Mystery vaginal infection for 1.5 years?

**amelillo13** · 04-11-2010 11:23 PM

Hi everyone. I'm new to this forum, and boy do I have a doozy of a story. I hope someone has experienced something similar and can help me out because I am absolutely at my wit's end.

This is probably going to be really long, just because a lot has happened over the last year and a half and I want to make sure I don't leave any details out (so thank you in advance for reading)

I am in my early 20s and in healthy condition. Back in January of 2008, I had a UTI for the first time. It ended up being pretty severe because I waited a good 4-5 days before I saw a doctor because I didn't know what was going on. My bf and I tried to have sex but I had so much pain with insertion we stopped. I was peeing constantly and it burned. Then I developed kidney pain and had fever and chills. I went to the Dr. and was put on Cipro. After a week I went back for a check up. The UTI was gone, but the Dr. said I had BV and yeast. I had developed a heavy vaginal discharge, which is still persistent. It has a weird odor, not fishy, I'd describe it as smelling 'sour.' I also had very bad pelvic pain and lower abdomen and lower back pain. The pain took about a year to subside. I'm not sure why it went away, but I no longer have the pain, just the discharge. I was put on many rounds of medications, flagyl, diflucan, clindamycin, etc. I had been on birth control pills for about 2 years prior to this incident, but I stopped them about 2 months after this mystery infection began. I have no taken them since and i have not been sexually active since.

After none of that worked after about 2 months, I decided to go see a gynecologist. The gyno said I had cervicitis and proceeded to do 2 cryosurgeries on me. I was stupid and did not seek a second opinion and went ahead with them. They did not help it at all. I saw another specialist who said it appeared to be BV and put me on more medication. I saw ANOTHER specialist who said she thought it was BV but the tests came back with nothing. She immediately referred me to a vulvar disorder clinic, because apparently they get all the mystery cases. He says the same thing, BV.

I can't remember the name of all the antibiotics I've been on, but the ones I can remember: Cipro (for the uti), clindamycin (2 or 3 times), flagyl (about 6 times), azithromycin, keflex, Naproxen (to deal with pain), doxycycline, diflucan, and was put on steroids for a month or two. There are about 3 more I can't remember. Some of those have been in the pill form, some have been in gel form. I find the gel helps more than the pills do.

The problem here is, most of the doctors I've seen are in agreement that it is BV. However, NONE of my tests show anything. I've had numerous cultures of my discharge sent out and it just grows out lots of WBC. Dr. looks at it under the microscope, the only thing he sees is lots of WBC. I've been tested for all STDs, all negative. I've been to an allergist, negative for that and I had blood work done that came back normal. My iGe level and SED rates were normal. Cultures have been done on the discharge and my urine, nothing but WBCs. Cultures have been done for yeast, anaerobic bacteria, aerobic bacteria, fungi, a culture was done on my endocervix as well as nothing but WBC.

(also, i should add that the first few doctors never cultured, they just looked at it under the microscope, said bv and sent me on my way with a prescription. the Dr. im seeing now has done about 12 cultures and nothing comes up)

Also, I had a papsmear and that came back normal.

I don't understand. Aren't lots of white blood cells indicative of an infection? How do I have an infection, but all the tests show I'm perfectly fine? Wouldn't a level of something in my blood show that I was fighting something off? Dealing with this for so long has really been wearing on me, physically and emotionally. I've become antisocial and very depressed. I've lost weight. My boyfriend has been VERY understanding through this all, and we have lived together for a while since before this started, but we haven't been able to be intimate and I feel so bad about that. I lost my job due to having to call in sick constantly because when this started I was in such severe pain that I could not move from the couch for days. I never told the boss about this problem, so they just chalked it up to me being lazy and let me go. I have a new job now, which is fine since my pain is gone, but that's the toll this infection has taken on me.

I know it's not my fault that this happened, but I can't help but feel bad about it. I've been doing everything I can, seeing all these doctors, taking all these medications, taking probiotics daily (acidophilus) and my multivitamin. Nothing even helps it just a little bit. I feel disgusting

**Sarah001** · 04-12-2010 05:08 AM

I've got a very similar situation to yours going on, started with a uti along with severe pain and redness in the vulva, urine culture shows no infection, vaginal culture shows no infection except the presence of bv. STI checks completely clear, no yeast infection, nothing that anyone can pinpoint except the bv. The doctor I'm seeing now has offered me antibiotics for the bv which I'll be getting tomorrow but she didn't think this would turn out to be the source of the problem, just an incidental finding while she swabbed me for everything else. I've got no idea what is causing mine (or yours I'm afraid) but I just wanted to let you know you aren't on your own with this. In fact during my trawling through the internet I have come across countless women with a similar tale to tell as ours so I don't know what the answer is. Unfortunately the majority of women who post about this never follow up with any success stories, I don't think this is because none of them have recovered, more that they recover and forget about it so there's no helpful advice I can find online.

My doctor wants to put me on low dose antidepressants for the pain but I'm reluctant to do that while there's visibly inflamed skin in the vulva in case a skin infection or disorder goes untreated. I can't offer any advice I'm afraid but I know how you feel.

**amelillo13** · 04-12-2010 03:40 PM

It makes me so sad to come on all these message boards and find so many women in the same boat. It's comforting to know I'm not alone, but it definitely sucks.

Just wanted to add that my vaginal pH has also been completely normal since this began which is another weird thing. Clearly something is wrong. I'd been to like 7 specialists; don't understand why no one can figure it out.

I take these nasty probiotics every day but I don't think they are helping at all. I might try RepHresh. Have you or anyone else tried that? Figure it can't do any harm...but I'm still on other antibiotics so idk.

**Sarah001** · 04-13-2010 11:55 AM

I've been back to the doctor today and she recommended a 7 day course of Balance Activ gel followed by antibiotics if I need them at the end of the course as my imbalance of bacteria is very slight. However my symptoms are far from slight and I've got lots of inflamed skin both on the vulva and in the vagina so she's wondering if it could be dermatitis. We've agreed to give it a month to see if it calms down after the gel and then I'll be seeing a different doctor who will most likely try me on oestrogen cream (I'm 37 shortly and showing signs of hormone changes) and if that doesn't work I'll be off to a dermatologist who deals with the vulvar as a speciality. If none of those work it looks like I'll be on pain control as a last resort. It's a complete mystery why so many of us ladies have these mysterious problems and the medical profession don't seem to have any answers.

I've ordered some moisturising stuff, is that the rephresh? It apparently moisturises the area for a few days at a time so if dryness irritates the issue (it does with me) this should help. I don't know if it's rephresh I ordered, I've forgotten the name!

**LeslieB** · 05-02-2010 03:51 AM

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

**Sarah001** · 05-02-2010 02:24 PM

That's interesting, I for one am curious to know what the medication was even though I will have to try and source a similar product here in the UK. Was it steroid based or something? I've seen a few posts that mention using that type of cream on vulvitis but I'm not sure which particular type it is they mean.

**LeslieB** · 05-02-2010 06:21 PM

I found the box containing the medication! I guess I kept it in case this ever happened to me, again. The date on it is 1997. Here is what it says:

proctoFoam
HC (hydrocortisone acetate 1% and pramoxine hydrochloride 1%)
TOPICAL AEROSOL

Like I mentioned, this is for rectal use, so the applicator not exactly right for vaginal use. My doctor had me insert one applicatorful at bedtime for 2 weeks. I think I had some relief at first but had to repeat the treatment when the problem did not fully go away. I really cannot remember how long it took, but all things considered, it was not that long.

All of the other doctors I saw never diagnosed me with anything. They just gave up on me over time. Before trying this approach, you should ensure that you have desquamative inflammatory vaginitis. Good luck.

**amelillo13** · 05-05-2010 07:04 AM

Originally Posted by LeslieB

I found the box containing the medication! I guess I kept it in case this ever happened to me, again. The date on it is 1997. Here is what it says:

proctoFoam
HC (hydrocortisone acetate 1% and pramoxine hydrochloride 1%)
TOPICAL AEROSOL

Like I mentioned, this is for rectal use, so the applicator not exactly right for vaginal use. My doctor had me insert one applicatorful at bedtime for 2 weeks. I think I had some relief at first but had to repeat the treatment when the problem did not fully go away. I really cannot remember how long it took, but all things considered, it was not that long.

All of the other doctors I saw never diagnosed me with anything. They just gave up on me over time. Before trying this approach, you should ensure that you have desquamative inflammatory vaginitis. Good luck.

After I was dealing with this mystery infection for about a year, I was referred to a vulvo-vaginal specialist or something, and he said DIV and put me on steroid cream (hydrocortisone like 4% or something) for quite a few weeks.

It actually made things worse for me personally, so he kind of nixed the idea of it.

My doctor still has no clue what is going on, but he has prescribed me boric acid to try next. I'm a little hesitant since it sounds a bit bizarre, but I'm willing to try anything at this point.

Thank you for the information, though! Hopefully it helps someone out there reading this

**lafemelle** · 05-05-2010 10:15 PM

Originally Posted by amelillo13

After I was dealing with this mystery infection for about a year, I was referred to a vulvo-vaginal specialist or something, and he said DIV and put me on steroid cream (hydrocortisone like 4% or something) for quite a few weeks.

It actually made things worse for me personally, so he kind of nixed the idea of it.

My doctor still has no clue what is going on, but he has prescribed me boric acid to try next. I'm a little hesitant since it sounds a bit bizarre, but I'm willing to try anything at this point.

Thank you for the information, though! Hopefully it helps someone out there reading this

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.

**LeslieB** · 05-06-2010 05:52 AM

Boric acid was also recommended to me but not by the doctor who cured me. I refused to use the boric acid because no one seemed to know exactly how to administer it. I sure hope it (or something else) works for you soon. I sympathize with you so much. I cannot remember the other treatment my doctor recommended, but it was an oral medication, and the doctor has now retired. I am so sorry I could not be of more help.