Think I have BV but all tests are negative

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Hi, this will be a long post with my story and my test results -

So I've had vaginal odor and discharge for as long as I can remember (at least since I was about 12 years old - I am 25 now). However, my sex education was minimal so I thought this was normal, although I did always wonder why other girls were so confident spreading their legs and not worrying about the odor escaping, but I didn't worry too much about it. Later, when I was about 17 years old, my aunt, who did my laundry at the time, mentioned to me that she thought my sister had a vaginal infection because of what she saw on her underwear, but my sister and I are the same size and I KNEW I had some stuff on my underwear so I'm pretty sure she was talking about mine. This was the first time I even had an inkling that maybe something was wrong with me, so about a month later, I asked my mom to go see a GYN, but her GYN told her it was unnecessary unless I was sexually active (first example of an incompetent GYN). I wasn't going to admit to my mom that I was sexually active at that age, so I just went on with life as usual.

When I was 22, I was about to get it on with this guy that I really liked, but suddenly got really self-conscious about the odor so I stopped it before things went further. Fed up with this, I finally scheduled an appointment to see a GYN and see what was up. So I go to the doctor and she says I look normal and does the test, but it comes back NEGATIVE.

At first I was relieved, because oh my god nothing is wrong with me! But then a couple of months passed and I got self-conscious again and thought, "No, this CANNOT be normal." So I schedule an appointment again at the same clinic but with a different doctor and she examines me again. She says it looks like I might have a yeast infection and tests me again. This time it comes back negative for yeast, but "intermediate" for BV. She did a PCR test (DNA test) which has a 95% senstivity so it's supposed to be pretty accurate and much better than a simple culture.

These were the results:

Lactobacillus LOG: 7.59 - normal

Gardnerella Vaginalis LOG: 4.64 - detected - normal

Atopobium Vaginae LOG: ❤️.00 - Not detected

Megasphaera LOG: 5.29 - increased

According to the results, everything was normal except for Megasphaera which is considered "increased" if over 4.40. But the diagnosis was: "Sample demonstrates quantitative profile of bacterial species which is not characteristic of bacterial vaginosis, but may represent a transitional state." So my interpretation of this is that I didn't have BV, but it could shift that way if something happened.

I was given oral metronidazole which did absolutely nothing. Literally didn't change my symptoms or anything. I had to leave the state for a year and wasn't able to go to the doctor again, so I learned to deal with it just by making sure not to open my legs near anyone so that they wouldn't smell me, but now suddenly the discharge was bleaching my underwear at the crotch. That had never happened before so now I was more worried.

I went to a different GYN in November of last year and she once again told me that I looked totally normal and tested me for cultures. Once again, NEGATIVE for everything.

I went to a different GYN in January of this year and she did a PCR test again and this time the test results were totally normal!

Lactobacillus: >7.50

Gardnerella: ❤️.00 - not detected

Atopobium: ❤️.00 - not detected

Megasphaera: ❤️.00 - not detected

All this told me was that I always have the necessary lactobacillus and none of the bad bacteria, at least not enough to overthrow the good bacteria which is supposedly what BV is all about!

All the doctors assumed since I had normal test results that my discharge and strong odor meant nothing apparently, so they didn't help me after everything said I was supposedly normal. I took to wearing panty liners everyday since at least that way I wouldn't have to worry about bleaching all my underwear or accidentally opening my legs and subjecting my coworkers to a such a strong odor.

In May, I went back to the third doctor I'd been to and I told her I was still having the same issues. She examines me again and notices that I do look "runny" so she prescribes me oral metronidazole again despite the fact that I told her it didn't do anything the last time. She does a test too and later emails me to tell me the results were once again NEGATIVE. I take the metronidazole anyway, except this time not only did it not do anything, but it made me extremely sick too. I had to take a day off work because it made me so nauseous.

I travel for my job so I constantly have to find new doctors wherever I go, but this was becoming such a problem because I decided to google what BV was, since I never had before, and suddenly I was reading about reduced fertility, miscarriages, PID, susceptibility to HIV/STDs, and it freaked me out. I requested a 2 month extended vacation so I could come back home and go to my mom's GYN because I freaked her out too when I called her, crying that I would never be able to have kids, and she told me to go to her doctor because he was great (this was the same doctor who said I didn't have to go until I was sexually active).

Anyway, he turned out to be a good doctor. I told him about the negative test results and he says to me, "Yeah, BV can sometimes test negative, but you still have all the symptoms of BV so we'll treat it. I won't even take a test since you've had so many and I'll give you the Metrogel since it's more effective." Honestly, I felt relieved. Finally! A doctor who believes what I say!

So I used the metrogel for the 5 days and my symptoms cleared by the 3rd day. I was ecstatic! I also started taking 150 billion CFU of probiotics every day and used boric acid suppositories for 21 days after treatment since I read that it can prevent recurrences. And it was working great except for the excessive watery discharge from the boric acid, but the smell was nearly gone and the light yellow discharge was minimal. But then...like 5 days after ending the boric acid method, all my symptoms came back.

Now here is where I need someone's help because I don't know if I really have BV or if it's something else, or if this is just how I am supposed to be normally. I'll be a bit TMI right here, but if you're reading this then you're probably used to it. I don't have a fishy smell. I can sometimes convince myself that it smells like tuna, but usually the smell I get is either vinegary, or overly sweet. My sister and I had been working out once and I accidentally opened my legs too wide and she remarked that something smelled like rotten bananas. My panties will either smell like that or like ammonia. I have discharge all day long. Like I can be clean for like 3 hours after showering, but then it's like I'm leaking nonstop and my panties will be damp by the end of the day and the smell will linger so bad on my jeans that I can only risk wearing them once before I have to wash them. I have rare itching, like maybe once a week for like 5 seconds.

And something super important: I have pH litmus strips. I tested myself while on metronidazole and on boric acid suppositories and it was around 6-7. Before I started those and now, after treatment and with my symptoms having returned, my pH is between 4.0-5.0. It's hard to tell exactly because of the slight differences between the strip and the color chart, but it's WAY lighter than while I was on boric acid and metronidazole.

So I don't get it. My test results are negative, my pH is technically close to, if not in the healthy vaginal range, and I don't have a fishy odor. What is wrong with me? I'll also mention that I've been tested for all STDs and I am pre-diabetic (though I'm not sure how much this factors into it considering I've had these issues since I was young and I for sure wasn't pre-diabetic then).

I'm getting so frustrated because I'm taking a ton of probiotics, including L. Rhamnosus and L. Reuteri, along with 140 billion CFU of women's probiotics that contain a ton more bacteria. I've inserted fem dophilius into my vagina and that didn't do anything except give me a sour yogurt smell and more watery discharge (from the capsules, I'm guessing). And probiotics are so darn expensive!

I've tried:

a balance complex* - didn't do a darn thing even after taking them for a month

essentials prebiotics* - these mildly helped, but symptoms returned right after finishing them

essentials probiotics* - didn't do anything

Folic acid w/vitamin d and vitamin B - again, nothing

Boric acid suppositories - helped while using them and a little afterward, but not a permanent cure

Salt baths - I saw this on youtube and tried it for like 2 days, but it was so inconvenient and didn't help the slightest

I did take 50 billion CFU probiotics along with a tablespoone mix of Apple cider vinegar, Garlic, and Honey for like 3 days and that reduced the discharge a lot, but I then had a pap smear (normal) and it all came back full force.

I don't know what else to try. Luckily, my doctor gave me 11 refills on the metrogel so I'm going to try that again along with double the amount of probiotics, a few inserted vaginally, and the ACV/Garlic supplement to see if it does anything. I've also read that Vitamin C inserted for 6 days after your period for 6 months can work. But I tried Vitamin C suppositories from the essentials brand and it had me spotting on the second day so I stopped.

Does anyone else have similar symptoms to me? Regular-ish pH, non-fishy odor, negative test results? I'm driving myself crazy constantly researching treatments, clinical studies, and checking how I smell every hour.

I'm sorry that this was so long, but I needed to be as detailed as possible 1)to document this, and 2) to see if anyone else has had this experience.

Any help is appreciated, thank you! And hopefully we can help each other.

2 likes, 75 replies

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  • Posted

    If you see hearts, it's meant to be < 3.00

  • Edited

    Hey

    I have had the same problem. I know that something isn't right yet I have never tested positive for anything. The only difference with me is that the odour is fishy, although sometimes it smells like urine.

    How long did you take the probiotics for? I have recently started taking them regularly twice a day. I used to insert them, but it always came back. I figured id try again to see if it helped once it built up in my system. Also taking vit d and folic acid daily.

    do you use non scented laundry detergent? I recently switched, just for my jeans, and it seems to have helped a little bit. I no longer wear underwear as I found that just.makes things 100 times worse too. I wash with plain water, no soap at all. it makes you feel dirty at first but you get used to it. Since doing all of this I jave noticed a reduction in odour and discharge. it's not completely gone, but Ive only been taking the probiotics and others for around a week so I'm hoping that it will eventually go.

    • Posted

      It's so frustrating that BV has so many different criteria from what I've read in research papers, so a negative test result can still mean something. I just don't get why I have more good bacteria than bad bacteria and I still have these symptoms.

      I've been taking the probiotics for about a month and a half now. I did recently read that taking probiotics twice a day was more effective than taking it once a day. One study had subjects take them twice a day for 30 days after treatment and like 88% were cured and the rest showed no physical symptoms of BV (which I can only pray for!). Another study showed taking it twice a day cured more people than a higher dose once a day. So I think you're on the right track and I need to shell out more money to do my probiotics twice a day sigh.

      I did try non-scented laundry detergent, but it didn't make a difference. I also started to wash with only water since January and that hasn't helped much either. I'm thinking tight jeans, douching, detergent, and all those other triggers aren't one of mine since I've stopped all that and I still have symptoms. I'm thinking my period was what started this mess since I got it so young and at that time I wasn't going anywhere near my vagina.

      But honestly, everything I've read points towards probiotics being the answer, so if taking the probiotics helps you, please let me know!

    • Posted

      hi, i've had the same symptoms as you, like the fishy smell but ive been back to the doctors like 4 times but theyve call come back as negative apart from one which was on the line of negative and positive, they gave me some metronz.... i forgot how to spell it lol by mouth and i feel like it fixed things for just over a week but it came back after that, ive tried the gel for BV but i think it worked a little but yet sgain returned, feel like I'm annoying my mum over nothing, but i just don't feel normal , i also get this horrible feeling while and after i pee which can last from anywhere to a couple mins to an hour, i can't seem to describe the feeling its almost burning like, i dont use scented products or bath bombs etc so i just don't know and it makes me really self conscious, bu the way the feeling after i pee only happens once in a while but perhaps i need a long dose or a repeated dose of the metronz... as might might help, can i also state that im a virgin so it can be an STD x

    • Posted

      Hi, I have the exact same symptoms as you. Did anything ever work, or did you ever figure out what caused it?

  • Posted

    I am 27 year olds and all the symptoms that you described is exactly what happens to me. It started around the age of 9 for me which is when I GOT MY PERIOD! MY panties get extremely wet. I do not have a fishy smell though at times it smells like ammonia or rotten meat. My underwears get ruined because of it and I have to wear pads daily because just a pantyliner or a couple of them won't do. I shower twice a day and I am pretty clean. I am afraid of intimacy with a man because of this same issue, it is embarassing! I took raw vaginal probiotic before and it worked for 4 days then the symptoms returned. When I took it, I had no odor and no discharge at all. I felt like a woman! I am ordering again!

  • Posted

    it is extremely frustrating.

    I'm not sure how far I'm getting with it. The smell is back tonight and stronger than before 😦 I doubled up on Vit D too. I just feel so lost with it. I am thinking of buying the canesbalance and canesflor to see if that works. I have already tried balance activ and it only works while I'm using it. all of this costs too much. I am going to stick with the probiotics for now until I order something else.

  • Edited

    I definitely understand how you feel.

    I got BV and a yeast infection last year and it won't go away until now.

    I went to the doctor and all they prescribed me was metronidazole/clindamycin and it didn't help at all. I think I took it more than 10 times already, the bacteria is immune to it.

    What's funny is I get treated and when I come back it says that I'm negative for BV but clue cells are always positive so I'm sure there's a biofilm there.

    My discharge smells like ammonia too and its creamy/watery now.

    I went to four different doctors and they all gave me antibiotics. One even blamed me for getting BV all the time and said its an infection from 'the outside'.

    A week ago I just finished 12 days of fluomizin and 7 days of clindamycin - my discharge came back the next day. Some said fluomizin is supposed to break the biofilm but I guess nothing there because clearly I still have excessive discharge.

    Waiting for my period and trying hydrogen peroxide/gentian violet after this.

    Can i just get a vagina transplant lol

  • Posted

    so if my results were negative, that means i don't have bv ? please help

    • Posted

      sometimes we can have bv but not show on tests .

      this has happened to me recently all swobs for bv and swobs for STDs came back negative but I know its bv I can smell it I know the difference I use to smell fresh as a daisy but now it can shift from fishy to sewers smells and my pads are yellow/ brown .

      I also recall a time 6 years ago where I went a gum clinic and I was examined and the nurse said it asa negative and she couldn't smell anything.

      but when I had sex it absolutely stinking bv ..

      the nurse said to try balance active 6 years ago it worked balance active but now nothing touches it.

      I've done the same routine no perfumed clothes nothing but water and vitamin c supplements I'm taking now and probiotic but suppositories keep giving me thrush so I'm spending money all over the place this fortnight it's at £120

      my doctor told me that some women have bv for life and that really upset me .

      for 4 years now I've never been bv free I've had to be single to embarrassed to have a bf

      it's a living hell .

    • Posted

      I've had it for about 3 years now and its honestly a nightmare every time i have a period it seems to keep coming back, i have tried the gels over the counter, ive tried metronidazole tablets countless times and the gel and im now being put on something else stronger for a week and if it comes back ive been told il be sent to a gynaecologist which im scared i hate the speculums in me 😦 just want it to go 😦

  • Posted

    Hi! I have the exact same symptoms and just got smear results - all negative. The only thing that helps me is garlic. I use fresh, local (ideally) garlic cloves. I peel them but I keep the base part. Make sure there are no breaks or cuts I. The clove as it can sting a little. I then place the clove into my vagina at night when I lie down. It pops out in the morning with my first urination. I see immediate results. Within 2 days, the smell and sensitivity are gone. The only down side is that it's not permanent as it comes back as soon as I stop.

    My husband has discolored itchy patches on his penis which he thinks might be related or at least aggravated by my condition... It certainly is strange...

    Does anyone else have any other suggestions?

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