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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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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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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

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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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Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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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skin splitting...yeast? hormones? whyyy???

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skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Mon Dec 09, 2013 4:23 pm

hello all. I am new to this board but sadly, not new to vulvodynia. I have primary vestibulitis that I have been dealing with for about 10 years now.

I am distressed because it seems like lately my skin is in worse shape than it's ever been. I have a feeling this may stem from a topical clindamycin (antibiotic) cream that my doc had me try back in april. I knew it was probably a bad idea and might cause a yeast problem but I was so desperate after trying so many different treatments that I was willing to give anything a shot. after a week of using it, I developed what I'm fairly positive was a yeast infection--my whole vulva just became irritated, itchy, and SENSITIVE beyond belief--but when I went back to my doc she tested me and said it wasn't yeast. I used some home remedies (yogurt, apple cider vinegar, coconut oil) and the symptoms subsided, but it feels like they haven't completely gone away, even all these months later. I get these flare-ups where I'm just extremely itchy and the skin feels weak, dry, and like it's being stretched at times.

another concern is that this seems to be affecting my anal skin more and more. the skin there also feels very weak and sore/tight, and now pretty much whenever I have a BM there is some blood when I wipe. before this whole ordeal with the clinda, I NEVER had this problem. maybe an occasional little spot of blood when I wiped but nothing like this. it's every time now, and the skin just feels constantly painful and tender.

right now I am using coconut oil and hoping it will clear it up, but if it's still like this when I have a follow-up in january, I'm probably going to request a diflucan rx. I'm so afraid of making it worse at this point but I don't know what else to do.

but anyway, other than the yeast problem, I've been feeling like maybe this is all hormone related, but it seems like no doc wants to hear that and I don't understand why. maybe because I'm still young? I don't get it. I started seeing a new doc recently because I felt I needed a fresh perspective but, of course, I was disappointed again. I have a recurring split at the 6 o'clock spot on my vulva, and she's said more than once that I may "just have to live with it" because a lot of splits like that just reopen every time you have sex. but it seems messed up to me that she doesn't want to make the effort to figure out what's causing my skin to be so fragile and split in the first place. doesn't that sound like it points to low estrogen or something along those lines? I did try premarin cream before and it seemed to help a bit, but maybe it just wasn't intense enough if my estrogen is really low, which I told my doc and she basically ignored. I can't with these doctors anymore.

also, when I started seeing her, I mentioned that a previous doc suggested I might have lichen sclerosus. I have vitiligo, which I know often coincides with LS, so I feel it's definitely a possibility. so the new doc put me on clobetasol for about two months...it seemed to help a little but wasn't a cure by far, and I ended up tapering off it. last time I saw her I brought it up again and asked if she thought lichen sclerosus be the cause of my skin being so weak. and she said "oh, the clobetasol would have treated it if that was the cause." is that really true though? from everything I've read you generally need to do a hormone cream or something to build the tissue back up if it is lichen sclerosus, not just try a steroid for a few weeks and expect everything to be completely better. I'm starting to think this doc is just an ass, which is depressing, because she's one of the most highly recommended docs for vulvar issues in my state! so depressing.

so anyway, what I'm doing between now and my next appointment is basically using coconut oil, neogyn, and I also went off my birth control pill to see if that helps at all. I don't think BC is the cause for me because I had vestibulitis since before I ever took it, but I figured why not try it? not really having sex right now anyway because it's so painful. and maybe I can request another hormone test when I go back and it will give me a more accurate result. I've had them tested before and the doc said my levels were normal, but I'm wondering if that's due to the BC distorting the results. maybe being off it will help provide more clarity.

sorry, I know this was a bit long and disjointed. any input is greatly appreciated!!! this is such a horrible problem to have to deal with and I sincerely wish you all the best in overcoming it. I really wouldn't wish this on anyone.

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Re: skin splitting...yeast? hormones? whyyy???

Post  Leslieg on Mon Dec 09, 2013 5:08 pm

Maybe ask your dioctor for a biopsy? Do you have other symptoms of LS? (ie. skin discoloration). There is a great yahoo group for LS.  Lots of ladies to offer advice. Have you changed toilet paper? Detergents? Soap?
I hope your flare calms soon.... Stay positive and keep looking for a doctor you're comfortable with.

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Mon Dec 09, 2013 5:47 pm

Leslieg wrote:Maybe ask your dioctor for a biopsy? Do you have other symptoms of LS? (ie. skin discoloration). There is a great yahoo group for LS.  Lots of ladies to offer advice. Have you changed toilet paper? Detergents? Soap?
I hope your flare calms soon.... Stay positive and keep looking for a doctor you're comfortable with.

thanks for your reply! I have loss of pigment in spots around my vulva from the vitiligo. but my doc said I don't have any of the white scaley patches that are indicative of LS, so she said I probably don't have it. that sounds fishy to me too, though, because from what I've read it doesn't ALWAYS present as scaley white patches. I know a biopsy is the only way to know for sure, but my docs have always held off because they don't want to cause another trauma that won't heal properly...and personally I definitely don't want that either, on top of everything else I'm dealing with! but maybe I will just have to do it if that's the only way to get a proper diagnosis. I'm just so afraid at this point of doing things that cause the problem to get worse and still don't give me any answers or hope...

I have been using gentle/hypoallergenic soaps and detergent for a couple of years now and always do an extra rinse on my laundry, etc. it has helped reduce my itchiness and irritation overall but it didn't solve the problem. I am still using regular toilet paper, though.

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Mon Dec 09, 2013 6:12 pm

I recently had this happen too. My doctor told me and my boyfriend to have a lot of foreplay and use plenty of lube. Than it was discovered I have a cervical infection so they're treating that and yeast so that could dry things out. But my doctor also said that there was a surgery they could do to make it stop tearing. Also, there are over the counter products called AZO (I'm sure you've heard of them) that help prevent yeast infections (which reminds me I have to take mine today lol oops). Maybe pick a box up and see if that doesn't help. I also take a garlic supplement, which helps with yeast prevention.

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Re: skin splitting...yeast? hormones? whyyy???

Post  Leslieg on Mon Dec 09, 2013 6:41 pm

Maybe check out the Lichen Sclerosis yahoo group. At one time I thought I had lichen planus so I was on those forums all the time.  That group has pictures, articles and treatment advice.  I learned that the typical LS rash is kind of hour glass shape involving the vulva and anus and there may be some loss of anatomy or shrinking down there.  But everyone has their own experience.  I don't blame you for not wanting a biopsy.  I had one about 5 years ago.  I tolerated it well with little pain ( they numb you topically) but I was OK after as well.  However at the time my skin was only mildly flared.  Chronic inflammation was all they found. I realize some women have trouble and pain with it.
I read a lot of women's stories where it took months for the clobetasol to start to work.  

I've learned that I have a skin allergy, but I haven't found products that work yet. I'm thinking I'm sensitive to sodium lauryn sulfate which is in everything. I've also learned that skin allergies can take months to heal and only a small amount of allergen exosure can set you back.  I use lidocaine daily.  My skin splits at 6 o'clock with intercourse as well. I'm slowly changing everything.  All products to organic and natural but i have to order online and then test them.  It's a process. :)I hope you feel better soon!  I'm typing on my phone so I apologize if this message is disorganized!

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Post  aspaceodyssey on Tue Dec 10, 2013 2:57 pm

Leslieg wrote:Maybe check out the Lichen Sclerosis yahoo group. At one time I thought I had lichen planus so I was on those forums all the time.  That group has pictures, articles and treatment advice.  I learned that the typical LS rash is kind of hour glass shape involving the vulva and anus and there may be some loss of anatomy or shrinking down there.  But everyone has their own experience.  I don't blame you for not wanting a biopsy.  I had one about 5 years ago.  I tolerated it well with little pain ( they numb you topically) but I was OK after as well.  However at the time my skin was only mildly flared.  Chronic inflammation was all they found. I realize some women have trouble and pain with it.
I read a lot of women's stories where it took months for the clobetasol to start to work.

thank you for the tips! the hourglass description sounds a bit like what I'm experiencing. I joined the yahoo group and it seems like there's a lot of great info there. that's interesting to hear about the clobetasol...I was afraid if I used it for too long it would weaken my already fragile skin.

does anyone have any tips for what to do about my bum region? it's freaking me out seeing blood every time I go to the bathroom now  Crying or Very sad if it is a fissure or something, I don't want it to get worse. I've tried using all different oils (coconut, vitamin e, evening primrose, emu, sea buckthorn) on it as well as vaseline, neogyn...nothing seems to be really helping. it all soothes it for a while but doesn't seem to be having any lasting improvement.

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Tue Dec 10, 2013 4:14 pm

I have that but it happens with endometriosis, are you sure its skin and not something going on internally?

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Tue Dec 10, 2013 4:25 pm

Alana3 wrote:I have that but it happens with endometriosis, are you sure its skin and not something going on internally?

I'm not positive of course but at this point I've been tested for every STD and infection under the sun and the tests always come back fine, according to the docs. I've had an ultrasound before too, though I know that wouldn't tell me conclusively if it's endometriosis or not, but for what it's worth that was also normal. I'm leaning towards a skin problem because I don't have any deep pain or anything like that, all of the issues I'm having affect only the very opening of my vagina and my vulvar skin, and it's only fairly recently (over the past 6 months or so) that I started getting the splitting around the anal skin.

I mean I definitely think there's some kind of underlying cause that hasn't been determined, possibly lichen sclerosus or a hormone imbalance. it doesn't seem to me that normal, healthy skin would just be breaking down and splitting for no reason? my new doc keeps harping on my pelvic muscles and insisting it's tension causing the skin not to be healthy and to split but I don't buy that either. I did 6 months of weekly physical therapy and biofeedback and, while I thought it was worthwhile to try and I still try to keep up with the exercises, it still didn't solve the problem!

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Tue Dec 10, 2013 4:59 pm

yeah I don't know but if your skin is dry I know it can split easily. But as for what's causing me I don't know. Have you had your hormones checked recently?

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Tue Dec 10, 2013 5:30 pm

a while ago, and the test came back normal but I seriously question that result. I was on hormonal birth control at the time (and have been for years) and have a feeling it might have been masking my actual levels. I'm going to bring it up again when I see my doc next month. I've gone off the HBC now so maybe I will get a more accurate result. I feel like there's a decent chance it's a hormone related thing. my vulvar skin just feels weak, dry, and not elastic at all, and using oils/ointment/lube only gives temporary relief.

anyone have any experience using topical testosterone and/or estrogen?

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Tue Dec 10, 2013 5:46 pm

I do didnt work

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Wed Dec 11, 2013 2:54 pm

I'm sorry to hear that they didn't work for you...may I ask how long you used them for? and did you use both testosterone and estrogen at the same time?

so in the meantime I'm just using antibiotic ointment and a plain zinc oxide cream on my bum until I have a chance to talk to my doc about that. I figure those two things are gentle enough that they probably won't aggravate anything. I think I'm also going to give the garlic supplement a try. thanks for the tips!

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Wed Dec 11, 2013 3:23 pm

It didn't but I'm "cured" from vulovydnia. It just didn't do anything for me nothing bad nothing good it just didn't work. I would ask your doc before putting anything on anywhere unless they were previously prescribed, I'd hate for it to get worse.

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Wed Dec 11, 2013 3:56 pm

what ended up being the cure for you? sadly I do not particularly trust most doctors to know what's best for this anymore...I'm keeping up hope that the right one is out there for me and I just haven't found her yet but what I've experienced up until now has been pretty discouraging.

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Wed Dec 11, 2013 4:03 pm

I had a vestibulectomy last year! I totally hear you and completely understand. where are you from maybe I can help if youre from the states?? There is def one that can help you- it took me about 8 doctors to find someone who could help me. So DO NOT give up you can find someone who can help. Have you visited any specialists? Sometimes run of the mill gyno's aren't the answer and it helps to spend a little more moolah to get answers. I literally traveled all over my state to figure out what to do. Awful, but I got my own answers. Don't be afraid to voice your opinion and to stand up for yourself- if theyre good doctors they wont care if you question. Be your own advocate- if something doesn't seem right well it probably isn't.

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Wed Dec 11, 2013 4:33 pm

aww thanks! I live in RI. after seeing a string of regular gynos who didn't know crap, I ended up going to a specialist at women and infants for a year as well as a physical therapist. I can't say they weren't good doctors, I could tell they really tried their best, but they got to the point where I could tell they didn't really know what else to do to fix the problem and they started just throwing anything they could think of at me, hence my clindamycin ordeal. then I went to a new doc for another opinion, one who allegedly specializes in pelvic pain problems, but I have not been impressed with her at all. I hate to say it but I think maybe the quality of docs around here is just generally not the greatest. my next move is to try and start seeing someone in boston. I have a few names I got when I signed up for the NVA as well as from my last doc, but if you know of anyone good in that general area feel free to mention them!

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Re: skin splitting...yeast? hormones? whyyy???

Post  Alana3 on Wed Dec 11, 2013 6:08 pm

Dr Andrew Goldstein is apparently an awesome doc- I was actually gonna go up and have an appointment with him until I found my doc in Florida. Dr. Trabin and I LOVE him. But Dr. Goldstein is located in D.C. or Boston?? and New York (I think). Yeah, I had a shitty "specialist" too- awful!! I love Rhode Island, where are you from there?

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Post  aspaceodyssey on Wed Dec 11, 2013 8:41 pm

cool! I'm from providence  Cool rhody pride!!!

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Post  Alana3 on Wed Dec 11, 2013 8:42 pm

loved it there! I went there with a friend of mine who lives in Manchester. We drove down and spent the night Smile

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Re: skin splitting...yeast? hormones? whyyy???

Post  Leslieg on Thu Dec 12, 2013 1:05 am

Hello!  I live in NH.  My specialist is in Burlington, MA.  With no traffic, maybe an hour from Providence.  (I used to get my hair done in providence

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Re: skin splitting...yeast? hormones? whyyy???

Post  Leslieg on Thu Dec 12, 2013 1:14 am

Weird......90% of my previous post didn't go through.  My specialist is the vulvovaginal clinic at Harvard vanguard medical associates in Burlington , MA.  Dr Elizabeth Stewart (gyn) and Dr Lynette Margesson (derm) consults there as well as nurse practioners.  They are helping and I'm slowly getting better. I'm told they're renound in the field. Dr Sewart wrote The V Book.  Let me know if you need the #. It takes a while to get in there , so if you're interested, call soon to get the process started.  Nice to hear from a new Englander Smile

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Re: skin splitting...yeast? hormones? whyyy???

Post  aspaceodyssey on Thu Dec 12, 2013 3:28 pm

thank you so much for the tips!! elizabeth stewart is the one who my last doc recommended to me so I think I will definitely work on getting an appointment in that clinic. have you actually been seen by her personally or do you pretty much just work with the nurse practitioners? just curious. that's interesting to know they work with a derm too. that could prove helpful for me if it does turn out that LS is what I'm dealing with. thanks again!

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Re: skin splitting...yeast? hormones? whyyy???

Post  Leslieg on Thu Dec 12, 2013 5:24 pm

I initially saw the nurse practioners and did for a couple of years.  My two most recent appointments have been with both Dr Stewart and Dr margesson at the same time (she's in Burlington once a month but her main office is in NH).  They have me see her in Burlington ...? I guess because it would take lots of paperwork to change to NH at this point.  I don't mind going to MA. It's less than an hour for me and I used to live there.  I think they assess case by case to see which dr you'll need.  I was happy to get to see dr margesson...I was having new symptoms and one of the other docs that works there prompted the referral.  I was always told that I could schedule an appointment with dr Stewart by request and every now and again the doc or NP I was seeing pulled her in the room to look at me.  From what I know they're the best in this area.  My guess is they'll initially schedule you with a NP and take it from there.  Good Luck!!

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clotrimazole

Post  aspaceodyssey on Thu Jan 02, 2014 8:32 pm

well, I feel like I have proof that what I've been dealing with ever since using the clindamycin is, in fact, yeast. how do I know? on family vacation over the weekend I grabbed my brother's jock itch ointment (clotrimazole) in a moment of desperation and used it just on my vulva...relief! more relief than I've felt after months of trying yogurt, acidophilus, apple cider vinegar, coconut oil, and every other natural remedy, I'm sad to report...

so at this point I'm thinking of just picking up an actual clotrimazole yeast kit. kind of ridiculous that I waited so long but I did so because I'm always afraid of using things that will make it worse and I (stupidly) believed my doc when she said it wasn't yeast even though all of my symptoms suggested otherwise. now that I have pretty conclusive proof it is yeast I feel like I might as well do what I can to get some relief. and if it doesn't work I may still ask about diflucan at my next appointment. does this sound like a safe plan? I know overusing these products can make vestibulitis worse but I don't really overuse them, this would be the first time in years, so I feel like it should be ok...

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Re: skin splitting...yeast? hormones? whyyy???

Post  Leslieg on Thu Jan 02, 2014 10:18 pm

I don't think it would hurt to try the OTC chlotrimazole. Especially if you haven't been treated for yeast in years. I've been tempted at times to use the jock itch stuff in the past Smile
Heads up that monistat always seemed to make me feel worse and my docs want it off the market ?!?. I was actually thinking of trying a yeast treatment as well to experiment. Just keep in mind, I was told these creams also have anti-inflammatory properties as well which may be providing the relief.

I just read of a woman who had V for 5 years and did ending up having a baby and went to a naturopathic doctor who treated her baby and her for thrush ( she had new onset of yeast rash on her body too. After a few months of the NP's treatment, ALL of her V symptoms went away and stayed away. She always tested negative for yeast until after her baby was born and the antibiotics she was given during birth gave her a yeast infection that showed up with testing. Over the years, she had even tried weekly doses of diflucan (despite negative swabs) that didn't help completely only some. unfortunately, she didn't write what the remedy the Naturopath used nor did she give the name of the NP doctor. But this does support that there are yeast issues out there that are not identifiable with the normal swabbing. I haven't tested positive for yeast since this all began. I frequently wonder if this is the missing link for many of us. But its hard to convince the doctors we see only every 3 months to buy into this.
The good NPs cost $$$  Neutral  

Try it and see what happens. I wish you well!

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