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Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 4

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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 …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5


Hello. In Need of Advice, Please and Thank You. Long Read.

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Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Fri Jun 10, 2016 1:22 am

Hello and thank you for clicking on this to read about my issues.  My name is Lindsey, and up until about two years ago, everything was fine with my vulva and vaginal area, with the exception that I had had very heavy and painful and irregular periods in the past, which was one of the reasons my gynecologist put me on birth control to begin with… but that was 5+ years ago.  I’m not even sure how to start this.  Hm.  Back in August of 2013, my husband and I moved to England until December of 2014, when we returned home to Georgia (he is in the Air Force).  Up until October of 2013, I had been on the birth control Sprintec for a couple of years with no issues.  Sprintec is a form of birth control that is provided by Wal-Mart; it’s inexpensive, and it had never caused me any issues.  However, Sprintec was not provided in England (no Wal-Mart there, ha), so I asked my PCM there to switch me over to Ortho Tri-Cyclen Lo because I had been on that one before with no issues as well (I only swapped for cost-effective reasons).  I was placed on Ortho Tri-Cyclen Lo and had absolutely no issues, up until April of 2014.  I had a kidney stone, my fourth one, and was very familiar with that awful pain.  I went to the emergency room on base because I had no pain medication (I hadn’t had a kidney stone for a couple of years) and was given pain medication and anti-nausea medication, because pain medication makes me sick.

I was told to follow up with my PCM in a week or two, which I did.  At the time I did not feel as if I had passed the stone, just that it had moved somewhere and become stuck.  I had also begun to feel slightly itchy and have a bit of a painful sensation in my vaginal area a couple of days before the appointment I had already scheduled.  I had a thick, white discharge, and was certain it was yeast.  I figured I may as well bring that up at my appointment as well, and get something for it.  I had had a couple of yeast infections before and had always been sensitive to Monistat, so I was going to ask for Diflucan.  My PCM wanted a urine sample, and informed me that it looked like my kidney stone had caused a UTI.  He also swabbed my vaginal discharge, told me that it did indeed look like yeast, and called in Diflucan for the yeast and Septra for the UTI.  He also told me to use Monistat as well to give me extra protection against the antibiotic.  I did these things, and two weeks later, attempted intercourse with my husband.  It BURNED.  Went back to my PCM, found out my UTI was cleared up, and he told me that I might possibly have “a little vaginosis”.  I was then prescribed Flagyl and more Diflucan.  I took all of the medication as prescribed.  I then asked to make another appointment because I was still having the same issues—burning and pain upon penetration, and a white discharge that was very thick at times, and what I knew was completely abnormal for me.  
My PCM then referred me to another, female, doctor, and she only did a vaginal exam, told me that I definitely had yeast, and gave me more Diflucan, and Diflucan for my husband too.  Well, this didn’t work either.  Then it was back to the doctor, who tested me for ALL kinds of things, including STDs, and everything came back negative.  I was told to try various different things, from probiotics to oatmeal baths to yogurt and/or coconut oil inserted vaginally at night.  I was already taking showers, not baths. I was already wearing looser-fitting clothing, and all of that good stuff.  I tried all of the things suggested; I even went some steps further and tried RepHresh vaginal gel.  Nothing worked, although the coconut oil and yogurt did give me a slight bit of relief… almost a cooling/soothing effect.  But nothing helped the pain.  Nothing helped the burning.  Nothing helped the discharge.  Not even triamcinolone.

I went to yet another doctor, the gynecologist on base, and she suggested switching birth controls.  She put me on Microgestin Fe, a monocyclic birth control.  She told me to give it a few months to see if it would help.  She said after that we may need to try a betadine “wash” to “reset” everything in my vagina.  

Well, we had to come back to Georgia before I got the chance to see this gynecologist again, and then it was moving, settling back in, getting a job, working, etc.  I finally phoned my gynecologist and asked if I could be switched back to Sprintec and she said she would give me a few months’ supply but she would need to see me after that since she hadn’t seen me in almost two years at that point.  The Microgestin Fe was making me have terrible mood swings and was making me break out and hadn’t helped the discharge or pain at all.  My gynecologist called in Sprintec for me and scheduled an appointment with her in July (it was April of 2015 at this point, I believe).  I got put back on the Sprintec, which helped with the mood swings and breakouts, but NOTHING else.  Somewhere along the way, I got my medical records back from the base in England and guess what?  Every single swab that I had had done in England had tested negative for everything, including the first one, which both my PCM and myself were convinced at that point in time that I had a yeast infection.  I had been negative for everything the whole time, and the only thing my swabs had ever shown were white blood cells, which is indicative of inflammation.  The best description I can give is that the pain is a burning pain, and when any kind of vaginal penetration is attempted, it feels like I am on fire; it is a horrible pain.  Sometimes I feel this pain when I’m urinating (I have been tested for UTIs multiple times, all negative), sometimes when just sitting down, ALWAYS with any sort of penetration.  I feel it even more now not just at the entrance or my labia, but also my clitoris, so that any kind of sexual contact is painful or uncomfortable for me.  On top of this, I continue to have this awful discharge which is thinner on some days, thicker on others, and it seems to have become even worse over the past six or so months.  It sticks to my labia like glue and dries, and then comes off in “little balls”.  I use hypoallergenic products, which hasn’t helped.  

Ugh, I’m getting off-track.  I’m sorry.  So, I went to my gynecologist in July of 2015 for my pap smear and to have her hopefully help me with whatever this issue is.  Told her about all these issues; she did a swab and went ahead and treated me for yeast.  Swab wound up coming back negative, and she said my discharge made her think a little of BV.  I wanted to kindly but firmly inform her that I’d been treated for that in England as well with no luck, but figured what the heck.  She gave me a prescription for vaginal Clindamycin.  I took as directed, and it didn’t help.  She then prescribed me another vaginal yeast medication, Clotrimazole.  I took as directed, and it didn’t help.  Then it was on to Metronidazole, which I’d already had by mouth back in England but my gynecologist here suggested it might do better vaginally.  Nevermind that I had tested negative for yeast and bacterial vaginosis.  

I finally REALLY started doing some research on my own.  My mom suggested to look into “burning vulva syndrome”, and I did.  Seems to be a correlation between low-dose estrogen pills and burning/discharge.  I can understand why that may have been a problem while I was taking Ortho Tri-Cyclen Lo but not with Sprintec, as it is not a “low dose” estrogen pill, right?  
I then stumbled upon something called “cytolitic vaginosis”, and I went back to my gynecologist yet again.  This was in March of this year.  She looked at my discharge; however, she did not want to see the pictures of it that I had taken on my phone and brought with me so she could see what was going on while I wasn’t there in the office.  She said “this is sufficient”, and then there was the searing pain of the speculum being inserted and her swabbing me with a Q-tip.  “Looks like yeast,” she informed me.  “Pretty sure it’s yeast.”  To which I replied, “I’m pretty sure it isn’t.”  I mentioned the cytolitic vaginosis to her.  She had no idea what that was, and after looking it up, told me that she was going to call in medication for me for a yeast infection and if it wasn’t yeast, not to take it.  She said to try baking soda douches nightly along with pre-seed lubricant inserted vaginally every night for up to a month.  The most recent yeast medication (Diflucan tablets and Nystatin cream) are still in my cabinet, unused, because GUESS WHAT?  I was negative for yeast for the billionth time.  I did try the baking soda douches and pre-seed every night for nearly a month with NO improvement.  I then did more research and stumbled upon “The Centers for Vulvovaginal Disorders” website, and read about Desquamative Inflammatory Vaginitis.  It sounded a whole lot like what I have going on—discharge that “is copious and sticky and dries on the vulva like it is glue”.  Ding, ding, ding?  Maybe?  I printed off this information that I had found, faxed it to my gynecologist, and awaited a reply.  She got back to me relatively quickly, contacted the CVVD herself, and asked how she should prescribe the medication that the CVVD recommended.  I am now, and have been, for about a month, taking a compound vaginal cream of clindamycin, estrogen, and hydrocortisone every other night.  Unfortunately, I have not seen ANY improvement in my symptoms.  

I’m wondering where I should go from here.  I still have the burning, the discharge.  Nothing has changed.  It’s still incredibly painful to have any penetration; it’s even uncomfortable to try to masturbate.  And also ever since this began, I’ve had an almost-tingling, burning, “heavy” feeling in the bottom of my feet.  I notice it the most when I lay down at night and in the morning when I get up. I used to wake up in the mornings wondering if I was getting any better and then I would feel that sensation in my feet and know that I wasn’t.  I am taking probiotics every day; I am considering trying RepHresh again and/or Balance Activ.  I was advised to soak a cotton ball in 5% lidocaine and put that at the vaginal entrance on the nights I wasn’t doing the compound cream for DIV.  I tried that a couple of nights ago, and it was all fine and dandy; it helped with the burning.  But I woke up in the morning feeling unusually sore in my labia area and even the area surrounding my labia, almost like I’d had an incredible amount of pressure there for some time, but for goodness’ sake, it was only a cotton ball!!!
I am getting so fed up with feeling this way, with being unable to be intimate without it hurting, with not WANTING to be intimate because I know it is going to hurt.  Lubricants do not help, so far (I’m sensitive to lubricants anyway), and condoms do not help so far.  I “put up” with the pain because my husband “needs” the release, but I get nothing out of it except pain.  I don’t get aroused.  Penetration never “did it” for me anyway; always oral, but even THAT now is practically out of the question.  Even if I’m not worried about it hurting, the discharge makes me feel gross and anything but sexy, and I don’t want anyone’s mouth or fingers in that general vicinity.  

Can any of you kind, knowledgeable individuals offer any advice? I’m beyond frustrated and don’t know what to try next.  I will have to go to my gynecologist again soon for another pap smear; is there anything I should ask her to be looking for in particular?  Should I have her do another swab test to check for something else (I have been tested for BV, yeast, all kinds of STDS, and I have been told I do not have lichen sclerosus or lichen planus either)?  Should I continue the lidocaine?  Should I continue to medication for DIV?  Should I switch birth controls?  Should I try coconut oil again?  I hate this discharge most of all.  The pain is terrible, but I’ll take it over this terrible discharge that stains my underwear and gets all over me and dries and creates a mess.  I’m at a point where I’m wondering if the discharge is causing the burning, or if the burning is causing the discharge.  I just don’t know.  But I would like to have some answers.  I have included some pictures of said discharge.  Does anyone have a clue what could be going on with me?  Has anyone had any of these symptoms?  Has anyone received answers and are better?  

I thank you all so much for your time, and I’m so sorry I rambled on and on; I just wanted you all to have the full story, and I figured it was important to include as much information as I could.  Thank you again; you have no idea how much I appreciate it.  










lindsey_taylor

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  sailor_moon on Fri Jun 10, 2016 6:27 am

Hey there! Welcome the forum.

I have a few questions for you?
Have you only had this discharge since going on birth control?
Is it there pain and discharge 24/7 or only at certain times?
Have you had your hormones checked once a week for a whole cycle to see what your hormones are actually doing?


You said you suffer from irregular and painful periods. I'm wondering if your hormones are out of whack and have been made worse from birth control. Also, some forms of yeast infections only show up at certain times. I had a deep rooted yeast infection that took 2 1/2 years to show up!! Every test came back negative, only that my current doctor caught it on a day my symptoms were really severe! Even though I took Fluconazole/Diflucan at one point for 6 weeks straight, it didn't fix it because my hormones were absolutely ridiculously messed up. Yeast/BV and hormones go hand in hand. Add endometriosis and non- insulin related PCOS to the mix and it's a recipe for disaster.

To top my problem off I have a suspected trapped pudental nerve. ...which is the main cause of my discomfort and pain. Currently trying to get that sorted out.

The best advice I can offer you atm is if you are still on birth control, get off it! And get your hormones checked over a monthly cycle to see what's going on. See if a doctor will allow you to do swabs yourself to hand in to pathology on days your symptoms are at their most severe. Keep a diary of your symptoms and see if their is a pattern with your symptoms where you are at in your cycle. Also your PH could be out too...I'm in Australia and I used a product called acijel which was very helpful at restoring my PH as it felt my discharge was burning my skin! Also research for specific vulva specialists around your area. They might have a better insight to what's going on.

I don't know if my advice will be of any use to you but I hope it can be! This condition sucks... but I believe that there is hope for all of us, it has taken 2 1/2 years to get some real answers, and a year and a half to sort my hormone problems. It's a long road but please don't give up. There are many wonderful ladies on this site who offer great support and advice.xx
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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  emalita on Fri Jun 10, 2016 1:57 pm

I absolutely agree with sailor_moon! You really should get off hormonal birth control and keep a pain diary.

Birth control seems to be a big trigger for women, but the unfortunate thing is that just because you stop it doesn't mean things will bounce right back to normal. Birth control really messes with our hormones, which are the core of good vaginal health. If you do choose to go off of birth control, I would recommend looking into seed cycling to help rebalance your hormones. I know, I know...how the heck do seeds help with hormones...well, they do, and it is a drug free option to try for a few months. Below is a good link about it:

http://www.dr-kristy.com/balancing-hormones-with-seed-clycling/

Pain diaries can offer such amazing insight. Make sure to document how you're feeling even on your good days so that you have something to reference on days leading up to a horrible flare. I also keep a detailed food journal so I can see if there is a pattern with food and pain.

Also, I would recommend monitoring your pH. I use a product that I order from amazon.co.uk called EcoCare Comfort Vaginal pH-Test Cotton Swabs just because I'm too lazy to use a regular pH strip. This will help you know if your issue is pH related or not instead of throwing in more RepHresh, which has a ton of icky stuff in it. I've been down the path of trying to treat supposed BV with daily use of RepHresh like it is recommended in the UK, and it helped for a few days but then stopped working.

I personally have inflammatory vaginitis (IV), not DIV, but when I was reading your post, DIV was the first thing I thought of. My discharge was never sticky and didn't dry like glue to my skin, but your first and last pictures are definitely familiar to me. And, like you, my discharge causes the burning and raw irritation on my vulva. I started off a lot like you. I had a confirmed UTI that didn't SEEM to go away; so I was prescribed 3 different antibiotics in one month. Then my OBGYN thought I had BV, and along came another antibiotic. Then I had a yeast infection and was prescribed a cream. I was left just aching, raw, prickling, and burning. Finally a naturopathic physician recommended I use boric acid to get rid of whatever infection was going on, which worked for the infection, but it left me with severe inflammation, which is where I'm at now.

I can't recommend enough that you find a specialist who knows more about vulvovaginal disorders. Some OBGYNs have good intentions but end up causing the issue or making it worse, which was what happened in my case. Or they try to tell you it must be nerve pain or unresolved sexual issues, and that's when all sorts of antidepressants or anticonvulsants are shoved at you. Regular doctors do not like to hear that discharge is causing burning unless you have yeast or BV. Don't get me wrong, nerve issues and sexual trauma are very real issues, but they aren't everyone's issue. I see a specialist in Arizona who actually has a test to determine the health of your flora, and I flew out there from Wisconsin because I was sick of doctors guessing. I can't say his treatments are anything special or miraculous for me so far anyway, but if nothing else, I get tests every 4 months to show me how my flora is doing. That to me is worth sticking with him because there is no guessing whether I'm improving the underlying issue or not.

I hope you find relief soon!

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  fairlight10 on Fri Jun 10, 2016 8:26 pm

I have been looking back at the very early posts on this forum and found something interesting posted May 4th 2010. Red and burning vulvar? Could be chronic atrophied erythomatous candidiasis or intracellular candidiasis. It can be treated with long term systemic antifungal drugs. This is residual inner cellular infection left after a vaginal candidiasis condition also known as a red form of candidiasis.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  fairlight10 on Fri Jun 10, 2016 8:59 pm

Google Dr Marjorie Crandall yeast infections, candida allergy and vulvodynia. Hope this helps someone.

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Re: Hello. In Need of Advice, Please and Thank You. Long Read.

Post  lindsey_taylor on Sat Jun 11, 2016 1:47 pm

sailor_moon wrote:Hey there! Welcome the forum.  

I have a few questions for you?
Have you only had this discharge since going on birth control?
Is it there pain and discharge 24/7 or only at certain times?    
Have you had your hormones checked once a week for a whole cycle to see what your hormones are actually doing?


You said you suffer from irregular and painful periods. I'm wondering if your hormones are out of whack and have been made worse from  birth control.  Also, some forms of yeast infections only show up at certain times. I had a deep rooted yeast infection that took 2 1/2 years to show up!! Every test came back negative, only that my current doctor caught it on a day my symptoms were really severe! Even though I took Fluconazole/Diflucan at one point for 6 weeks straight,  it didn't fix it because my hormones were absolutely ridiculously messed up. Yeast/BV and hormones go hand in hand. Add endometriosis and non- insulin  related PCOS to the mix and it's a recipe for disaster.

To top my problem off I have a suspected trapped pudental nerve. ...which is the main cause of my discomfort and pain. Currently trying to get that sorted out.

The best advice I can offer you atm is if you are still on birth control,  get off it! And get your hormones checked over a monthly cycle to see what's going on. See if a doctor will allow you to do swabs yourself to hand in to pathology on days your symptoms are at their most severe. Keep a diary of your symptoms and see if their is a pattern with your symptoms where you are at in your cycle.  Also your PH could be out too...I'm in Australia and I used a product called acijel which was very helpful at restoring my PH as it felt my discharge was burning my skin!  Also research for specific vulva specialists around your area. They might have a better insight to what's going on.

I don't know if my advice will be of any use to you but I hope it can be! This condition sucks... but I believe that there is hope for all of us, it has taken 2 1/2 years to get some real answers,  and a year and a half to sort my hormone problems.  It's a long road but please don't give up. There are many wonderful ladies on this site who offer great support and advice.xx

Thank you sailor_moon for your reply! I have had this discharge since April of 2014. I had what I was certain was a yeast infection, and my PCM was certain it was yeast and did a swab for it, but it came up negative for yeast and only showed "white blood cells". I did not know this until SEVERAL months later, that this first test for yeast wasn't even yeast at all. I went on birth control around 2010 and had NEVER had any issues with the Ortho Tri-Cyclen Lo OR Sprintec. They made my periods lighter and regular and not painful. That is why my gynecologist wanted me on them in the first place, because of how heavily I bled during periods. She actually wanted me to go on one that made it so periods would only happen once every 3 months, but that was the first birth control I tried and I bled for 40-ish days straight. But that was several years ago, and as I said, I had had no issues at all with the other birth controls I have been on.

I have this discharge all the time, except when I am on my period. The pain is always there, INCLUDING when I am on my period. It is sometimes unprovoked, but ALWAYS there when I urinate, wipe, touch, or attempt any penetration in any way. I often wear liners because the discharge stains my panties, and sometimes even the liners "move the wrong way" and cause pain.

Last night, I used the compound cream of estrogen, clindamycin, and hydrocortisone that my gynecologist prescribed for me only after I did research on DIV and sent her the information. I have been using this cream for over a month now without any relief. For instance, I just went to the restroom to urinate ten or so minutes ago, and ten minutes later I'm still having a burning sensation in my vulva area. Not only that, but the bottoms of my feet feel very "heavy" and are tingling. I notice this latter symptom the most at night when I go to bed and in the morning.

No, I have not had blood draws regularly to see what my hormone levels are doing. In fact, I have never had my estrogen level checked, as far as I know. I will definitely bring this up with my gynecologist when I go back, probably next month after I'm done with this round of cream. Thank you so much.

Yes, I had painful, irregular, and heavy periods before birth control. My gynecologist never investigated the why, just wanted to "fix" it with the birth control, and it did seem that that worked for my periods. If the issue is birth control, I have no idea why it would start years after I'd already been on it. Sad My gynecologist also seemed reluctant to even switch me to another birth control, but I will ask her if I should come off of it altogether. I will also ask about hormone monitoring and whether this could be a deep-rooted yeast like you have. Shortly after all of this started I was on Diflucan for several weeks as well with no improvement. So I definitely understand where you are coming from. I'm so sorry that you have suffered with this pain and burning. It's awful. I'm very glad that you are getting help! Please keep us updated! And again thank you for your advice and taking time to reply.

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Post  lindsey_taylor on Sat Jun 11, 2016 2:14 pm

emalita wrote:I absolutely agree with sailor_moon! You really should get off hormonal birth control and keep a pain diary.

Birth control seems to be a big trigger for women, but the unfortunate thing is that just because you stop it doesn't mean things will bounce right back to normal. Birth control really messes with our hormones, which are the core of good vaginal health. If you do choose to go off of birth control, I would recommend looking into seed cycling to help rebalance your hormones. I know, I know...how the heck do seeds help with hormones...well, they do, and it is a drug free option to try for a few months. Below is a good link about it:


Pain diaries can offer such amazing insight. Make sure to document how you're feeling even on your good days so that you have something to reference on days leading up to a horrible flare. I also keep a detailed food journal so I can see if there is a pattern with food and pain.

Also, I would recommend monitoring your pH. I use a product that I order from amazon.co.uk called EcoCare Comfort Vaginal pH-Test Cotton Swabs just because I'm too lazy to use a regular pH strip. This will help you know if your issue is pH related or not instead of throwing in more RepHresh, which has a ton of icky stuff in it. I've been down the path of trying to treat supposed BV with daily use of RepHresh like it is recommended in the UK, and it helped for a few days but then stopped working.

I personally have inflammatory vaginitis (IV), not DIV, but when I was reading your post, DIV was the first thing I thought of. My discharge was never sticky and didn't dry like glue to my skin, but your first and last pictures are definitely familiar to me. And, like you, my discharge causes the burning and raw irritation on my vulva. I started off a lot like you. I had a confirmed UTI that didn't SEEM to go away; so I was prescribed 3 different antibiotics in one month. Then my OBGYN thought I had BV, and along came another antibiotic. Then I had a yeast infection and was prescribed a cream. I was left just aching, raw, prickling, and burning. Finally a naturopathic physician recommended I use boric acid to get rid of whatever infection was going on, which worked for the infection, but it left me with severe inflammation, which is where I'm at now.

I can't recommend enough that you find a specialist who knows more about vulvovaginal disorders. Some OBGYNs have good intentions but end up causing the issue or making it worse, which was what happened in my case. Or they try to tell you it must be nerve pain or unresolved sexual issues, and that's when all sorts of antidepressants or anticonvulsants are shoved at you. Regular doctors do not like to hear that discharge is causing burning unless you have yeast or BV. Don't get me wrong, nerve issues and sexual trauma are very real issues, but they aren't everyone's issue. I see a specialist in Arizona who actually has a test to determine the health of your flora, and I flew out there from Wisconsin because I was sick of doctors guessing. I can't say his treatments are anything special or miraculous for me so far anyway, but if nothing else, I get tests every 4 months to show me how my flora is doing. That to me is worth sticking with him because there is no guessing whether I'm improving the underlying issue or not.

I hope you find relief soon!

Hello and thank you emalita for reading my long, convoluted story and for taking the time to reply.  I've been on birth control for years without issues until 2014 and I guess I'm scared to stop it due to the convenience of it?  It helps my periods and of course helps prevent pregnancy, not that the latter really matters because my spouse and I don't have sex very often at all because it is extremely painful for me.  My gynecologist seemed reluctant to even switch birth controls when I asked the last time I was in the office but I will definitely ask her about stopping it, or I guess I could just stop it myself, haha.  

The pain diary is a good idea, although I think mine would be fairly redundant.  My pain is occasionally unprovoked, but is ALWAYS noticeable when "provoked", ie, when my vulva area is touched, when I urinate and wipe, when there is any attempt at penetration, etc.  For instance, I used that compound cream of hydrocortisone, estrogen, and clindamycin that my gynecologist put me on after I sent her the info about DIV (I have been using it every other night for a little over a month with no improvement) last night, went to the restroom and urinated and wiped about 15-20 minutes ago now, and the burning is still very noticeable, still strong.  Not only that, but the bottoms of my feet are tingling and they feel "heavy", and I seem to notice this most at night and sometimes in the morning; I have come to correlate it with the vulva burning and pain, since I never had this before 2014.

I have never heard of seed cycling but have bookmarked the site; it's so strange and neat how they have recognized that seeds can help with things like this.  Have you been doing this seed cycling thing?

Oh my goodness, I'm so sorry for the issues you have been having, and that it was made worse by some of the things that were done to try to make it better.  May I ask, before you started the boric acid, did you have a confirmed infection still?  As in, did they swab and the swab grew out yeast?  Because every single thing that I have been tested for has been negative and I tried the boric acid suppositories for a while with no relief.  Your story makes me wonder if I should try them again and stick with them but simultaneously do things to help possibly decrease the irritation and inflammation they can cause and help restore my flora.  It seems you are on the right track.  I don't think I have even left the station, as it were.  I just mostly wish this discharge would STOP.  I don't know if this is what is causing the burning, or the discharge is a reaction to the pain/inflammation/burning. But either way, I have been suffering with it for two years, and nothing at all has helped.  Sad

I also check my pH regularly with little swabs, but it all comes back looking normal. 

Please keep us updated with your story!  I certainly hope that you will be completely "cured" and that you will be pain-free and  inflammation-free and irregular discharge-free.  I thank you so much for taking time to respond.  Every little bit helps, and just to know that I am not alone means so much.  Thank you.

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Post  lindsey_taylor on Sat Jun 11, 2016 2:19 pm

fairlight10 wrote:I have been looking back at the very early posts on this forum and found something interesting posted May 4th 2010. Red and burning vulvar? Could be chronic atrophied erythomatous candidiasis or intracellular candidiasis. It can be treated with long term systemic antifungal drugs. This is residual inner cellular infection left after a vaginal candidiasis condition also known as a red form of candidiasis.

Hello fairlight10 and thank you for your reply. I did google what you suggested and read about it; however, are there any ladies on here that have had any success with this treatment? And how is it specifically tested for? Thank you so much.

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Post  emalita on Sat Jun 11, 2016 2:55 pm

My cycles have always been super regular; so seed cycling wasn't necessary for me. However, two Naturopaths that I worked with recommended it when I was concerned that my issues were hormone related. Plus, I've read blogs from women who said it changed their lives. It's just seeds; so it would be worth a try if you go off birth control Smile

I only had a confirmed UTI (through dip test, not culture), and when I was diagnosed with BV, it was only based on the appearance of "clue cells" through wet mount. The less than knowledgeable OBGYN didn't do a pH test or whiff test, which are extremely important in the diagnosis of BV. I had used one of those OTC pH tests the night prior, and it was normal! I even told the OBGYN this, but she didn't seem to care. After being treated for BV, I did have a confirmed yeast infection, and when I went back again after the yeast treatment because the pain hadn't stopped, they saw only "clue cells" again. However, at that point even my OBGYN said she wasn't convinced it was true clue cells because identifying them is subjective (wonderful lack of faith in her own lab techs). So I refused the antibiotics she pushed at me even though she doubted it was BV, and I've never been back to her. I didn't have any other confirmed infections, but I knew in my gut something was wrong. Boric acid got rid of whatever infection was going on, but I truly believe it encouraged the horrible inflammation I have now. In March, my number of WBCs per single KOVA cell were measured at between 51-75 (I believe I was at 60). The results should have been 0-2  Crying or Very sad

Your situation sounds so much like where I was about 9 months ago. If your pH is normal, maybe you don't have DIV because having a high pH is very common for DIV, and unfortunately the antibiotic you have in your compounded cream could be making things worse. My pH seems to have always been normal even though my lactobacillus count is low (separated by 5-6 segment lengths).

The best advice I can give, and I know this is hard, but don't be too willing to throw anything and everything at this issue. I know I caused my pain to be as bad as it is because I was willing to put anything I could get my hands on into my vagina. I was so desperate for relief that I lost sight of what was really good for my lady bits. The best thing I ever did was stopping all treatments for two months to give myself a "baseline" of how just my vagina was doing. Then I sought treatment from a doctor who actually tested my flora health instead of guessing what was going on, and only then was I willing to start another treatment plan. So just be kind to yourself throughout your search for treatment, and remember that vaginal health is extremely sensitive.

Please keep us updated on how you're doing sunny

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Post  lindsey_taylor on Sun Jun 12, 2016 5:16 pm

emalita wrote:My cycles have always been super regular; so seed cycling wasn't necessary for me. However, two Naturopaths that I worked with recommended it when I was concerned that my issues were hormone related. Plus, I've read blogs from women who said it changed their lives. It's just seeds; so it would be worth a try if you go off birth control Smile

I only had a confirmed UTI (through dip test, not culture), and when I was diagnosed with BV, it was only based on the appearance of "clue cells" through wet mount. The less than knowledgeable OBGYN didn't do a pH test or whiff test, which are extremely important in the diagnosis of BV. I had used one of those OTC pH tests the night prior, and it was normal! I even told the OBGYN this, but she didn't seem to care. After being treated for BV, I did have a confirmed yeast infection, and when I went back again after the yeast treatment because the pain hadn't stopped, they saw only "clue cells" again. However, at that point even my OBGYN said she wasn't convinced it was true clue cells because identifying them is subjective (wonderful lack of faith in her own lab techs). So I refused the antibiotics she pushed at me even though she doubted it was BV, and I've never been back to her. I didn't have any other confirmed infections, but I knew in my gut something was wrong. Boric acid got rid of whatever infection was going on, but I truly believe it encouraged the horrible inflammation I have now. In March, my number of WBCs per single KOVA cell were measured at between 51-75 (I believe I was at 60). The results should have been 0-2  Crying or Very sad

Your situation sounds so much like where I was about 9 months ago. If your pH is normal, maybe you don't have DIV because having a high pH is very common for DIV, and unfortunately the antibiotic you have in your compounded cream could be making things worse. My pH seems to have always been normal even though my lactobacillus count is low (separated by 5-6 segment lengths).

The best advice I can give, and I know this is hard, but don't be too willing to throw anything and everything at this issue. I know I caused my pain to be as bad as it is because I was willing to put anything I could get my hands on into my vagina. I was so desperate for relief that I lost sight of what was really good for my lady bits. The best thing I ever did was stopping all treatments for two months to give myself a "baseline" of how just my vagina was doing. Then I sought treatment from a doctor who actually tested my flora health instead of guessing what was going on, and only then was I willing to start another treatment plan. So just be kind to yourself throughout your search for treatment, and remember that vaginal health is extremely sensitive.

Please keep us updated on how you're doing sunny

Oh wow, thank you for sharing this! And you are so right; it is so hard to NOT want to just throw everything at my lady parts to try to make them feel "normal" again. I hate feeling not at all like myself, and I hate that ladies that have these problems are often made to feel as if their issues aren't "legitimate", just as I do, because whatever is going on is something that hasn't been figured out yet, I suppose. If it isn't yeast and it isn't an STD and it isn't BV then it must not be a problem! Ugh. I was seriously hoping that my issue was the DIV, but my pH has not been basic, and the compound cream does not seem to be helping me at all. I think when I visit my gynecologist again I will ask if I can have my estrogen levels tested, if coming off birth control might help, and I want to see what my pH is "on paper" and "exact", and I want to see what my lactobacillus count is. I don't know if any of these things will give me answers or just send me to more dead ends, but it's worth looking into I suppose. Thank you for all of your support and your kind words of encouragement!

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Post  emalita on Sun Jun 12, 2016 7:10 pm

Even if you don't have DIV, you could have inflammatory vaginitis (IV). My doctor says this diagnosis is missed due to the outdated testing methods still used today (i.e. wet preps). Below are some links that talk about his reseach, including his website. I do want to warn you that his website is bizarre and reads like a sales gimmick versus a medical practice (and has tons of grammar mistakes), but try to look past that  Wink Even if you have absolutely no intention of flying out to see him, which is absolutely fine, his website provides some good information that may help you.

www.ncbi.nlm.nih.gov/pubmed/?term=Fowler+inflammatory+vaginitis
www.fowlergyninternational.com/diagnostics
journals.lww.com/jlgtd/Citation/2014/01000/Comment_for__Anything_Wrong_With_Conventional_Wet.24.aspx  (scroll down to the preview, which actually shows the whole letter so nothing has to be purchased Smile )

I know how hard this condition is and how absolutely soul crushing it can be, but I do want to tell you that I'm at a far better place than I was even 3 months ago. I'm not healed or cured, and I still have some awful days. But it CAN get better.

Hang in there and don't give up hope!

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Post  lindsey_taylor on Wed Jun 22, 2016 1:58 am

emalita wrote:Even if you don't have DIV, you could have inflammatory vaginitis (IV). My doctor says this diagnosis is missed due to the outdated testing methods still used today (i.e. wet preps). Below are some links that talk about his reseach, including his website. I do want to warn you that his website is bizarre and reads like a sales gimmick versus a medical practice (and has tons of grammar mistakes), but try to look past that  Wink Even if you have absolutely no intention of flying out to see him, which is absolutely fine, his website provides some good information that may help you.

www.ncbi.nlm.nih.gov/pubmed/?term=Fowler+inflammatory+vaginitis
www.fowlergyninternational.com/diagnostics
journals.lww.com/jlgtd/Citation/2014/01000/Comment_for__Anything_Wrong_With_Conventional_Wet.24.aspx  (scroll down to the preview, which actually shows the whole letter so nothing has to be purchased Smile )

I know how hard this condition is and how absolutely soul crushing it can be, but I do want to tell you that I'm at a far better place than I was even 3 months ago. I'm not healed or cured, and I still have some awful days. But it CAN get better.

Hang in there and don't give up hope!

I am so sorry it took me a while to reply. My job (I am a Hospice Nurse) has kept me insanely and frustratingly busy lately. Thank you for the information! The articles do seem a bit sketchy due to the lack of "proofreading" but they do make sense. Thank you for sharing. I tried looking up inflammatory vaginitis but only find results for DIV.

I am so glad that your situation has improved. It gives me hope that mine can as well. I'm actually just about to post an update below this response. Smile

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Update

Post  lindsey_taylor on Wed Jun 22, 2016 2:07 am

So I have finished the compound clindamycin/estrogen/hydrocortisone cream that the doctor had prescribed me.  I still feel a burning sensation after I wipe past using the restroom.  I still feel a burning sensation with pressure to the vulva area.  I have not attempted intercourse.  I still have the burning/tingling/heavy sensation in my feet which is more noticeable when I lay down for bed and when I first get up in the morning.  It still feels like my labia/clitoral area is "too sensitive" and I feel burning sensations there as well with stimulation/pressure.  Since I finished the compound cream I have began taking a feminine probiotic supplement which includes cranberry, and as of last night, started using vaginal prebiotic suppositories to hopefully boost and maintain the good vaginal flora, or help restore it, whatever needs to be done.  The vaginal suppositories melt into a clear liquid, which I have had to wear a bigger liner for.  I have also noticed a change in my discharge--it actually looks yeasty to me now, but what the heck do I know anymore?  It's definitely different from previously.





(The second image is what the discharge looks like after I have "squished" it a bit.)

Any thoughts, anyone?

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Post  emalita on Wed Jun 22, 2016 2:48 am

Well, if I've learned anything from all this mess it's that not everything shows textbook symptoms for everyone. So, even though I would agree that your new discharge looks like yeast, I would definitely recommend going in to be tested before self treating with any OTC product. However, since you've started another vaginal product, a test for yeast won't be very accurate for a while.

Just please be careful with what you choose to use vaginally. I hear so much of my situation in your story, and using product after product vaginally only made things worse for me in the long run. Plus, most vaginal products you can find in stores actually have some yucky ingredients even though they say they are "healthy" for the vagina.

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Post  lindsey_taylor on Wed Jun 22, 2016 8:07 pm

emalita wrote:Well, if I've learned anything from all this mess it's that not everything shows textbook symptoms for everyone. So, even though I would agree that your new discharge looks like yeast, I would definitely recommend going in to be tested before self treating with any OTC product. However, since you've started another vaginal product, a test for yeast won't be very accurate for a while.

Just please be careful with what you choose to use vaginally. I hear so much of my situation in your story, and using product after product vaginally only made things worse for me in the long run. Plus, most vaginal products you can find in stores actually have some yucky ingredients even though they say they are "healthy" for the vagina.

Thank you so much. I did speak with my gynecologist today and she has prescribed Diflucan for me. She is also the one who recommended the prebiotic vaginal suppositories and told me to take them after I was done with the compound cream she prescribed. The suppositories she recommended were these:

Vaginal suppositories

When I sent her the picture of my discharge and told her my continued symptoms she said to try Diflucan and not to get any otc treatment. She said if the Diflucan does not help to call her back. I have no idea what will or will not help me at this point but I am so scared that nothing is going to work. There is a very real possibility that all these things meant to help me have caused harm.

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Post  emalita on Thu Jun 23, 2016 1:29 am

I wish I could reassure you that everything you've tried so far has only helped, but speaking from experience, my doctors and I made my condition what it was at its worst. However, there is light at the end of the tunnel! I promise Very Happy It has taken me about 10 months since it was at its worst to get to a place now where I think the end is in sight.

Something I forgot to ask was did this new discharge just start after you began using the prebiotic suppository? I know products like RepHresh and Replens cause a cottage cheese like discharge that can last for several days, and I thought when I had researched the one you're using (I had considered it at one point) it was known to cause the same type of fallout. So that may be where this new discharge is coming from.

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Post  lindsey_taylor on Thu Jun 23, 2016 1:52 pm

emalita wrote:I wish I could reassure you that everything you've tried so far has only helped, but speaking from experience, my doctors and I made my condition what it was at its worst. However, there is light at the end of the tunnel! I promise Very Happy  It has taken me about 10 months since it was at its worst to get to a place now where I think the end is in sight.

Something I forgot to ask was did this new discharge just start after you began using the prebiotic suppository? I know products like RepHresh and Replens cause a cottage cheese like discharge that can last for several days, and I thought when I had researched the one you're using (I had considered it at one point) it was known to cause the same type of fallout. So that may be where this new discharge is coming from.

What do you think helped you, really? I know you were on estrogen tablets and an antifungal and hydrocortisone suppository, but didn't the suppositories irritate you more? The compound cream I was on had hydrocortisone and estrogen in it, but also an antibiotic, clindamycin, and not an antifungal. I took the Diflucan yesterday and am using nystatin cream on my vulva per order of the doctor. I woke up this morning with the same tingling/heaviness in my feet (I don't know if nerves are being crossed here or if this is referred pain or what) and my vulva is still sensitive to touch, and there is still the burning with urination. It feels almost as if I'm being "pinched" down there sometimes when my clothes "touch the wrong way", I guess. Not that I expected any improvement several hours after doing something different, but anyway. My doctor did say to continue the prebiotic suppositories to try to help "feed" the good bacteria and such. Honestly, I did notice some of the clumpy-like discharge when I was still on the compound cream but I didn't pay much attention to it because I thought maybe the cream did that somehow? The cream also increased the burning sensation on my labia and clitoral area quite a lot when it would leak out. I only wanted to try that compound cream because I'd read about DIV and my symptoms sounded so terribly similar that I had an "AH-HA!" moment, but I honestly don't know if it did any good, or did more harm. It's so frustrating.

I'm so sorry I'm rambling. Again, yes, I did notice some of the clumpy discharge while I was still on the compound antibiotic/steroid/hormone cream. When I was getting close to finishing the cream, I had spoken with my doctor and she suggested the prebiotic suppositories right after, and I went from seeing "creamy clumps" to just... uhhh... clumpy clumps, I guess. Laughing

I have a feeling the Diflucan and Nystatin won't do any good, because I've been through this in the past, when all of this first started. Weeks of Diflucan and no help at all. I'm trying to think positively but it is so hard! pale

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Post  emalita on Thu Jun 23, 2016 4:32 pm

Since you've had so much stuff up in there, I would suggest not paying too much attention to your discharge at the moment. There is no way to tell what is your true discharge and what is being caused by all the products. Plus, for me, I found that scrutinizing my discharge was pointless because by the time I was doing that I had no clue what my "normal" discharge looked like and how it differed throughout my cycle. I'm sure if a "healthy" woman would examine her discharge as closely and as often as we have, she would find something off about it in her mind too Wink

My vulvar skin used to be so sore and tender to the touch after all the boric acid, antifungals, and antibiotics I had used. The majority of the tenderness is gone now even though I'm still a bit sensitive, but things didn't start improving until several months after I stopped all treatments.

I wish I could tell you one thing made a huge difference for me, but it has all been trial and error. I will ramble off a few thoughts I have on what has made a difference:

- Boric acid was a miracle worker to get rid of whatever burning internal infection I had, but I would caution the use of boric acid if you are already so horribly irritated. It could just make things worse if your issue isn't a true infection.

- I don't know if any of the suppositories my current specialist had me on made a difference. The antifungal and hydrocortisone suppositories definitely caused some irritation, but my vulvar skin was so sensitive that even plain water irritated it. I can say that I do feel some improvement after his treatments, but that could have just been plain old time that made the difference. I just sent my flora test back into him earlier this week. So once I receive the results back I can post if my flora has improved.

- I am taking a probiotic that is proven to help colonize the vagina (Fem-Dophilus). Not sure if this has worked, but I will know more once I get my test results back.

- I finally think I have my skin at a place of healing by applying YES waterbased lubricant several times a day. I won't know if it has helped my inner labia/vestibule pain until after my next period since it flares the worst during that time. However, I can say that YES has made going to the bathroom less horrible.

- I know this isn't what you want to hear, but stopping EVERYTHING was the best thing I ever did. Giving my vagina several MONTHS of nothing but it's own healing powers made a huge difference. It is difficult for our bodies to regulate themselves when we keep interfering with its ability to heal.

Don't worry about rambling Smile I used to have a friend from this forum that would write pages and pages of her thoughts and worries to me daily, and it was so great to know I had someone who was there that I could chat openly with...I should add that as an item that really helped Wink Knowing I wasn't alone was very therapeutic.

I know how horrible this is and how desperately you must want the pain to go away. Just make sure to be kind to your body, and remember that your body wants to heal as badly as you want it to. Keep us updated on how things go for you sunny

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Post  WaahwaahUK on Thu Jun 23, 2016 6:36 pm

Emalitia - you make a very valid point here that I would like to echo. I truly believe my pain got worse with all the different steroid ointments and creams prescribed to me! Several months of not using anything at all has made my overall health down there feel better. I had problems with discharge for a time, but it wasn't an infection (after the infection I had originally had cleared). I think my body was trying to readjust itself. Just a thought and throwing my one in the mix!

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Post  emalita on Thu Jun 23, 2016 7:03 pm

WaahwaahUK - I couldn't agree more. We're all looking for that magic pill or cream to make everything better, but more times than not those things just keep the irritation going. I'm definitely not saying I won't ever use anything internal again (I've been off the the estrogen tablet now for about a week), but I am extremely cautious about what I'm willing to use. I was actually really fighting the idea of using the YES lubricant for weeks, but I'm sure glad I used it again Very Happy

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Post  emalita on Thu Jun 23, 2016 8:02 pm

lindsey_taylor - I just got my flora test results back, and I haven't improved as much as I had hoped. However, there was some improvement, and I've posted everything under "my story" post.

Apparently the Fem-Dophilus probiotics did NOTHING for me. So, I scratch that from my earlier list Rolling Eyes

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Post  lindsey_taylor on Sat Jul 02, 2016 1:09 am

emalita wrote:Since you've had so much stuff up in there, I would suggest not paying too much attention to your discharge at the moment. There is no way to tell what is your true discharge and what is being caused by all the products. Plus, for me, I found that scrutinizing my discharge was pointless because by the time I was doing that I had no clue what my "normal" discharge looked like and how it differed throughout my cycle. I'm sure if a "healthy" woman would examine her discharge as closely and as often as we have, she would find something off about it in her mind too Wink

My vulvar skin used to be so sore and tender to the touch after all the boric acid, antifungals, and antibiotics I had used. The majority of the tenderness is gone now even though I'm still a bit sensitive, but things didn't start improving until several months after I stopped all treatments.

I wish I could tell you one thing made a huge difference for me, but it has all been trial and error. I will ramble off a few thoughts I have on what has made a difference:

- Boric acid was a miracle worker to get rid of whatever burning internal infection I had, but I would caution the use of boric acid if you are already so horribly irritated. It could just make things worse if your issue isn't a true infection.

- I don't know if any of the suppositories my current specialist had me on made a difference. The antifungal and hydrocortisone suppositories definitely caused some irritation, but my vulvar skin was so sensitive that even plain water irritated it. I can say that I do feel some improvement after his treatments, but that could have just been plain old time that made the difference. I just sent my flora test back into him earlier this week. So once I receive the results back I can post if my flora has improved.

- I am taking a probiotic that is proven to help colonize the vagina (Fem-Dophilus). Not sure if this has worked, but I will know more once I get my test results back.

- I finally think I have my skin at a place of healing by applying YES waterbased lubricant several times a day. I won't know if it has helped my inner labia/vestibule pain until after my next period since it flares the worst during that time. However, I can say that YES has made going to the bathroom less horrible.

- I know this isn't what you want to hear, but stopping EVERYTHING was the best thing I ever did. Giving my vagina several MONTHS of nothing but it's own healing powers made a huge difference. It is difficult for our bodies to regulate themselves when we keep interfering with its ability to heal.

Don't worry about rambling Smile I used to have a friend from this forum that would write pages and pages of her thoughts and worries to me daily, and it was so great to know I had someone who was there that I could chat openly with...I should add that as an item that really helped Wink Knowing I wasn't alone was very therapeutic.

I know how horrible this is and how desperately you must want the pain to go away. Just make sure to be kind to your body, and remember that your body wants to heal as badly as you want it to. Keep us updated on how things go for you sunny

I'm so sorry for the delay in responding! I work 5+ days a week as a Hospice Nurse and was on call twice earlier this week and I am on call tonight and the entire day tomorrow... add the on call time and the regular working hours (I was called out at 0120 Tuesday morning, got back at 0430, and got up at 0630 to go to work my regular hours). I'm exhausted and running on empty and I'm sure all of this stress doesn't help my downstairs situation. I don't really know if the stress of my job plays into it at all, but eh. Again, I'm so sorry. I promise I didn't fall off the face of the earth! Smile

Thank you so much for telling me about the things that have helped you. I have actually purchased the YES water based lubricant and am waiting on it to arrive. I hope it can help relieve some of my discomfort at any rate. I will say that I have taken the two Diflucan tablets as prescribed by my gynecologist and I did the Nystatin on my vulva/labia for all of one night because it made the area RED RED RED and even more irritated so I stopped that. I started my period on Sunday of this week, and that was when I took the second Diflucan. I have not seen any more yeasty-looking discharge, though I guess I won't really be able to tell much until my period is over for this month. I go back to my gynecologist's office July 22nd and I plan to ask her if I should stop my birth control. I plan to ask what the specific pH of my discharge is, and my lactobacillus count. I know that what this is can't be cytolitic vaginosis as the baking soda douches nor suppositories nor pre-seed never helped me, and I still have the burning whether I'm on my period or not. I continue to have it even now, as I'm sitting here typing.

I am so glad that stopping everything has helped for you! I am so worried though that I have some underlying SOMETHING going on that hasn't been caught yet, that I am almost scared to NOT be trying to do something, if that makes sense. I will say that for a few months, I think November 2014-July 2015, I had stopped doing any kind of vaginal "treatment". The only thing I did during those months? Continue taking my birth control (I was on Ortho Tri Cyclen Lo and then Microgestin FE at the time, and I was swapped because one of the doctors figured maybe the switch to a monocyclic birth control would help with the discharge--it didn't). I never got any better, and then I started doing all kinds of things again to try to fix myself, under the supervision of my gynecologist.

I'm not sure of what else I should ask her during my next appointment, but hopefully that will give me some sort of direction. Sad

lindsey_taylor

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Post  lindsey_taylor on Sat Jul 02, 2016 1:10 am

WaahwaahUK wrote:Emalitia - you make a very valid point here that I would like to echo. I truly believe my pain got worse with all the different steroid ointments and creams prescribed to me! Several months of not using anything at all has made my overall health down there feel better. I had problems with discharge for a time, but it wasn't an infection (after the infection I had originally had cleared). I think my body was trying to readjust itself. Just a thought and throwing my one in the mix!

Thank you WaahwaahUK! It really is so hard though, to try to deal with the idea that you don't know if the issue is that you have to heal, or if you have something wrong that hasn't been detected yet. Sad

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Post  lindsey_taylor on Sat Jul 02, 2016 1:16 am

emalita wrote:lindsey_taylor - I just got my flora test results back, and I haven't improved as much as I had hoped. However, there was some improvement, and I've posted everything under "my story" post.

Apparently the Fem-Dophilus probiotics did NOTHING for me. So, I scratch that from my earlier list Rolling Eyes

Interesting story about Fem-Dophilus (my experience with it): When my spouse (then-boyfriend) and I first started having intercourse after I started birth control, one side of my vagina would at times have this "pinching" sensation. And then, I think I adjusted to the birth control, and everything seemed fine. Until his ejaculate started to burn me, inside. It wasn't terribly painful, more annoying than anything else. But I could lay there for hours with that sensation, and it was like my vaginal area would throb with the beat of my pulse, and i could just FEEL the burning sensation. ONLY after he would ejaculate inside of me. I started taking Fem-Dophilus shortly after we got married, and after three months or so, I never had that burning sensation after he would ejaculate inside of me ever again. So of course when I started having this issue in 2014 and the rounds upon rounds of antibiotics and Diflucan and vaginal creams I was being given were not working, I went back to these probiotics. They didn't help. Sad I'm now taking VH Essentials Probiotics with Prebiotics and Cranberry. And oh, I stopped using that Prebiotic vaginal suppository. Don't know if this stuff will help me either. I'm so sorry you haven't improved as you were hoping. Sad I will definitely get caught up on your story!

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Post  emalita on Sat Jul 02, 2016 3:05 am

lindsey_taylor wrote:I am so glad that stopping everything has helped for you!  I am so worried though that I have some underlying SOMETHING going on that hasn't been caught yet, that I am almost scared to NOT be trying to do something, if that makes sense.

I know exactly what you mean. This is exactly where I was at for a LONG TIME up until January 2016 when a vulvar specialist finally strongly urged me to stop inserting anything into my vagina. I was extremely resistant, but it was only then after about 2 months that significant improvements were made. I was so convinced that I had an incurable case of BV or yeast, and that just wasn't the case.

So just make sure you are doing what's best for you, and make sure to take a few breaths before starting a new treatment Smile

As far as asking your doctor if you should stop your birth control, just know that most doctors will probably tell you it has nothing to do with your pain. However, I've read that many of the top vulvar specialists in the U.S. recommend discontinuing hormonal birth control due to the vulvodynia connection. Below is some info from an article discussing this. I would recommend you do your own research and not rely completely on the knowledge of your doctor (nothing against your doctor, but just throwing my two cents out there based on experience).

"Thanks to the groundbreaking work of Dr. Andrew Goldstein, who sees hundreds of women a year at his Center for Vulvo-Vaginal Disorders, it is now appreciated that a small but significant percentage of women on hormonal contraception not only have reduced libido but also experience painful intercourse...Since both estrogen and testosterone receptors in the vagina contribute to lubrication, it is understandable that low testosterone not only makes things drier, but also more painful, a condition known as hormonally mediated vestibulodynia."

http://blog.doctoroz.com/oz-experts/when-taking-the-pill-takes-away-your-sex-life

These are all just my thoughts and opinions, and you have to do what's best for you, of course. I truly hope you can find some relief and healing soon.

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