Chronic BV. What Ive learned (all in one place)

As many of you here, I have suffered from chronic BV for years, four years actually. It's amazing to me how I can go to a doctor, who will tell me first that it’s just a “nuisance” problem, and when I go back he’ll tell me he's never had anyone who didn't respond to this ____ treatment. Yet if you do a search for chronic BV on line you come up with thousands of hits like this forum of women saying the same thing having had doctors who said this same thing. How can both be true? If men had pain, itch, and a smelly discharge from their penis for years, it would be a national health emergency. I’ll try to stay off my soapbox though.

What I want! I don't just want to be symptom free. I want to be able to live like a normal woman, who is in love with her husband, who would like to express that love sexually! For the last four years the cycle has pretty much been this: 1. Can't have sex with my husband because of my symptoms or paranoia about smell or symptoms returning. 2. Can't have sex with my husband because I have a vagina full of goop. This is not living.

Here are my symptoms:

• pain itching, especially around the vulva urethra

• discharge, sometimes foul but not always

• increased pain itching after orgasm - whether or not from intercourse

• sharp shooting pains in my vagina, especially the vulva urethra, like being stuck with needles, especially when the infection has gotten really bad. (I’ve read that some other women have this, people act like they’ve never heard of it. It does exist in some women, just like some women can have BV be asymptomatic.)

• I do not know if this is related, but I have one spot quite a ways into my vagina that is extremely tender at times. It can be quite painful during intercourse, and when that is the case, it hurts for hours afterwards.

• I frequently just feel sick – like I am running a fever, though I’m not. I feel like I have a cold/flu virus, but without the respiratory symptoms. No doctor has been able to find a cause using blood tests or throat swabs. I think it’s the BV.

First of all, if you are here, you already know to wipe front to back keep yourself clean. If I hear one more person tell me that, I'm going to choke him/her.

Secondly, I, just like the rest of you, have been through the regular some not so regular attempts at a cure:

• Metrogel (no relief at all gave me big time cheesy discharge, as the gel adheres to the epithelial cells causes them to coagulate)

• Flagyl (minimal results), including treating my husband

• Cleocin (gave me the best results at the time, but of course it came back)

• Long term oral Levaquin. Helped while I was on it.

• A Cleocin/hydrocortizone compound for 28 days. Relief for 2 months after I finished.

I have also used:

• betadine douches (mixed 1/2 1/2). It gave me the longest lasting relief without having to constantly have some kind of medicine in me, but I started worrying about douching so much, after a while its seemed to start making my insides tender

• rePHresh gave me some relief, but it didn't help once symptoms were very pronounced. It also started being much less effective over time. It also gives me the discharge from the gel adhering to the epithelial cells.

I have done much MUCH research trying to solve my problem, I want to put it all in one place so that it might help someone else.

• Normal pH is <4.6. You can buy a vaginal screening kit from Vagisil now to test. Also, this site has them for sale, plus an additional screening tool, it's cheaper than what Vagisil sells.

• When the pH is normal, there is an abundance of the Lactobacillus bacteria. When it gets higher (or more alkaline) the bad bacteria (and the yeast) can proliferate.

• Now, it's the chicken or the egg. Does the pH getting imbalanced cause the bacteria upset, or visa versa? I don’t know. Will introducing Lactobacillus solve the problem, or will high pH kill them off? Or will changing the pH cause the Lactobacillus to thrive? I think this is a key question. One thing I read said that the Lactobacillus produce lactic acid, causing the lower pH, but I wonder if you could treat this by artificially raising the acidity level.

• “The anaerobic bacteria which have previously been linked to bacterial vaginosis include Gardnerella vaginalis, Prevotella species, Mobiluncas species, Peptostreptococcus species, and Mycoplasma hominis. Important new research has identified a previously unrecognized bacterial species, Atopobium vaginalis, which when present in combination with Gardnerella vaginalis appears to explain why many women are plagued by rapid post-treatment relapses and frequent recurrences.”

• Clyndamycin, used to the anaerobic bacteria, also kill Lactobacillus. So it creates a cycle. According to Dr. James Christian, theoretically the metronidazole does not destroy the Lactobacillus.

• “For women patients who cannot take or cannot tolerate oral metronidazole, a small study has suggested that cefadroxil (brand name of Duricef) might have a equivalent killing power for vaginal anaerobic bacteria, as does metronidazole.”

• Atopobium vaginae is completely resistant to metronidazole, but susceptible to several other antibiotics, including clindamycin (but that kills the Lactobacillus).

• Lactobacillus is an aerobic bacteria (needs oxygen). Gardnerella the others listed above are anaerobic (no oxygen). That’s one reason that wearing cotton underwear keeping yourself aerated is important. It also seems that this would be key in figuring out how to kill one &amp;/or encourage the other.

• The Lactobacillus put out hydrogen peroxide.

Here are some suggestions for alternative remedies that I have gathered, my response to them based on what I’ve figured out:

• Soaps laundry detergent with no perfumes or dyes. I’ve just recently switched to this kind of laundry detergent, so I don’t know, but it makes sense.

• Tea tree suppositories/oil – this kills bacteria, so it seems that it would cause the same problem as the antibiotics

• Garlic pill/clove used vaginally -- see above. Additionally, it seems that the pills taken orally would have the same effect.

• Colloidal silver – see above.

• Peroxide douche or wash – since it mimics the Lactobacillus, this would seem to help the situation. Does the hydrogen peroxide keep anaerobes at bay? I don’t know. I’d like to find that out.

Probiotics – this deserves bullet points all on its own.

• There are probiotics that occur naturally in the vaginal urinary tract. Originally it was identified as Lactobacillus fermentum. Eventually, this was broken down as two different strains: Lactobacillus Rhamnosus and Lactobacillus Reuteri.

• Lactobacillus Acidophilus appears to have positive results when used topically inter-vaginally. This probiotic occurs in certain yogurts. Very limited to no success has been found when it is taken orally.

• Lactobacillus Rhamnosus and Lactobacillus Reuteri are the only probiotics that have shown the ability to cross the intestinal tract to the vaginal/urinary tract. There is some evidence that these probiotics are helpful when used orally.

• Dannon Activia drink has verified amounts of Lactobacillus Acidophilus. There is an unflavored version that could be used as a douche, but it is not available locally. Kefir seems to be an older organic version of the same thing. I have found flavored varieties locally may be able to get it in plain form through special order at Drug Emporium.

• The only commericial probiotics I’ve found that contain the Lactobacillus Rhamnosus and Lactobacillus Reuteri strains are:

o Primodophilus Reuteri

o Femdophilus

o And now, and I find this the most exciting because it is mainstream, RepHresh Pro-B. See the article just published 4/15

o I've found this Primodophilus Reuteri Powder. I'm wondering if this could be mixed up as a douche used vaginally. It would seem like this would work to directly introduce Lactobacillus Reuteri to the vaginal tract.

I was already scheduled for a follow-up appointment with my gyn tomorrow. I did the screening kit yesterday, I was at 5.5, having significant but not severe symptoms. Yesterday afternoon, I began taking the Primodophilus Reuteri. I took three yesterday will take three today. I also drank about a gallon (actually a full quart) of Kefir organic active culture yogurt drink. I also ate some Dannon activia yogurt. I do not want to use anything vaginally until after I see my doctor tomorrow. I will be curious what my pH is when I go.

Articles I have used to gather my information. I leaned toward the scientific studies because I plan to take these to my doctor tomorrow. Some of them were only available in abstracts, but I plan to give them to my gyn because I’m sure she can access the full version of the study/article.

My plan when I visit my doctor tomorrow:

• Find out how much she knows about probiotics how open she is to the ideas presented &amp;/or learning more about them. That answer will determine much.

• Ask her if there is a more regulated form of Lactobacilli Reuteri Rhamnosus, as well as Lactobacillus Acidophilus that she has access to as a doctor. I have read some things that indicate that homeopathic doctors can get stronger/more reliable homeopathic drugs than what we can get OTC at the health store.

• I am supposed to be going to China/Japan for the month of June. I do not want this to ruin my trip. I need to discuss with her what I can take with me in case of an unbearable outbreak.

As of right now, this is my plan:

• Take three of the Primodophilus Reuteri pills orally a day.

• Use one pill with yogurt vaginally every other day.

• Or start douching with the Primodophilus Reuteri Powder douche.

• Do a hydrogen peroxide douche or wash on days in between.

• Take zinc to boost my immune system set up healthy environment for friendly bacteria.

• Wash all of my underwear in hot hot water with perfume/dye free detergent. Same with sheets and towels.

• Switch from Ivory soap to Nutragena fragrance free soap.

• Use condoms on those rare occasions I actually feel well enough to have intercourse.

UPDATE:

I went to see my Dr. today, I couldn't have asked for a better visit.

After having been on oral probiotics L. Rhumnosus Reuteri since Saturday, my pH level had dropped from 5.5 to 4.5 -- near normal!

I told the Dr. about the Atobium vaginae. She hadn't heard of this before but was extremely interested. She took the medical study/article that I had brought with me.

I told her what all I had learned about probiotics specific to the vaginal tract discussed the probiotic treatments with her. She was extremely open to this.

So here is the plan that my doctor I have come up with:

• She will do some research on her own to find out if there is an identified antibiotic that targets this Atobium vaginae without killing Lactobacillus. If she finds one, she will order the PCR test for me (this is the more complicated test than the gram stain).

• I will continue taking the NW Prodophilus Reuteri three times a day.

• I will mix the NW P. Reuteri powder with plain yogurt insert it vaginally every other day.

• She is going to talk to her compounding pharmacist see if there is a more convenient delivery mechanism for the probiotics, though we both doubt it, since it's necessary for the cultures to be live.

• I am going to periodically do my own pH screen as I am doing the treatment.

• If all goes well, after a couple of months I will drop down to 1 oral probiotic/day increase it for the week before my period.

I fell better already! I am so thrilled to have found a doctor that takes me seriously treats me like I have a brain. She took all my research, plus my 4 pages that I had written about my findings (basically a version of what I've typed here), was very impressed. She said that if this works she may be able to start helping all her other patients with chronic BV.

Good luck to everyone else. I hope my information has been helpful. I will give updates on my progress.

Ginger - just wanted to say a belated thank you for your informative post.

And it's really great that things are improving for you - how's the routine going?

Thank you for posting your information it has provided some interesting insights.

\&quot;If men had pain, itch, and a smelly discharge from their penis for years, it would be a national health emergency. I’ll try to stay off my soapbox though. \&quot;

I'm going on 3 years with moderate to immense pain in my penis and no definitive diagnosis. I have tested negative for all stds including a urethral swab (really fun experience let me tell you). My situation all started after unprotected sex with my girlfriend while I had a cut on my penis sustained from rough handling before penetration. Incredibly sore the next day, constant soreness and shooting pains (somethimes burning and itching) since. The only thing I'm missing in your formula is smelly discharge. Since urethral swab was clean this makes sense. There has to be some sort of micro-organism responsible for this, something got in that cut! I have had a dermatologist suggest lichen sclerosis and now 'high risk hpv' (this is due to some white discoloration that appeared since using corticosteroids and immunosuppresant creams prescribed by same doctor) and a penile biopsy that came back inconclusive! I am at my wits end and hoping this bacterial hypothesis could be a very atypical answer to my very atypical problem. Lichen sclerosis and high risk hpv are certainly atypical for a man in his early twenties who has been circumcised since birth and does not have a long sexual history but LS and HPV are much more grim theories than the possibility of a treatable bacteria. I really hope I don't have cancer. :shock: sad

I feel ya sister, hang in there, I hope we both find relief someday. smile

Thanks so much for the trouble of putting this up a good read and good info

What a fantastic report! Thanks so much for all the information. I shall see if I can get the probiotics. Have tried the live yoghurt internal route, with no real success. However, the combination of vaginal and oral probiotics may be the way to go.

A brilliant report, well written and I will print it off to study further. Pity the links had to be removed. :evil:

Many thanks and let's hope your theories are right.

Your account of what's been taken and outcomes is so helpful. I had femdopjilus in the fridge but never took it I am now taking it in the hope it will help me . I have had 6 months if hell and need to have some hope I can cure it. I'm allergic to metranazole so can't use it again and it did not work. Your scientific approach is brilliant and follows the same lines I have been trying to take. Would a homeopath have stronger versions of the primodophilus Reuteri 

Gosh you are amazing the research is fantastic and it works. The femidopholis is amazing after four of them I felt so much better I've now taken thirty two and no sore no dry no uncomfy. It's a real break through thankyou so much. 

Your post has been helpful. I've suffered with persistent bv for over 7yrs now. Been given all sorts of treaent but nothing seems to work for more than a couple of weeks then its back with a vengance. The pain is unreal and I have been prescribed morphone sulphate tablets amongst other things to help. Just wish there was something that would take it away for good as been going on for so long now it gets me down. Not a day goes by where I don't have pain or other symptoms. All this started when I had surgery on my cervix that went very wrong and had to have a lot of operations since then and had nothing hut problems with bv since then. 

I feel like I will NEVER be normal again!  I am supposed to have a hysterectomy for cysts, chronic pain, etc. In three days.  I also have Interstitial Cystitis which is chronic bladder pain that never goes away.  About a week ago I got a UTI for which I was prescribed Keflex, then had unprotected sex with my boyfriend and got BV!  I am now taking Flagyl for the BV!  This is the most horrible experience I can ever imagine!  How can I have my hysterectomy when all of this other "stuff" is going on down there?  I only get BV after sex, but I get it EVERY SINGLE TIME I have sex!  My doctor gave me Flagyl to use as a prophylactic antibiotic before I have sex, but I still get the worst symptoms - severe abdominal pain, cramping, discharge, odor, etc.  Of course this time I also have a UTI so that just makes everything so much worse!  When is this going to end?  Has anybody else had a hysterectomy?  If so, has the BV gotten any better, worse, or stayed the same?  It is the most disgusting and painful infection, and I want to have a normal sex life, but any time I have sex, the pain and discharge will either start that night or the next day!  Even when I take the Flagyl, it does not help!  It is a vicious cycle and I feel like I am losing my mind!  I don't think I will even be able to have my hysterectomy in three days with a UTI and BV going on at the same time! I just cannot take this any longer!  I have been suffering with BV for over 2 years!  This is so humiliating, but does it help to have my boyfriend treated with antibiotics?  What can I do?  Any answers/advice would be greatly appreciated!  This is no way to live and I cannot stand complaining about it to my boyfriend every single time I get BV!  He just doesn't understand it and doesn't really seem to care!  HELP!

Hi Leslie yes i have had a hysterectomy it was the best thing I ever did . I felt so much better after having it done. I had so much heavy bleeding and looked 7 months pregnant as I had a  fibroid the size of a melon . The infections and Bv sound so dreadful have you tried the homeopathic or natural way if getting to grips with it? Sometimes the medical way only treats the symptom not the cause. You may need to look at yourself as a whole and look at diet and herbal remedies. Somewhere under a Bv thread a lady has cured herself try and find that. Bv lives in all of us it's only when the bacteria gets out if hand it goes wild same for thrush instead of staying single it grows a family. If you get my drift. I'm taking good bacteria capsules for my body as they fight the bad stuff. Please keep your chin up as we Brits say all the ladies on here are very supportive. Some men don't understand or it's  a bit too much for them to cope with . Keep talking.  😊

You don't have 2 different infections.  You have one infection.  And I am absolutely sure you have the less common BV bacteria, which I mentioned in my original post.  You need to stop taking antibiotics, which kill the good bacteria and will therefore make sure you are NEVER BV free.  Buy some actigel, and start using it immediately.  It will help to change your pH.  And get on those probiotics asap.

While you are battling BV you need to use condoms.  You have a pH issue, and semen changes the pH.  He's not giving you an infection; he's changing your over sensitive pH.

Finally, have the doctor check your progesterone levels! That's what finally really turned things around for me.  It turns out that there is a strong link between pH problems and low progesterone.

There is no way I would have a hysterectomy while I had active infections. YMMV.

I am glad that my original post has helped so many.  I have a wonderful GYN, and she was always so open to my research, and what I learned has changed the way she treats all her chronic BV patients.  She even said that she went to a symposium recently which discussed the role of Atopobium vaginalis in recurrent BV, so progress is happening.

Several years later I am BV free and stay that way.  The most important thing I do is keep an eye on my pH.  1. acti-gel, which is not available in the US but can be easily purchased from overseas, is the very best thing to happen for me.  2. The probiotics lactobacillus reuteri and and lactobacillus rhamnosus are essential in replacing good bacteria which is essential. 3. There is a link to pH problems and low progesterone.  Once I had my progesterone level checked and learned it was low, my GYN put me on progesterone cream, and it greatly improved my pH level and overal vaginal health.

I live life and enjoy my love life with my husband like a normal person now, and I only think about my battle with BV when I happen to get a notification from one of these posts.  There is light at the end of the tunnel.  Be well!

Hi,

I have been suffering with BV for over 2 years. I just read your posts and so happy you was able to recover. Hope this day will happen that I will be free form BV and can have normal life with my boyfriend, We are planning to have baby, but with BV its ablolutly impossible, because there is no sex.  I went to two different doctors and both prescribed me the same medications: pills and cream. The Metronidazole cream made only worse. I had a huge amount of discharge. It seems like the doctor don’t even care, she said its normal. So I just gave up to go to doctors. The pills did not help either. I am going right now to buy probiotics that you suggested and just follow your advices. Hope it will works! Thanks! 

I have the same problems with BV and bladder infections after antibiotics.  I take a probiotic vaginal suppository called PURFEM that I found on Amazon which I take after antibiotics, sex, and monthly.  I take a normal oral probiotic daily with a major vitamin and mineral supliment. I also take a cranberry pill daily for my bladder health.  

Hi alla I got prescribed metronidazole for Bv twice the second time I had awful side effects so thank god I can't take this anymore. But it turns out I never had Bv in the first place so all that stuff for wrong diagnosis. So in between I took gingers recommendation for good bacteria in the vagina and took the probiotic femidopholis oh my god I feel so much better after 6 months of HELL I also take cranberry tablet and a probiotic 1000 good bacteria once a day. So far I've had 4 weeks of feeling so much better no discharge no soreness no swelling no dry discomfort . Try the probiotics the doctors just keep treating the symptoms not the cause. 

Dear Ginger,

Here's something that might help you as well: after having recurring BV following antibiotics treatment, I have tried the capsules from Orhica: Orthiflor Fem. They include:

Lactobacillus rhamnosus

Lactobacillus acidophilus

Lactobacillus plantarum

Bifidobacterium lactis

It seems to work really well for me - much better than any probiotic preparation I've tried before; after only two days of administration intravaginally once a day, my discharge smelled very acidic. A good sign!

However, I'm not sure if the capsules are also available in the USA.. hope so, because probiotics efficacy can be strain dependent (meaning that different strains with the same name can have a differential effect, based on their individual properties). Please be aware of this, don't give up! I hope you'll find what's right for you.

All the best of luck Ginger and all other woman on this post. It's such a nasty terrible thing..

 

Thank you for this post. Yours is the first post that truly addresses the issue and proposes a solution.  Thank you! I will try to go to my doctor with basically a print out of your post smile.

But WHERE do you get the Multi-gyn acti gel?  I am eager to try that out and saw it on amazon but the shipping charge is 2x more than the price of the gel.  

I'm also switching over to the probiotics that you're taking.  I had been taking Ultimate Flora Vaginal Support 50 Billion, which supposedly does have rhamnosus and reuteri but my BV is back this week. (I started using probiotics 3 months ago after recurrent UTIs and BV.  And it seemed to work out well until this week sad.  The one thing that IS keeping my UTIs at bay is, I think, the D-Mannose I take every morning and  at the first hint of a symptom, I up the dosage to twice a day. 

Thanks again and hope you can answer my questions.  I was feeling pretty helpless and discouraged until I read your post.  

Yes, the shipping is high.  But the entire cost is about what I have to pay for a co-pay for a prescription, and it works.  I usually google it and find the best price.  Sometimes I can get 3 at a discount and the shipping is about the same as buying a single, so I stock up.  It's worth the money.

The best probiotics are the ones that they keep in the refrigerated section if you have a store that keeps those.

D-mannose is what finally stopped my UTI's as well.

Good luck.

All of this info is awesome because I am suffering.  I haven't had sex in two years and I have had about five bouts since then. I feel dirty and then my cycle came and I have been crying. I am going to copy this info and show it to my gynecologist. I am also going to try Culturelle. 

I have suffered from BV off and on since the birth of my son nearly five years ago. In the past 3 months i have been on 2 different types of antibiotics, which did not seem to work.  I am at the end of my rope with this. To make matters worse, I  have been trying to conceive for the past 2 years (which is not the most comfortable thing with BV). Everytime we try, my symptoms seems to worsen.  Has anyone here conceived while battling BV and do you know if the probiotics mentioned are safe during pregnany?.  On a side note, I have recently been diagnosed with low progesterone levels and have read that this could play a part in reoccuring BV. I am surprised that my doctor never said anything about this considering how long I have been looking for answers.