medicine seems to help me. I don't understand this?

Also, did you test negative for bacteria? I did.

Well, please stay in touch as to what works for you and I will do the same.

[Shannon38]

The pelvic pain specialist really thought I had Interstitial Cysitis, but my tests all come back negative. I dont' think that's what I have. He's doing some more test to see if I have some rare type of bacterial or vaginitis. What I've found is working for me, at least keeping my symptoms at bay anyhow, is I've switched to decaf coffee, I take a baking soda sitz bath when i feel symptoms coming on, I've limited sex to no more closer together than every 3-4 days (my poor hubby), and I taking a regimen of 1 diflucan a week x 3 months. So far, this seems to be working pretty well. I have some days, particularly after sex, when I have a little vaginal irritation, but its been going away. I've figured out that there is 1 spot in my vaginal canal that is very tender. When it's rubbed or irritated, my symptoms flare up big time. Usually after a vaginal exam or too much sex. The doctors says its directly under my bladder, that's why he thought I had IC, but its not. He can't see anything there when he examines me, the tissue looks fine, but there's obviously something wrong or I wouldn't be having the problems I do. So for now, I'm going to keep with the regimen I'm doing. If after 3 months my symptoms come back, then I'm going to ask the doc to let me take diflucan, 1 x a week, or maybe 1 every 2 week, indefinitely. Maybe I have too much yeast in my system. Who knows. It's a guessing game at this point. Oh, 1 more thing, about the DIV, I'm thinking maybe that's my issue too, but only in that 1 spot because the treatment for it is hydrocortisone and clindamycin (vaginal). Every time I have a flare up, it takes clindamycin to make it go away.

Good luck.

[leaves14]

I was just checking in to see how you are feeling? have you found any treatments that have worked for you? Are you still having symptoms?


I am about to finish up a 2 week course of hydrocortisone suppositories. They have helped greatly, but the problem is not 100% better. It's bearable, but I still have some burning and irritation.

I am about to start doing some sitz baths in an herbal mixture an Asian doctor made for me. I have my doubts about it, but I'd try just about anything.


I saw a physical medicine doctor yesterday. She does not think I have vulvodynia or pelvic floor disorder. On one hand that is a relief, but on the other hand it's ANOTHER doctor that doesn't know what's wrong with me. She is going to do some research and try to refer me to a different gynocologist that specializes in unusual cases.

I am starting to think I have inflammatory vaginitis or DIV for short. Have you heard of that? Have you considered that a possibility in your case?  Another reason I think it might be that is the hydrocortisone suppositories have helped greatly and that is one of the treatments for DIV.

Well, I hope you continue to improve. Please let me know how you are doing. Thanks and good luck!

[leaves14]

Is DIV still your diagnosis? If so, how are you currently treating it?  Has your situation improved?

I don't have any urine related symptoms, so I don't think that is it. I have been told I possibly have vulvodynia, DIV, or nonspecific vaginitis.

[Shannon38]

Find you a pelvic pain specialist in your area. You need to be checked for Vulvodynia and possibly Intestitial Cystitis. Do you have the urge to urinate even after you've urinated? Google pelvic pain specialist for your city or area. I've had similar problems for a year and a half now and finally have found someone who knows whats going on.  Good luck.

[leaves14]

how are you now?  still having issues? I have been having similar problems for about 8 months. It has been a nightmare. I am negative for std's, yeast, and bacteria. No one can figure out what the problem is. I think even my gyno has given up on helping me. I am running out of options and hope that this will ever go away. I would love to know what has worked and not worked for other women, so please let me know how you are doing. Thanks!

[j123k123]

I'm not sure what the cause of DIV is but I do know that "healthy" and normal vaginas consist of lots of Lactobacilli to keep an acidic environment. Maybe you can try increasing your dietary intake of Lactobacilli (probiotics) such as yogurt, sauerkraut, kimchi, and other fermented foods. The pill may also upset the the natural pH balance and reduce the number of healthy bacteria in your vagina.