Chronic BV. What Ive learned (all in one place)
Posted , 294 users are following.
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 &/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 &/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.
41 likes, 384 replies
anne20104 Ginger_USA
Posted
I was a little hesitant to write because I can tell you've spent so much time on this helping other people, but you seem to have stayed involved and I, for one, (and it looks like many others) have really appreciated your taking the time to input all of your data here.
I have wished from the beginning that this site hadn't taken away most of your links, but I think I have been able to follow pretty well even without them.
I have had what I think is possibly BV since July 2014. My husband and I have only been able to have sex twice since then because it hurts too much, but he is being patient with the situation. I have become so depressed and want to cry at the drop of a hat right now because I feel so hopeless. I have a dr's appointment with my obgyn tomorrow and I'm hoping beyond hope that she will be able to make a firm diagnosis, but honestly, I'm not very optimistic. My main symptom has just been burning- kind of like someone dipped my genitals in mild to moderate jalapeno juice. It has been so incredibly distracting, I don't feel like I can live my life anymore. Home tests for pH show that my pH is elevated. Initially, back in July, I tried to treat myself with yeast infection things- not having had anything remotely wrong down there before. So I did that for about a month- yogurt tampons, probiotics, etc- then in August, I went to the dr and she put me on Metronidazole antibiotics for 10 days. I was so reluctant to take them because I didn't want it to mess up the natural flora in my body/gut, but was sort of hoping it would do it. Then, the burning and pH problem came right back and it has been getting worse or at least staying the same ever since.
I'm getting some real pain on my labia in addition to the burning, but that is new. No real discharge, no really bad smell, though sometimes fishy.
Since reading your post, I've taken the Femdophilus probiotics, after having been on the Vaginal support ones. I don't know if these are doing any good, but I've been taking them. I just haven't been able to get better
The one question that I have that I'm not sure you'll want to answer is what age you are? You mention the progesterone issue. I'm 43 (going to be 44 this year) and I'm wondering if I should have my dr. test my progesterone levels, too. I feel like I would be young for this, but my libido and sex drive, which used to be extremely healthy, has plummeted in the past year and a half, so I think that something has probably happened with my hormone levels- whether testosterone, progesterone, estrogen, etc..
This has been the most visceral, aggravating problem I have ever had. I go through in my head that I'd rather have flu for 2 weeks straight, or something broken, anything other than this.
I know you're not a doctor, and I know you can't tell really from my post, but does your gut reaction seem to point in the direction of BV for me? The biofilm that I've read about BV has been scary, and the vaginal scraping for yeast in the skin that don't come out has also been scary.
My dr has put me on a product called Fem pH, which is supposed to be a soothing, vaginal jelly that sounds a lot like the Multi Gyn Actigel. It does help initially, no doubt, but then my problem comes right back.
I'm desperate for a good appointment tomorrow. I sent my dr. 2 faxed pages of details about my symptoms, etc. and I'm so worried that she's going to want to put me on a heavy, strong antibiotic!
I'm terrified that this will turn chronic. At least I know you've been able to get over it and maybe I can, too. I've struggled with it now for 6 months and I can't imagine it going much longer. I feel like I'm losing my mind.
Thank you for any input, Ginger, and thank you for the time you've taken on this site.
Ginger_USA anne20104
Posted
I have been prescribed Fem pH actually. Honestly, I swear it didn't work as well as the Actigel. No idea why.
If you google some of the excerpts from my original post, you will find that some sites have the links in tact. Originally I posted it in as many places as I could find. This is the only place where it has remained active. If you can get an article about the atobium vaginae that will probably be the most influential.
You might consider taking the antibiotic and starting the probiotics at the same time. I did that a couple of times. Whether you do that or not -- whatever you're taking of the probiotics, double it. Flood your system with them.
I know you are frustrated, depressed, and you feel hopeless. You can get well. It won't happen fast, but it will happen. If this doctor won't listen to you, go to another one. Wash, rinse, repeat. And absolutely worse case scenario, you can cure yourself without a doctor's help. It's in your hands, and that should give you hope.
Be well.
pam77062 Ginger_USA
Posted
asamantha anne20104
Posted
About 15 years ago I was having severe pain during Intercourse - After over 6 months of suffering I went to a gyn and they tested me and found I had an infection (I can not remember what it was - I had no smell so I don't think it was BV) what she gave me cured the infection - she also prescribed Cromolyn YN So 1% Glaxal which took away all the burning sensation on my Vulva - it was such a relief - it heals skin in a day or two and took the burning senator away almost immediately so I could be completely free of pain all day and during sex.
I hope you are better now and if not I hope this helps!
anne20104 Ginger_USA
Posted
My gut is telling me that if the dr. tries to put me on antiobiotics again, that I should not do it. But then, it will be hard to justify not taking what the dr prescribes since we spent the money for me to go get a "diagnosis". My husband and my best friend both think that I should give the dr.'s diagnosis a chance (future diagnosis, that is- I'm assuming that's what she will do and I may be wrong) and take the antibiotics, but they are not as open to homeopathic/integrative medicine ideas. I, on the other hand, am, and it scares me what I'm doing to my body with all these drugs.
I'm sorry, I'm venting now and not making much sense. I'm gripped with some anxiety and my vaginal area is really burning right now and I just feel terrible. I will stop typing and might stop in tomorrow after my appointment.
patricia91490 Ginger_USA
Posted
Ginger_USA patricia91490
Posted
anne20104 Ginger_USA
Posted
anne20104 Ginger_USA
Posted
MarieGermany Ginger_USA
Posted
DMVisAwesome Ginger_USA
Posted
For others that are on here reading, I'll go over my story. When I was first figuring this out I liked reading details to look for similarities. So, if you don't like detail I suggest you stop reading now.
I'm a lucky one, my BV never causes discomfort, just discharge changes. My discharge gets malodorous (such a benign word for how awful it smells), thin (closer to the consistency of water), and there's a lot of it! The color is usually about the same for me. Maybe a little more opaque...but nothing I notice til I have the other signs. When it's bad I can smell myself throughout the day. I have discovered that wearing a pantyliner makes it so I only smell myself during bathroom breaks. It's always difficult balancing being self-conscious of my odor and wanting to ensure my vagina gets air. The pantyliner also helps the discharge from soaking through my panties to my pants (it's when this happens that I can smell myself).
My "flare ups" are always after sex. No rhyme or reason to it either. Condom, no condom, oral sex, no oral sex, shower right after, no shower. Doesn't seem to matter. It's random. (at least that's how it was at the beginning, I don't take many risks anymore). My first infection was after the third time I'd ever had sex, or sexual contact of any kind (still with that guy too!). My first 4ish infections I got metrogel for 5 nights. It worked but I would get infected again after 6ish weeks.
Then I got 2 back to back infections. That's when I started looking into things. I started taking the Reuteri daily (still do). I tried to cut out sugar and white carbs (stopped this when I got another infection, gonna try it again). Changed soaps (i use dove bar soap for sensitive skin). When I got a third infection in 5 weeks my PCP gave me oral metronidazole (Flagyl)....500mg 3x/day for 7 days...believing that it never cleared the first time. We repeated that for the next 4 or 5 infections (every 4-8 weeks). I would up my probiotics to 2 pills per day and at least one yogurt. Had relief for 4-5 months with abstinence (broke up with the boyfriend). During the break up I was downing probiotics hoping to get my good bacteria count up and normalized. Got back together with the boyfriend, and within a month of having sex again, got another infection. At that point my PCP said to see a gyno.
So, my gyno gave me 10 days of oral metronidazole (Flagyl) 500 mg 3x/day. And yes, it tastes awful, makes food taste weird, nauseates me (I know to ask for Zofran now), and constipates me. I upped my NW Reuteri game to one per dose of antibiotics (2 hrs after the antibiotics) and yogurt/kefir/whatever 1-3x/day. I simultaneously did 21 days of a boric acid suppositroy from the compound pharmacy. Went in for a follow-up to confirm it cleared. It had. So I started a 6 month suppression treatment of metrogel 2x/week. This essentially gave me a 6 month yeast infection. I was taking 2 NW reuteri, 1 culturelle, drinking/eating yogurt/kefir/whatever 3x/day, without relief. I did yeast treatments (whatever generic was on sale at the drug store, plain yogurt didn't work fast enough for my needs) once or twice a month to try to keep my sex life alive but it is difficult planning so far ahead to accommodate both our schedules (we both work rotating schedules nights and days) and my medicine schedule.
But thinking it was a temporary 6 months and would be worth it, we dealt with it. Again, I'm super lucky my yeast infections aren't uncomfortable, strictly discharge changes.
After the second time we had sex post-treatment, I got another infection. Went back, my gyno looked confused, he ran all the STD tests hoping it was something else, but it was still BV. He put me on a 5 night metrogel course. Confirmed it cleared. Then we began another suppression method. A compound pharmacy suppository of 500mg metronidazole and 100,000 units nystatin once/week to treat the BV and prevent the yeast from taking over.
I am currently in the 3rd month of this treatment and got another infection. I called my doctor and he prescribed another 5 night course of metrogel and if I don't have any problems, then I resume my once weekly metro/nystatin suppository. If not, I go in.
I'm looking into alternatives because if I got an infection mid-treatment (which hasn't happened to me before), then I don't see this working long term.
I've been hoping I was one of those girls that a suppression method actually works. But I'm having my doubts now. I'm going to have to commit and make even more lifestyle changes.
Currently I take probiotics, NW Reuteri in the morning and evening (aka when I'm near my fridge) and eat a yogurt/kefir during the day.
I am in the process of switching to ALL 100% cotton panties (I discovered recently my panties were 95% cotton 5% spandex....not sure how big a deal it is, but I'm not risking it). I rarely wear thongs (maybe once a month) but I can deal with underwear lines. Bought some cotton long underwear to replace my under armour spandex (in the most upset about this....I'm also a lot colder).
The amount of hygiene that goes into my sex life is ridiculous...we both shower before and I shower after with my dove soap, we both use Listerine before, if we use mouths on genitalia there is a wiping process prior to genitalia on genitalia contact, and we use condoms.
After reading this, I'm next looking into laundry detergent. I'll start doing all my clothes and have my boyfriend do at least the sheets and towels fragrence free. Does anybody know about softener sheets? Do those exist fragrence free?
And I'm going to have to bite the bullet and change my diet. I did this once before and it was HARD for me. So as soon as I got another infection I quit. But I'm realizing this is long term and that it could help long term so I need to be better about that.
I'm considering seeing a homeopathic doctor about this to help guide all my lifestyle choices. Regular doctors aren't good at that.
I think I'm going to finish off this suppression treatment and integrate the yougurt/NW reuteri probiotic powder suppository. Every other day or so...then when the suppression is done continue the probiotic as maintenance 1 or 2 times a week/post-sex prophylactic. See where that takes me.
I'm interested in the hydrogen peroxide douches.....who has experice with this? what did you do? Were you under a doctor's care or self-treating?
Up til now I've been hesitant about using a probiotic (besides plain yogurt) vaginally fearing whatever sugar is encapsulated will feed the bad bacteria....I'm glad to hear that Ginger's doctor was part of that decision with the yogurt and powder.
Ok....I have sufficiently talked your ear off. I'll stop now. Cheers to maybe one day having a normal sex life! I've never had one of those before!
DMVisAwesome
Posted
LM24 Ginger_USA
Posted
My GYN has been pretty useless, acting like it's not big deal that I'm having to put up with this. As a woman, I would expect her understand that it's not okay for this to be dismissed as easily as shoulder shrug and a "Oh well, it happens" - how is that good medicine?!
I'm going to print out your plan and give it a shot. I was already on the right track, knowing I had to address PH levels and vaginal flora, but not sure exactly HOW to do that. You've given many of us a place to start ... and, honesty, the empathy and understanding we haven't gotten from our doctors. I hope I can fix this and will keep close notes, so that I, too, can pay it forward.
FYI Info on the douche: I use 2 parts peroxide with 3 parts water - I use the regular peroxide sold at the pharmacy and distilled water, and apply it using the "Faultless Tiny Kit Reusable Douche" bag. I have found it to be effect doing it 2-3 days in a row, though my symptoms have been mild in the scheme of things (discharge and mild to moderate odor. It's possible that for more severe symptoms, you might want to try a 1:1 ratio for the douche and do it an extra day or two. Play with it. I did ask my GYN if this was safe to do and she said that, while douching is not recommended when the vagina is healthy, in the case of BV, it can be helpful and is safe.
LM24 Ginger_USA
Posted
Ginger_USA LM24
Posted
Picklepie Ginger_USA
Posted
Anyway.... I know this sounds crazy from a complete stranger, but have you had any luck sourcing your actigel? I'm from the UK and can seem to get it with ease. I'd love to be able to help you if I can. x
bee18 Ginger_USA
Posted
LM24 Ginger_USA
Posted
Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages