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:

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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