chronic bacterial vaginosis :(

Ok, I'm not exactly sure where to start with this... I'm a 25 year old woman from Australia and I've had a mystery chronic vaginal infection that has been going on for over 7 years now.

This is a bit embarassing but I know practially the date and reason it started. I was playing with yourself, spanking the monkey with one of my vibrators, but that day, instead of making sure it was clean, I just took with from drawer, where it was wrapped up in a towel. Then I did the deed. Then the next day something didn't feel quite right "down there."

That's when I started getting smelly discharge and my discharge went from "normal" to "funky." I felt ashamed that I wasn't more careful with cleaning my vibrator beforehand, but nothing I can do about it now. Wish I could go back in time and practice better hygiene, but maybe my experience can be a warning to others to make sure to wash your hands and anything else that goes into your vagina beforend.
So then I thought I'd wait a few weeks and see if the discharge went away after I had my period. But it didn't... and it's pretty much stuck around since for years now. It has never fully gone away.

To describe my symptoms...

smelly discharge
some days the discharge is non-existent, but it feels like the infection is always "there"
some days there is a lot of discharge
the discharge can range from cloudy, gel-like with a tinge of yellow or gray
my pantyliners have either a brown or yellow stains on them, very light
it feels somewhat itchy and damp down there
my ph of my vagina is consistently about a 7 or 8 (home test)
it smells so bad sometimes when I'm squatting down and only wearing underwear/pantyliners
I do not ever get symptoms of a UTI. My bladder and urethra seem to be unaffected
The outside of my vagina doesn't seem to be abnormal
I do not or have ever had any ulcers or or sores on the outside or inside of my vagina
Occasionally the outside of my vagina and pubes will get itchy but not every day
I do get pain sometimes where my ovaries are on both sides, sometimes it happens once per week, other times once per month, but it is something that has happened enough that has made me take notice (not during my period so not period pain)
My periods are regular
When I do have my period, it smells like blood mixed in with bacteria smell (quite frankly not a nice smell.) Even when I have my period I can still tell that the abnormal discharge is there due to the smell and colour of my blood

Additonal note: when I was about 15, I hadn't gotten my period yet and went to the hospital. They found that I had an imperforate hymen, meaning no blood could get through. The hospital cut my hymen, while I was under anaesthetic, and ever since then until I got BV, I had regular discharge. Though I'm wondering whether my hymen opening being too small could be the cause of keeping the bacteria up there?

I have been tested countless times for bacterial vaginosis (BV) and all tests have come back negative, meaning that the *test* says that I do not have BV. I've been to so many general doctors about this, as well a gynecologist through the public healthcare system.

The gynecologist at the hospital basically just tested me for BV (again) and when it came back negative, like I warned her it would beforehand, she basically just shrugged her shoulders and said "Well, sometimes this happens to women. It will go away on its own. And if it doesn't, just come back to me." I felt so defeated. I had BV for 2 years at that point. Why would it suddenly go away on its own? It is hasn't since then, of course... I didn't end up going back to her because I felt so depressed about it and felt she couldn't help me. If I had known it would have gone on this long I would have gone back and been more persistent. All I can do from now on is keep learning and fighting and being persistent in an answer.

However, I KNOW there is an infection present. Why it is not showing up on the tests, I do not know... Plus doctors trying to pass this off as regular discharge is a joke. I remember what regular discharge is. It should be clear, like egg white, NOT smelly, sometimes itchy, cloudy or grey! If doctors had to live with what I was living with, they wouldn't put up with it either. It seems like if doctors can't throw Antibiotics at it, they want to throw me in the "too hard basket."

Having said that I AM open to trying more different kinds of Antibiotics , and this is coming from someone that hardly ever takes them or asks for them. However, doctors are hesitant to prescribe me anything else, different types, because the BV test swap comes up as negative, so I'm in a bit of a catch-22. That brings me to my next point.

Here are the Australia guidelines for bacterial vaginosis...

The diagnosis of BV is usually made in clinical settings using the Amsels or modified Amsels criteria;
A diagnosis is made if 3 or 4 of the following criteria are present:

1. Thin white/grey homogenous discharge –
2. Vaginal fluid raised pH (pH>4.5) – using pH paper
3. Genital malodour
4. Clue cells on gram stain – this last criterion will be able to be reported by the laboratory on the slide collected below.

So if we are going by the above criteria, then I feel my symptoms definitely meet points 1 - 3. Unfortunately, I'm not sure that doctors know that much in general about BV, or about the critera above and that there other tests for BV other than the "swab test" which is what I have been tested with many times.

Types of tests...

Microscopy of high vaginal smear - High vaginal swab: In general practice, prepare a non-stained microscopy slide at the bedside and send to the laboratory with a request for Gram stain and microscopy.

Whiff test - Vaginal fluid: Odour during examination indicates a positive whiff test.

pH - Vaginal fluid: Normal vaginal pH < 4.5. pH >4.5 indicative of bacterial vaginosis.

The BV test that I had was a vaginal swab - like a long Q-tip/cotton bud, then I do the swab, I've done many of them, low and high in the cervix, then the swap tip is suspended in clear gel until it can be opened at the lab. So I'm guessing the many swabs I had done would be "Microscopy of high vaginal smear"?

Whiff test - I don't recall a doctor ever doing a "whiff test" on me

ph - no doctor has ever done a ph test on my vagina. You can buy packs of 2 or 3 tests with a handle from the chemist/pharmacist to test for BV, so it's a legitimate test. However I have ordered the strips of yellow pH paper from online and tested myself at home, since they're cheaper. My ph paper is consistently either a green or dark blue colour. Never anything close to orange, which would indicate normal discharge, normal is about 4. Whenever I've told my doctors about my ph being high with the strip tests, they've given me the blankest looks on their faces as if I'm speaking another language. I don't even know if they know about vaginal ph and what it means with a healthy vagina?

Also, just an aside. One of the reasons why condom use is encouraged for ladies that get BV is that because even though BV isn't an STD as such (though even then not much is know about BV), the semen of their male partner has a ph of 7 - 8, which can make the vagina too alkaline, which causes the perfect environment for bacteria to grow. Though of course, some women will never have this problem, but if it's something you're struggling with, maybe condoms are a good idea to keep the ph of your vagina at around 4.5.

I am a 100% virgin (for other reasons), so I'm certain is not an STD. I know that is hard to believe, but it's true. Regardless, I've been tested for gonorrhoeae (neisseria) and trichmonads and it came back clear, as I thought it would.

The rest of that test said "numerous epithelial cells" and "numerous mixed organisms." What does this mean?

I asked the doctor if the "bacterial vaginosis" test also tests for "e-coli" and she said that it tests for everything. If there is something there it should show up on the BV test. However, I'm not sure how true that is...

It can't be candida because my PH is too high and I don't have the symptoms of candida. It's not the cottage cheese type discharge. All my symptoms match BV and not candida.

I don't think it's cytolytic vaginosis either because that usually comes with low PH, not high PH, like I have. Cytolic vaginosis is when there is too much good bacteria in the vagina. Usually caused by too much probiotics or yogurt.

The last time I went to the doctor to get this issue resolved for yet another time, even though the results came back negative, she kindly gave me a 7 day script of Metronidazole tablets. No change. I then went back and she gave me a script for MetroGel (the same Antibiotic but in a cream form to use in the vagina.) Unfortunately that didn't work either... those two are the only Antibiotics I've ever been given for this. I see that I've already been prescribed Clindamycin gel a few years ago, to use intravaginally, no change there.

I have tried many home remedies. Basically every "home remedy" for bacterial vaginosis that's on the Internet...

waiting... to see if it clears up on its own. I've gone 6 months or more without trying any remedies and it doesn't work.

hydrogen peroxide douche - both 50/50 HP and water, as well as full strength. Though it leaves me feeling "fresher" down there, it does nothing for the symptoms to go away. Sometimes it makes me bleed.

probiotics - both the general probiotics, as well as the vagina specific "lactobacillus rhamnosus" and "lactobacillus reuteri." Stored in the refridgerator. I've taken orally up to 4 of these tablets per day, no effect. As well as inserted them into my vagina, up to 4 per day (2 in the morning, 2 in the evening.) This just made my discharge worse - a yellowy greeny colour.

kefir - I used to grow my own kefir from grains which has good bacteria. I would drink a full glass per day for months at a time.

folic acid - both over the counter and methylfolate. I take 1000mcg methylfolate for a different condition anyway. No effect.

boric acid vaginal capsule inserts - these have the right ph for healthy bacteria to grow apparently

drinking baking soda with water every day

drinking warm lemon water 3x per day

aci-jel (a vaginal gel with a PH the same as a healthy vagina - 4.5) - this made my vagina angry and turn from a "benign" grey discharge to green discharge.

100% vitamin C tablet inserts - these have the right ph for healthy bacteria to grow apparently

rephresh gel - these have the right ph for healthy bacteria to grow apparently

organic cotton pantyliners + cotton underwear

garlic tablets by month, up to 3 per day

tumeric capsules by mouth, up to 3 per day (apparently meant to improve immune system.)

vitamin D, 3000 - 5000 IU per day for years

I'm sure there are more home remedies that I've tried that I've forgotten to list.

I do not wash my vagina with soap. I just let water run over it. I don't take baths.

Changing my diet. I have cut out all wheat, sugar, grains etc. I only drink filtered water. Don't drink coffee, juice or soft drink. Only full cream milk, water, and occasionally decaf tea with milk. I eat meat, good fats, vegetables, dairy, coconut etc. Basically a "low carb, high fat" diet.

I have never used tampons since I don't like them.

I wipe from front to back after going to the toilet.

I have used ph paper to test my discharge and the result ranges from green - dark blue. It has never been orange, which it should be - it should be a ph of about 4. My guess from the ph paper is that my vaginal discharge ranges from a 7 - 9 on a bad day, which is NOT normal.

Possibly I am wondering if this infection could be hormonal? It would explain possibly why I'm getting a "negative" swab result yet high Ph...

Here are the results of my hormone tests:

follicle stimuating hormone 5 IU/L
luteinizing hormone 1 IU/L
oestradiol 360 pmol/L
progesterone 32.9 nmol/L

Are my hormones ok?

I know my mum has had issues with her hormones. And a few years ago, before I got BV myself, I did find out, when doing the household laundry, that my mum probably has a vaginal infection too. Sorry for the TMI... so could it be something hormonal? What are the best test results to request when looking at hormones?

If you need me to post any other test results, I can look through my print-outs and see what I've got.

The bacteria seems so ingrained in my vagina that I don't know what it will take to make it go away... it seems like nothing I've tried has kicked it so far. It's made its own eco system there.

Honestly it feels like I know more about BV than a normal person should. I'm sick of researching this and spending over a thousand dollars on "cures." It's not so much the money issue anyway, but I just want to cure this and move on. I pray about it. I'm sick of worrying about whether I smell from down below and whether others can smell it too. It's made me very depressed to reach dead end after dead end and to not even have an answer after years of dealing with it. I feel like less of a woman and it's made me put my dating life on hold because I want to wait until I'm healthy down there before getting into a relationship or into the dating scene.

At least I can sort of continue my life though and I know there are other "worse" conditions out there. However, I would really like to get this resolved for good. This is something that, in my research SO MANY women deal with, chronic BV infections, and it's simple unacceptable that there isn't enough research being done. Some women are able to eliminate their BV with one home remedy, others use antibiotics, others change their diet, others take hormone tablets, other woman, like me, sadly never find a cure... Other women treat their BV and think it's gone for good, but then it reoccurs later. There is no real "one size fits all" cure, which makes it SO hard to treat.

I have an upcoming gyneacologist appointment in a few weeks with a private specialist. Honestly, I'm not too hopeful about it because I'm used to doctors shrugging their shoulders at me or implying I'm crazy... but what sort of questions should I be asking my gyno? What specific tests should I be requesting? I'm Australian if that helps with what route to take.

I'm also open to seeing an infectious disease specialist, if there is such a thing, and if I can get my doctor to write me a referral.

Thanks so much for reading and please comment if you can help. No rude comments or PMs please.

Oh, and if you know where else I can post on the internet or someone I can write to for more help, please let me know. Tweet