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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Antibiotics vs probiotics..

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Antibiotics vs probiotics..

Post  lavrose on Tue Mar 12, 2013 12:40 am

Because Ive had good results and tend to employ both antibiotics and probiotics in my healing regime, my thought on antibiotics is this... For most of my life I was against them and very seldom used them. Until I started getting these indomitable infections that would not go away with herbal, homeopathic treatment alone, but sometimes it would, but other times, they would not, and then I would rsort to antibiotics which would cure my bacterial infections quickly, or not so quickly or easily as with my IC. I still use homeopathic medicine, and remedies all the time, ,and I do control my Vulvodynia symptoms with oil suppositories and AZO yeast ,and other supplements, that have changed my life for the better(by the way. Outside my v battle, lol Smile

I think really its all about curing the infection, then rebalancing the flora. The flora gets depleted and yeast takes over after you kill the bacterial infection, which can many times, not easily be cured, only controlled with alternative medicine. (Im speaking from experience)

There have been times Ive cured simple bladder and vaginal infections with herbs, but other times, I needed something more. But then again, there are many problems with overuse of antibiotics.

i cured my IC with massive doses of antibiotics and it was the only way.

i tried everything herbal. Everything. It was some kind of superbug, fluke or something.

Yes, antibiotic resistance IS a growing concern and problem.

YES, people develop real problems from overuse of antibiotics.

I even did some research on C DIFF, a horrible, incurable, irritable bowel syndrome, to where the person becomes very ill, and even dies, from basically being unable to digest food properly, cuz they killed out all the beneficial bacteria in their colon, and it was never able to recolonize, from being on too many antibiotics for too long. The only cure for it is "fecal therapy" no joke, google this! Where they ask a close relative to donate fecal matter, and they put you under and spray the walls of your intestine with it, and the person is completely cured. The bacteria is replaced, but its the only way. The bacteria colonies in our body is something unique and something we are born with to make things work, thats how important it is. Theres also videos on youtube about fecal therapy, lol! But its an interesting example of flora.

When I was a little girl, I was sick alot, and was on many doses of antibiotics, for long periods of time, including for acne as an adolescent. I sometimes wonder if thats why im having so many problems now. Im still not sure.

However, they have helped me before. Sometimes I wonder, if my needing vaginal acidophilus suppositories for the rest of my life is because I killed out all my flora from all the antibiotics Ive taken. Who knows.
However. ive had this problem all my life, even as a young adult, being against using antibiotics.
I dont know what Im trying to say. These are just my thoughts on why this is happening, happened to me. Just trying to make sense of it all, as this disease stole my relationships, and ruined my whole young adult life, and barely holding on to the relationship I have now.


Last edited by lavrose on Tue Mar 12, 2013 2:36 am; edited 2 times in total
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Post  lavrose on Tue Mar 12, 2013 12:40 am

I would always usually get yeast infections after every antibiotic treatment. and reading online, people that have never had a vaginal infection before would come down with yeast after a round of antibiotics. So, def, its very hard on the body. it was like a ping pong effect. Going from a bacterial infection, to yeast, the nitemare was never ending. Antibiotic resistance is a very real problem now. Thats why doctors dont hand them out like they used too, it was very hard to get my IC treated::Heres an article on antibiotic resistant UTIS as follows:::

{{{{{{"" Superbugs in chickens could be an underlying cause of antibiotic-resistant bladder infections in 8 million women, according to a new ABC News report.

In the ABC News investigation, McGill University researchers said their research suggests drug-resistant E. coli in chickens may be transferred to humans and manifest as the hard-to-treat bladder infections.

Antibiotics are usually given to chickens to promote growth and prevent disease before they're slaughtered and sold in stores, ABC News reported.

Blisstree.com explained how these antibiotics could contribute to drug-resistance:

Chickens are injected with antibiotics from day one to help them grow bigger and faster and protect them from diseases. The problem is that these are the same antibiotics sold in the U.S. for humans to treat bladder infections, among other conditions, which means our bodies eventually become resistant to the drugs because we're getting so much of it.

"What this new research shows is, we may in fact know where it's [the antibiotic-resistant bladder infections are] coming from. It may be coming from antibiotics used in agriculture," Maryn McKenna, a reporter for Food & Environment Reporting Network, which conducted the investigation with the network, told ABC News.

However, the National Chicken Council said that there is no proof that the drug-resistant bacteria that cause bladder infections actually came from the chickens. The council said in a statement:

"The studies in question make the assumption that humans carrying these E. coli acquired them from poultry. The strains did not originate in poultry and likely entered these farms from sources originating in human communities. Perhaps most importantly, the potential transmission of antibiotic resistant E. coli to humans says nothing about why these E. coli are antibiotic resistant in the first place. The resistances observed in these E. coli are common globally and are unlikely to be attributed to chickens given the few antibiotics available for use in poultry in the U.S."

McGill University researchers had previously reported in the journal Emerging Infectious Diseases that the E. coli in the chicken was much more genetically related to those of human urinary tract infections, compared with the E. coli in the beef and pork. That study included E. coli testing of 320 samples of beef, pork and chicken.

"We suspect that the transmission is occurring the same way other foodborne agents are transferred," study researcher Amee Manges, Ph.D., of McGill University, earlier told MedPage Today. That means transmission of the bacteria may occur when you don't handle food safely or properly, you have kitchen contamination or you undercook the chicken.

Urinary tract infections occur when bacteria, fungi or viruses infect the urinary tract, with bacteria being the most frequent cause of infection, according to the National Institutes of Health. The body is usually able to remove bacteria from the urinary tract, but sometimes they are able to live there and grow, causing an infection.

Bacteria found in the bowel are the usual culprits for UTIs, with E. coli causing most cases, the National Institutes of Health reported.

For more on the new McGill University research, watch the ABC News video above.}}}}

Right now Im having really great luck with probiotics. Right now, Im taking::

Femdophilus (Jarrow brand)

and PB8. Both capsule form. I insert Both into my vagina once, or twice a day, sometimes I will douche with betadine in the morning and after sex, Im planning on looking into douching with Chlorophyll after sex as that may be gentler on the tissues. Def doing the vaginal probiotic for the rest of my life, I insert either a PB8 or a femdophilus after the shower in the morning. I also take a femdophilus capsule in the morning orally,and that prevents UTIs for me, it has for about 4 years now.

When I got interstital cystitus last year (nitemare bladder infection from Hell) I had missed my femdophilus dose for about 3 days and was having sex. I will never do that again, ever. I take a capsule morning AND evening, if Im sexually active.

There is another probiotic Im going to be looking into, that cured one womens vulvodynia completely, taking one capsule orally called:: Bioceteuticals SB Floractiv::

Website info as follows::BioCeuticals SB Floractiv

Saccharomyces boulardii (SB), a subspecies of S. cerevisiae, is a non-pathogenic biotherapeutic probiotic agent that supports the establishment of friendly bacteria in the gastrointestinal tract (GIT). In the GIT, SB increases the production of secretory IgA (slgA) and short-chain fatty acids, and the activity of the brush border disaccharide digestive enzymes. It also discourages the growth of harmful micro-organisms and reduces digestive inflammatory mediators.1-3

SB can be taken in conjunction with other probiotics and is eliminated from the body when supplementation ends.

BioCeuticals SB Floractiv may assist in the temporary relief of medically diagnosed irritable bowel syndrome (IBS) including symptoms of bloating, flatulence, and digestive discomfort.
SB is not affected by antibiotics and can be used to minimise antibiotic-associated diarrhoea and candidiasis.
Does not require refrigeration; can be used for the relief of symptoms of travellers diarrhoea.

BioCeuticals SB Floractiv Ingredients

Each Capsule Contains:
Saccharomyces cerevisiae (boulardii)
(Contains lactose 28.75mg) 250mg

I guess this one is different from the run of the mill probiotics, it actually has a yeast in it that kills yeast.
Also, one gal on a website was talkin about a brand of probiotics that has L crispatus.

Hers a copy paste of what she said:::

Clinical Trials for a REAL cure for BV and where/why to BUY L. CRISPATUS

LISTEN UP EVERYONE! I've been doing some research, and I honestly don't think that Acidophilus is what we should be taking. According to the research, a lacto bacteria called L.crispatus is what we should be trying to replenish ourselves with instead. This is because a healthy woman's vagina is crawling with L. crispatus, which is one of the many good bacterias found in the vagina. It produces h2o2 and L. acidophilus does not. There is a company that is working hard to get pure L. crispatus suppositories on the market. But,in the meantime, I only found one probiotic supplement that contains L. crispatus. bacterialvaginosisdiary If anyone tries this out, please let us all know how it goes. I'm waiting on mine to arrive in the mail any day now.

Next month Im going to be trying "Flora Fem" Suppositories, they are Expensive. But they sound great, and Im having terrific Luck with what Im doing now, so I think Probiotics is the answer.

I think a round of really strong antibiotics (and Ive actually gone to the emergency room and got treated for Chlamydia and Gonerea, even when I didnt have it, just went in there complaining of a vaginal infection,and they treated me for that anyway, and that would sometimes knock out my vaginal problems for a few months, until it came back again Smile) Good ole' Vulvodynia, my bestest friend Smile
After antibitics, vaginal insertion of probiotics, and mega doses orally.

Ive done alot of research on effective probiotics for women as follows::

Primal Defense
Three Lac
Floraster
Femdophilus, and
Ultimate Flora vaginal womens support (pink Bottle)
Syntol (Arthur Andrew medical)
Benebiotics

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Re: Antibiotics vs probiotics..

Post  Alana3 on Tue Mar 12, 2013 10:30 am

Are you working with a doctor or just looking online and seeing what has helped people you're on a ton of stuff how do you know what's helping you? And ic isn't bacteria related are you sure you didn't have a uti? I had what they thought was ic and it ended up being a horrible uti that wouldn't go away. Im all for vitamins and everything but every time I read your posts you're putting a lot of stuff in your body if it works great but damn lol I couldn't do that especially with the antis too much and im not trying to be rude im,just trying to understand

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Fri Mar 29, 2013 5:36 am

I appreciate all the information you provide, lavrose. Yours are some of the posts that I always check out, because I believe I have some of the same issues.

I just want to say @Alana, it's great that you have had a lot of improvement, or feel cured. But every single one of us has a different healing path, and the longer I go with this illness, the more I'm seeing that the causes can be SO different, that a treatment that heals one person may destroy someone else. There are so many, many things that science does not understand about what causes either IC or vestibulitis/vestibulodynia, and I actually know that lavrose is ahead of the game. Cutting edge doctors DO believe that there could be something infectious going on here -- including a doctor in Southern California who does integrative medicine who I might see, who treats pelvic pain disorders like IC and vulvodynia sometimes with antibiotics. I just read a transcript from a lecture she gave saying that she's absolutely blown away by the fact that about 41% of her vulvodynia patients test positive for Lyme Disease, and their vulvodynia goes away with long-term antibiotic treatment. I have just tested positive for Lyme Disease, and it may have been in my body for about 30 years -- I've had vulvar pain for 27 years. It may not be the total cause of this pain, but an infection that gets into all your tissues and causes inflammation will cause you to then get susceptible to other opportunistic infections, like yeast, mycoplasma, etc., all of which live IN vaginal tissues and cells, so you can't find them on tests. I can't stand the idea that all these negative cultures in myself and other women may be a ton of false negatives!! My pelvic pain therapist said she worked with a gyn who agreed that we just don't have the technology to find these infections, and yes, they probably exist.

Sometimes, doctors don't know everything, and patients can be their own best allies. If I just went with what doctors said I should do or not do, being under their supervision to find help for myself, my life would be over now. So it's great that lavrose does her homework and has helped herself so much. Doctors don't know crap about the kinds of things lavrose does. I believe a lot of women are putting themselves under the knife, using steroids that hurt their tissues, and are suffering endlessly because they only go by what the standard medical profession is endorsing at this time, which is in the Dark Ages of understanding these syndromes. The most foreward-looking doctors don't ignorantly assume what causes either IC or vulvodynia, and many out there do get results with antibiotics, but it can't just be a short course, and so the problem is side effects.

Also, Alanna, do you also have any other health problems? I'm just curious. Because if I'm not mistaken, you've had a vestibulectomy? That is not recommended for women who have many other auto-immune like conditions, as the success rate is low for women with other chronic disorders. It's only really recommended in uncomplicated VVS, and all the specialists I've seen say that MOST of their patients have other health problems with their immune systems. It's not even a recommended procedure for essential vulvodynia by itself. In myself, I believe my vulvar pain is only part of a global systemic issue that's very complex, involving many aberrations (so, the need for a lot of nutritional and other support).

I hope lavrose is not discouraged about posting her links and experiences -- thank you for taking the time to post, and the great leads, lavrose. I don't think a lot of people in the vulvar pain community are getting to the root of the reason why the vulva is sick, and that really is why a lot of women get no relief. I can't wait for research to catch up to me, to start trying things, especially when they do show some relief. If I waited for doctors to approve the Tanafem douches/tea tree suppositories I've done that have relieved me, I'd be waiting forever. Excuse the rant. I just feel that this should be a place where alternative ideas are welcomed and not put down, and I frankly don't think much of doctors to be right or steer anyone right. If you are one of the lucky few who doctors have helped, that's great.

Lavrose, I'm looking into treating my Lyme disease now. I'm not going to post about the topic until I start seeing some improvement. But you may want to get tested for that. There are a few good labs in this country that focus mainly on Lyme and tick-borne illnesses, like Igenex in CA. (I'm not affiliated with them in any way.) It can cause widespread inflammation in the body, and the bladder and vagina can be target organs mirroring the inflammatory process in the whole body. But you have to find an LLMD (Lyme Literate MD), who tests, diagnoses, and treats a lot of lyme patients. Unfortunately there is HUGE debate between infectious disease docs with a conventional mindset about lyme (which they don't believe can live for YEARS in the body) and LLMDS. And the docs who do believe in it are often not covered by insurance because they have such involved treatment strategies, with antibiotic, herbal, and many other approaches. You may want to check out ILADS, the International Lyme and Associated Disorders Society. Most standard lyme tests (which I got years ago, for my fibromyalgia, to see if it was lyme) are worthless. I tested negative on that, back then. Now to find out I'm positive with a more sophisticated lab. Who knew.

I did try saccharomyces boulardii orally once and it gave me a HORRIBLE yeast infection. It's a cousin of baker's yeast, and if it's saccharomyces cerevisiae, as listed in the article, it IS baker's yeast. People who are intolerant of yeast/allergic to yeast I think could get really bad yeast infections from this. It was just my experience, but one of the worst infections I've had in a long time.


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Re: Antibiotics vs probiotics..

Post  Alana3 on Fri Mar 29, 2013 11:53 am

Actually all I was asking was how do you know what's working when you change so much so often? And providing my feedback which is what this forum is for. If it works for you go for it. Personally I couldn't take that much and wonder what's working. I take probiotics and all I was saying was antibiotics screw me personally up more. Yes I've had a vestibulectomy and I know it's not for everyone. But that's what helped me personally. Sort if that was offensive but it wasn't meant to be I was simply asking how you know what works when you're taking so much. I was in the doctors are idiots phase too untine who worked... For me. Persistence paid off but even before I was take this and that and I would feel good and than shitty again because there was.simply too much going on. From my experience. I tried treating myself id you can do it good but when I had my surgery it cured me im good now and that particular doctor didn't do anything harsh or do anything wrong but it took time to find him. Like I said on my post I was trying to understand not be attacked on my opinion or what ii have Don differently. And saying personally I couldn't put that much stuff in my body and know what was working and what wasn't. Vulvodynia socks pretty bad if it works I obviously want to know about it but I would rather not burn my junk as was mentioned because I was using too much of something. in a different post. But please do not assume that I don't understand about my condition because I do very well. Im not sure what your attack was on since I was saying how do you know what's working not don't do it I would never tell someone not to do something even if I personally had a problem with it. Obviously it's different for everyone and I have plenty more problems then vv but hey I deal and did what I thought would Work for me. I didn't want to over medicate myself or try 30 different wharves to put wherever. I did that it wasn't sub and even my doctor admitted (not now) he wasn't sure what did what. I do take vitamins I think that's smart but so I think it's gonna cure anything probably not. It may help a little but I wanted fixed.

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Re: Antibiotics vs probiotics..

Post  Alana3 on Fri Mar 29, 2013 11:56 am

And sorry for the spelling im on my phone

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Re: Antibiotics vs probiotics..

Post  jen007 on Fri Mar 29, 2013 12:47 pm

This forum was not made for arguments ladies. We are here to talk about vulvodynia and try to help each other by giving advice and discussing personal experiences. We are all free to post what ever we'd like to post here, but we shouldn't waste it trying to tell people what they should and should not say. Alana and Lavarose can post what they'd like, just like everyone else. We all have our own opinions and stories to share. If you don't like what someone says don't pay attention to it and just respond to the post/ person you're interest. For most of us this forum is an outlet to express our feelings on an incurable disease, not a place to argue over whose treatments are better than the others or who has suffered long enough to know what vulvodynia is all about. The bottom line is none of us wanted this disease and we all want to find a way to feel relief. If all those treatments Lavarose looks up work for her, then thats great! If a vestibulectomy worked for Alana that is also great and a blessing. Even though our pains and symptoms are all different we all are suffering from the same disease. I really hope conversations like this no longer continue, because we all need each others help.

-Jen

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Fri Mar 29, 2013 7:31 pm

jen007 wrote:Alana and Lavarose can post what they'd like, just like everyone else.

I totally agree. And I was doing just that, myself.

I don't want to belabor this. I am not by nature an argumentative person. And if I have misinterpreted anything, my apologies. But I found a subtle dismissiveness about the response/vibe to the OP, who was only sharing information with us. I wanted to support the OP because I don't see many responses to her posts in general, and responses have been a bit dismissive before (I've just noticed that - something that vaguely reminds me of doctors who frown upon my outside-the-box self-treatment), but since her posts HELP ME, I want her to not be discouraged. It's easy to feel like a black sheep in a community where your problem is already freakish.

MY experience is that being on a variety of different things is sometimes what this illness requires, and furthermore, "just looking online" has led to discoveries that doctors couldn't give me. This can be a multi-faceted illness, so a multi-faceted approach is a MUST. If you have a bacterial issue, you have to treat the bacteria, but you also have to strengthen your immune system, as well as replenish the friendly bacteria, and maybe also use substances that soothe the area, as well as something for pain. So yes, that may sound like a lot of stuff to take at once, but they are all synergistically working together. This is not about taking vitamins, which most healthy people take. God, do I wish it was just about taking vitamins!

I also wanted to correct some misinformation. Alana said that IC is not infectious which I had to correct, factually. Part of the problem we face in these illnesses is the ignorance of doctors -- so as an educated consumer who has been around a long time (I'm not trumping my experience to be arrogant, but to say that more time involved in this = more exposure to more theories) ought to help educate other patients. No one knows what causes these inflammatory illnesses that end up being nerve inflammation. But Lavrose has said she was diagnosed with IC and that antibacterials have helped her heal, so I think that should be an eye-opener for people, not dismissed.

Finally, I actually was asking Alana a REAL question. Not to be confrontational, but because I want to know, and this seemed as good a place as any: do you have any more widespread immune issues/health issues, or did you just have simple vulvar vestibulitis syndrome (VVS)? Because that indeed would lend itself better to the monotherapy of surgical excision. But if you have other health problems, just using one therapy or therapeutic substance is usually not adequate, even if you start with one at a time to make sure they're not reacting badly with you.

So, that question stands. I really do want to know if you feel cured of VVS even if you have more disorders than VVS.

I certainly agree that we all have our approaches. But I highly mistrust doctors and their knowledge (even though I've handpicked a few to work with, and that's more for their compassion, not their scientific knowledge, I'm still looking for someone who is more cutting-edge there), and still think our own intuition, diligent research, and self-knowledge is our best friend. I have seen 4 of the leading vulvar experts in the U.S., and you know what? Each of them said something different, and there were contradictions. One of them did something that has pretty near ruined me, even though he is highly respected and has a devoted patient following (and he's one of the kindest doctors I've known, who I trusted). So that tells you something about how much we have to trust OURSELVES.

Just wanted to support that for the OP.

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Re: Antibiotics vs probiotics..

Post  Alana3 on Fri Mar 29, 2013 8:15 pm

I have tmj vaginismus possible fibro back/hip problems had endo and ic thrown at me plus cysts so yeah I have a lot of other problems too but my vv is fine now. And my comment about just online was not meant to be bitchy at all in fact my entire comment wasn't meant as insulting but a chance to learn about someone elses experienced. Seriously I never said don't I asked why.... To understand someone elses experience. From mine I found the more stuff I used the more complications occurred hence I asked how do you know what works and doesn't
...

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Re: Antibiotics vs probiotics..

Post  jen007 on Fri Mar 29, 2013 10:40 pm

Just out of curiosity, what doctors have you seen? I've been with doctor Andrew Goldstien since this past summer. He's pretty great, to me anyway. If you haven't seen him and live near by I highly recommend him!

-Jen

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Re: Antibiotics vs probiotics..

Post  Alana3 on Fri Mar 29, 2013 10:46 pm

Or Dr Trabin! Lifesaver

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 7:53 pm

Alana3 wrote:I have tmj vaginismus possible fibro back/hip problems had endo and ic thrown at me plus cysts so yeah I have a lot of other problems too but my vv is fine now. And my comment about just online was not meant to be bitchy at all in fact my entire comment wasn't meant as insulting but a chance to learn about someone elses experienced. Seriously I never said don't I asked why.... To understand someone elses experience. From mine I found the more stuff I used the more complications occurred hence I asked how do you know what works and doesn't
...

Tone can be hard to read on the internet. Thanks for clarifying.

I'll let the OP answer to the question then, but for me, I think there's merit to the concern that taking multiple things could confuse the picture, and yet if you have a problem with several causes, each cause has to be addressed. For instance, if you have recurrent yeast, it makes sense to take Diflucan to kill the yeast, but it also means you have to work on fixing your gut, because that's where yeast in the vagina comes from, and chances are your gut is compromised. Also, the immunity overall is not good, so taking supplements to support your immunity are important. Also, if like me, you have heavy metals in your body (I have too much mercury), you have to get rid of that because that compromises immunity. So it would be foolish to only take Diflucan to kill the yeast, only for it to return when you haven't addressed all these other things concurrently. That would result in thinking, "Diflucan doesn't work for me" when in fact, that's not accurate; it is a medication for only part of the picture and since you're dealing with a multifactorial problem, you need a multifactorial solution. Sometimes you need things to work together to "know what's working", as the whole of the program is what's working or not. I don't think any of us have something so simple that it can be boiled down to a "monotherapy." But it does take a lot of trial and error. And wasted money, sometimes, which is really depressing. I also think if you keep hopping around from one thing to the next without giving a set number of things time to work, that's where it becomes confusing (been there, done that, out of desperation.) It has to be a systematic approach. Naturopaths have helped me more than MDs.

That's one reason I, personally, am very skeptical of any doctor who is not looking at the vagina/vulva as one part of a whole body dynamic where various functions are gone awry. If you have a lot of the other syndromes and pain, something is out of balance and causing inflammation in other tissues, so I don't trust an approach that just seeks to remove the hurting organ. I think looking at the underlying biochemical imbalances and functional abnormalities and their causes is the only promising future of this field, and there are some who are now thinking this way. I think the day when they just give you amitriptyline for pain will be seen as a bandaid, and if I dare say, removing the skin will be seen as like taking out your sinuses because you keep getting sinus infections (though I don't think surgery -- which is a STRUCTURAL treatment -- will ever stop being used for FUNCTIONAL problems, because surgery is big $$$$. Sorry, I'm a cynic in that regard, but surgery is very lucrative to docs and that paradigm isn't going away any time soon. Don't mean to offend if you feel surgery was your cure.) The sinus analogy is accurate, though, I think -- I had my adenoids removed when I was a tot, because I kept getting ear infections. The adenoids are lymph tissue which respond to protect your immune system from allergens and germs. They would swell up, blocking the passage to the ear, thus causing fluid to build up in the ear. So the answer from a surgeon's perspective was to just remove the lymph tissue which was so inflamed. My parents didn't know any better, but I've heard of parents who found environmental doctors who discovered allergies and other things affecting their child, fixed those things, the adenoids were happier, and the ear infections stopped -- without surgery.) Yes, it did stop my ear infections, just as the doctor said it would for me, and my parents praised the doctor. But now I'm that much lymph tissue less, and it was only protecting me and giving signals that something was wrong.

Basically, that was like killing the "messenger." These are just my life experiences and take-away lessons about the way medicine works. I think you get these specialist doctors and researchers and they all cut the body up into little parts that are separated from one another, so a vulvar problem is just a vulvar problem, to be fixed in that organ alone, and all these other conditions are not relevant in their eyes. To me, that model is wrong and will not lead to real breatkthroughs.

I think specialists are a double-edged sword: on the positive side, they've seen hundreds or thousands of cases, are up on the latest research, so have a ton of clinical experience on a very specific area. On the down side, they have become very narrowly-focused and often arrogant. There's too much certainty. As my doc says, "they are hammers that only see nails."

Also, if you've had IC, or have it -- were you diagnosed with that? -- maybe this infection theory has some merit for you. All the conditions you have, have an inflammatory component, and simmering infections can do that. Just something to think about.


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Re: Antibiotics vs probiotics..

Post  Alana3 on Sat Mar 30, 2013 8:10 pm

Im fine everything is fine with me and no I don't have ic they thought I did but it was a uti no big deal. I don't know my doc doesn't just look there he looks at everything. Im good with not taking anymore medicine than I have to lol maybe you've had bad experiences but everything I've done with my doc he's looked at everything. And I feel good but I refuse to take any medicine been there done that blah didn't Work for me again if it works for you great. Im done with this though because were just saying the same thing over and over lol and again not bitchy but you don't like what I say lol

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 8:23 pm

It seems like you're taking this very personally. I am simply conveying some thoughts about what I see wrong with the way the medical profession handles and views our problems.

I tried to give you my advice on how I deal with many different treatments at once because you said you were honestly asking how others do that. I can't speak for the OP, but I tried to give my input on that to help.

And now I'm confused, you say you're fine and feeling good, but when I asked if you had any other concurrent conditions besides the vulvar issue (which you feel is resolved), you answered that you have TMJ, vaginismus (though I think we all have some of that from the VV), you may have fibro (that's a really bad disorder, I have it), and you mentioned endo and IC. So you said you have a lot of other conditions. I'm just confused now. I was basing my answer on that. I wanted to know if fixing VVS was the end of your problems and you said it wasn't. ?

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 8:51 pm

jen007 wrote:Just out of curiosity, what doctors have you seen? I've been with doctor Andrew Goldstien since this past summer. He's pretty great, to me anyway. If you haven't seen him and live near by I highly recommend him!

-Jen

In the order I saw them?

Dr. Hope Haefner, in Michigan (specialty vulvar clinic)
Dr. John Willems, in California [Scripps Medical Institute] (80% clientele vulvar patients)
Dr. Joseph Brooks, in Arizona (specialty vulvar clinic)
Dr. Libby Edwards, dermatological vulvar specialist (sees other dermatological conditions as well, but with strong emphasis on vulvar diseases)

My gyn here at home (which is Hawaii, which means thousands of miles each way) says I've seen the "best of the best" and has heard of all these names.

Dr. Willems has very high ratings, spent 4 hours with me the first visit (between a couple of other patients), and was extremely kind. He just seemed excellent and knowledgeable. Then on my next visit (4 years later -- and I couldn't tolerate the topical estrogen or antihistimines he prescribed, but couldn't travel back to see him again soon), I was doing a lot better and we were talking about how pH affects the vagina. I was just asking theoretically how he feels about it, and getting discharges which I USED to get but knock on wood, were much better in the last 4 months. So during my exam, without even asking, I thought he was only taking a sample for a routine culture, since that's what he said he'd do -- suddenly it felt like someone had lit my entire vagina on fire. I started screaming, and crying, and my whole body was shaking, as I asked him what he'd done. He said he just put some diluted vinegar in my vag, to "adjust the pH and send you hope with a good vagina", looked at me amazed and thunderstruck. I had just told him before the exam that I was better and wasn't having the discharges at the time, and he didn't even TEST my pH, which I'm sure was totally normal at the time!!! And even though he said my vulva looked much improved from the first time before this crazy move, now he backpeddled and told me my vulvar skin was so red and thin, I would never heal without estrogen. So suddenly he changed his tune to protect his ass, seeing as how he'd totally violated me by not even telling me he was going to put this caustic stuff in me (which I don't even know was vinegar, it felt like some horrible chemical, maybe a mixup of bottles?), which he said, if I'm having this kind of reaction to, I'd react to water as well. Which is just bullshit. He then slapped on anesthetics, which I also react to (lidocaine allergy.) I went from like a 1 or 2 level problem and imagining sex again to a 10+++++++ and still have not recovered, over 3 years later.

Dr. Haefner is considered a pioneer in this field. Gave me a prescription to take compounded topical antibiotics and cortisone for a type of vaginitis (DIV), and I told her the bases of the meds usually cause me more burning. She then told me I was being difficult and obstructive. I couldn't wait to talk to the sex therapist who is part of the clinic, since I had never talked with a professional about the beating my self-esteem has taken from all this, and the first thing she did was lecture me about how I was not listening to Dr. Haefner's advice, and that I "had become my illness."

Dr. Brooks told me I might have lichen planus and wouldn't know without a biopsy, but noted huge numbers of vaginal inflammatory cells, so prescribed cortisone. I told him I'd tried cortisone already and it burned me. He told me to keep taking it. (Btw, he is a follower of Dr. Goldstein, and said he has done "100's" of vestibulectomies, himself. No complaints, all his patients have all been happy. Really? 100% success rate? I trust that. lol)

Dr. Edwards, took one look at me and said I definitely don't have lichen planus and don't need a biopsy to rule it out. Excellent doctor, very thorough, very compassionate, knew her stuff. She told me after the full exam that "we are in the dark ages of understanding what this disorder is about." Only 20 years ago, they didn't even have a name for it or believe it existed [yup, I was around and a very young woman for that!], so the research is in its infant stages. She gave me the list of the usual meds for pain, pelvic floor therapy recommendation, yada yada. But she was very humble and said, "This is all we know to give at this point in time, along the course of the pace of medicine."

I would definitely not write off Dr. Goldstein, so thank you for the recommendation. As you can see, I've criss-crossed the country for this -- which my family has borne as an expense, as I'm too disabled to afford it. I don't doubt he's a good doctor, and good at what he does. I'm just not sure he could tell me something I haven't heard, and if he does, it's likely that I need an operation, and that I wouldn't do for the reasons I've talked about here. I don't think it would cure all that ails me. I envy the successes (and I consider a true success one that stands the test of time, as in YEARS), but I'm not going to get a permanent change to my body when this whole diagnosis and the etiology is so mysterious, and I have more than just one piece of skin that's bothering me (though it used to be more like that, and it's gotten to be more complicated.)

Thank you again for the recommendation!

I don't know if others have had any successes with these docs, but those are my experiences...


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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 9:10 pm

Jen --

What has Dr. Goldstein done for you? (not to hijack the thread...)

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 9:14 pm

Alana3 wrote:Or Dr Trabin! Lifesaver

Thanks for the recommendation!

If you can share what he did for you, I'd appreciate it.

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Re: Antibiotics vs probiotics..

Post  Alana3 on Sat Mar 30, 2013 9:20 pm

Vestibulectomy he's awesome he looks at everything

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 9:24 pm

Oh, I thought it was Dr. Goldstein who did your vestibulectomy.

So Dr. Trabin diagnosed you with only VVS?

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Re: Antibiotics vs probiotics..

Post  Alana3 on Sat Mar 30, 2013 10:03 pm

I didn't go to Goldstein yeah he did that's all I had

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Re: Antibiotics vs probiotics..

Post  Alana3 on Sat Mar 30, 2013 10:05 pm

Oh and vaginismus and strep ew

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 10:18 pm

How did he treat the strep, and did he think that was just a one-time problem? Or did you see him enough that he saw it more than once?

Did you have vaginal infections treated, prior?

Is that all gone/have you had any recurrences of that (or any other infection, since the surgery)?

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Re: Antibiotics vs probiotics..

Post  Alana3 on Sat Mar 30, 2013 10:39 pm

Strep is gone it was checked I just did a round of hardcore antibiotics. The only other problem I had was a yeast infection after a round of antis for a ear infection. I saw him several times before I decided to do surgery. I had bv, ureaplasma and uti but the first 2 were from the doctor (not ths same one) not sterilizing his equipment properly the whole office closed gross!

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Re: Antibiotics vs probiotics..

Post  Darkhorse on Sat Mar 30, 2013 10:43 pm

Alana3 wrote:Strep is gone it was checked I just did a round of hardcore antibiotics. The only other problem I had was a yeast infection after a round of antis for a ear infection. I saw him several times before I decided to do surgery. I had bv, ureaplasma and uti but the first 2 were from the doctor (not ths same one) not sterilizing his equipment properly the whole office closed gross!

YIKES!!!

So Dr. Trabin gave you oral antibiotics for the step, not a vaginal suppository cream?

Thanks for answering all the questions, lol.

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Re: Antibiotics vs probiotics..

Post  Alana3 on Sat Mar 30, 2013 10:45 pm

Yes oral antis it hasn't come back but that doesn't mean it won't... But so far it's not there thank the lord it was a long dose and he have me a cream too I just remembered that it was fine tho do u have strep

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