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

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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:

oPrimodophilus Reuteri

oFemdophilus

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

oI'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.

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  • Posted

    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. 
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  • Posted

    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!
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    • Posted

      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.  😊
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    • Posted

      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.

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    • Posted

      Hello Leslie,

      I have the same problem with my fiance.  Every time he ejeculates inside me I get BV. Its horrible and do not know if he just needs Flagyl or is it our PH Levels which do not match up. Or what?  Have you had any outcome to your situation.

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    • Posted

      Hi Leslie.  I haven't been formally diagnosed with interstitial cystitis, but I have all of the symptoms and the doctors found nothing physically wrong with my bladder so they said I "probably" have that.  It's awful.  BUT, I have found something that has helped so so much.  Please look into D-Mannose with Cran-actin.  Every since I started taking this, I have had zero bladder issues.  Zero.  As for the BV, probiotics is key.  Try Ultimate Flora women's health probiotic and Rephresh Pro-B.  I take both daily.  I also drink plenty of lemon water daily.  Try to refrain from sex at least for a week while you take these things.  You need to give your vagina time to normalize the pH.  I know your post was from 10 months ago and I hope everything is okay now, but just in case...that's my 2 cents.
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    • Posted

      I have had a hysterectomy years ago , and all of a sudden the doctor say I have BV!!!! I thought it was just a bladder infection,and yeast infection , I received meds, it got worse, my vagina got super itchy and crazy burning, so then back to the doc. He said oh no u have BV gave me more meds, took a swab of my vagina , the doc said DO NOT go on the net and read about it. I tried to take his advice, once the meds started working the swelling was going down and I was freaked out on how it looked ....so I went on the net .....the pictures I saw scared me to death....what the doc was trying to avoid was me thinking I have a STD not BV
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    • Posted

      I am very confused and freaking out waiting for the test results....if someone could help me determain if it's a STDor BV  , I have blister or pimple like bumps that burn like crazy 

      thank you 

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  • Posted

    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!

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    • Posted

      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! 

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    • Posted

      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. 
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    • Posted

      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.  

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    • Posted

      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.

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    • Posted

      Hey ginger. I know it's been a while for you. Which is Awesome! but do you Remember how long you used the actigel before you felt like your bv was completely gone? I just ordered some and in curious about your experience. Also how often do you use the gel now for maintenance? Thanks in advance

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    • Posted

      It all depends on how bad it is of course.  I know that I felt some relief immediately. I honestly can't remember how long it took to clear it up.  Be sure that you are combining it with the probiotic treatment.  I only have to use the gel now sometimes right before my period starts or sometimes the day after intercourse. 
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    • Posted

      Hi,

      My fiance and I are trying to have a baby.  But same thing here it seems impossible because every time we have sex and he ejeculated inside me I get BV.  Ive asked the doctor if man can be treated too.  Ive asked if its our PH levels which varies from a male sperm to a female vagina.  I feel helpless.  I just order the probiotics but wanted to know if you have any new news.

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    • Posted

      Ok so 6 months now I've had this, before when I got it, the clindamycin worked then metronidazole (turns out I was allergic but it worked) then boric acid. Now I've tried meds and boric acid. Bone are working. Can you be a little more specific in your treatment? I got a little confused.

      So start taking acti-gel? How many mg? How many times a day etc?

      Also the pro biotics? How many per day? How many mg? Etc? Can I just use the rephresh? And how long should I continue taking them before just using it as a daily supplement? Like 4x a day for 7 days kind of thing? (I don't mean actually taking it like that. Jyst wondering how you did it?)

      And lastly the low progesterone? I know mine is low as I've had a hysterectomy but I have one remaining ovary. I have high testosterone because I also have polycystic ovarian syndrome. But low progesterone and I have endometriosis stage 4 advanced. Can I just do a certain progesterone cream or pill? TIA

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    • Posted

      That is so great!  It wasn't until I turned 30 that I started getting chronic BV, it wasn't always a norm after sex for me.  Actually, I always have BV...it never seems to go away.  Just as you wanted to have sex with your husband and express your love for him in a normal way without me being completely miserable after and him feeling guilty, I want to do the same with my fiance.  It has been a year of misery for me and my doctors aren't taking me seriously either and they just keep my on metrogel and antibiotics, and it is like I know what to do about it more than they do.  I'm so thankful I found this post. I am going to try everything you suggested, please keep posting updates!

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    • Posted

      Ginger, Your post was literally as if I wrote it, all the same symptoms, all the same research, all the same frustration. I ordered the Act-gel, I also saw a lot of research on the drug Nifuratel which is sounding like the most effective drug on Atopobium Vaginae. Which for whatever reason is being used in other countries but not in the US, I was taking femdophillus daily and thinking that was keeping the BV away but I also wasn't in a relationship. So I went 18 mo. without an infection but also 18 mo without sex. Got BV within a week of the first time I had interourse in 18 months. It came on hard and fast and painful. Ugggghhh. So my question to you is, The last time you had the BV what did you treat it with? How often do you use the Acti-gel? and what are you currently doing as your regimen? I appreciate your post and vulnerability. I work in an ob/gyn office and get 1-2 women a day calling about BV, they are frustrated and embarrassed and I'm tired of feeling like we could do more and we are dropping the ball.

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