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» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

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

Comments: 3

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 …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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 …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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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Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

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Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Tue Mar 29, 2016 1:56 pm

This horrible issue started about 2 years ago after I started having a reaction to Cottonelle flushable wipes. I had been using them for years to "freshen up" down there, and at the time I didn't think I had any issues with them. However, after finally connecting the allergic reactions/yeast infections (not sure which it truly was) to these darn wipes after several months, not only did the rash/infections stop, but so did the fissures I had been suffering with for so many years. I've read so many horrible things about them and their ingredients it makes me sick what companies are willing to put in their products to save a buck. 

Unfortunately just stopping the wipes wasn't enough since by that point I had been given all sorts of pills (antibiotics, antifungals), and I was self treating with whatever I thought would help, which I'm sure just destroyed any good flora I had left. Every month like clockwork I would get this horrible poking pain that took weeks to go away. Then I got a UTI (my fault), and that is where my life was turned upside down. I was given 3 different antibiotics in one month to treat the UTI since I was still having symptoms (looking back, I know the UTI was gone after the second round of pills). Then finally I went to an OBGYN because the pain had turned into this horrible constant prickling sensation. She improperly diagnosed me with BV (no pH or whiff test, just "clue cells") and along came another antibiotic (all in the same month). I have never been the same since. The monthly poking pain as well as the prickling pain was finally cured by boric acid suppositories, but the pain on my vulva (feels like acid being poured on my inner labia) has never gone away. Also, due to being told by my Naturopath to keep the boric acid off my vestibule, I had started overwashing multiple times a day, which left my labia raw and on fire (clearly that is not what she meant). I had thought the acid burning pain was due to boric acid, which is why I was so obsessed with washing my skin.

About 10 doctors (PCPs, PAs, OBGYNs, Naturopaths, counselors, etc.) and thousands of dollars later I chose to fly across the country to AZ to see Dr. Fowler at Fowler Gyn International because I refuse to believe this is just something I have to deal with for the rest of my life. Incorrect diagnoses and treatments got me into this mess, something has to be able to turn this around. I agree with another poster who said his website is a bit quirky, but I was only able to find a small handful of negative reviews about him amongst the hundreds I found (from his website and outside his website). He also provides the contact info for a handful of previous patients that you can talk to, which I did. All three that I reached out to basically said he saved their lives. PLUS, he offered a test that aided his diagnosis! He wasn't just another doctor who would look at me and say, "you look fine to me". So I figured I had nothing to lose.

He diagnosed me with a mild case of lichen sclerosus (no whitening or scarring, just sticky and shiny skin) and a really bad case of inflammatory vaginitis. I've read that I wouldn't have caused the lichen sclerosus, but I don't believe that for a second. It didn't start until after my overwashing nonsense happened. It sounds as though his treatment protocol normally involves antibiotics, but he said that he knew I would negatively react to them so he did not prescribe them for me (THANK GOODNESS!). He has me on a hydrocortisone and antifungal suppository (antifungal is preventive - no yeast was found), a bioidentical estrogen tablet vaginally, and a hydrocortisone vulvar cream. I'm only on my second week, and I can tell you that the hydrocortisone vulvar cream has been amazing so far. I was TERRIFIED about the steroid creams causing yeast infections because I've had that happen in the past, and I was also TERRIFIED that the antifungal suppository would burn. Well, so far so good. No yeast infection yet, and the antifungal only causes minor discomfort. I am on this protocol for 4 months before my next follow up test to see how my flora is improving.

Sorry for writing a book. I have so much guilt surrounding my pain since I know I caused it by blindly allowing doctors to prescribe me whatever they wanted and by self treating. So sometimes it's nice to say things "out loud". 

I look forward to the day I can wear underwear and jeans again and when I can leave the house without worrying about constant pain.

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  PainBlogger on Tue Mar 29, 2016 3:39 pm

Don't worry about writing a book. It's useful to others to see 'case studies' of fellow sufferers. I hope you continue to see an improvement with your current treatment regimen Smile

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  Julation on Wed Apr 20, 2016 8:10 pm

Thank you for telling us this story, I might have the same as you. Have the exact same symptoms. I meet on May 3rd with my gyn and hope to have an answer.

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Wed Apr 20, 2016 8:52 pm

Hi Julation - My inflammatory vaginitis was unable to be diagnosed by a regular OBGYN or standard wet mounts. The specialist I finally saw uses a "phase-contrast microscope with high power objectives" (whatever the heck that means!). So just in case your tests come back negative, don't let them tell you there is nothing wrong!

If you have any questions on all the crap I had done to get to this diagnosis (to hopefully help you avoid some of them), please let me know. I'm an open book Smile

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Thu May 05, 2016 1:16 am

Just an update on my treatment and symptoms...

I'm nearing the end of my 7th week of the 4+ month treatment that Dr. Fowler prescribed. Some feedback on the prescriptions:

- The antifungal (Terazol 3 Vaginal Suppository 80mg) does cause my vaginal opening to be sore but nothing like the horrible pain I've gotten in the past from Monistat. Now that I'm only on it once a week instead of three times a week, it's definitely tolerable. Also, I need to meet my deductible before my insurance pays out on prescriptions; so this drug is pricey for me ($138 for 6 suppositories). However, now that it's lasting me 6 weeks instead of 2, I can handle the price.

- The hydrocortisone suppositories don't dissolve very well. Dr. Fowler recommends that you insert a finger and move things around a bit to encourage it to dissolve, but I've found this just ends up having more of it come out when going to the bathroom. The oil base does leak out throughout the day, and it tends to kind of migrate all over the vulva, which isn't pleasant. I don't think I get any burning from it or anything, but my sensitive vulvar skin doesn't seem to care for the hydrogenated vegetable oil. So, if it gets to be too much, I use a light absorbency tampon the next morning for a few hours to soak up some of the oil. I know, I know...not great to use tampons when not on your period, but I gotta do what I gotta do.

- The only complaint I have with the estrogen tablet is that the applicator that it comes with isn't great, but it is more comfortable to use that than my finger; so I deal with it. I'm not entirely sure that the tablet dissolves completely either, but it is what it is.

- The external hydrocortisone cream hasn't caused me to have a yeast infection yet, which is great. The cream base hasn't caused huge problems with clogging pores either (only a few minor ones). Yep, my vulva gets clogged pores with unbreathable bases. Super, right? Some days I think it causes the slightest burn when I put it on, but most often it seems to be soothing (even if it's all in my head).

So onto how I'm feeling... Well, my vestibule pain (acid burn pain) seems to calm down a lot when I'm not on my period, but during the weeks surrounding my period things start to become super sensitive. So, I'm suspecting (like I have for the entire 2 years) that something hormonal is going on down there. Dr. Fowler said this is due to the drop in estrogen around my period. However, this period has been the best I've had for a LONG time. I think there are 2 reasons for this (neither are due to the treatments unfortunately):

1. I've been using tampons. This stops any discharge or blood from coming into contact with my vulva. This is huge because my pain is caused or aggravated by discharge (more sensitive to this during the weeks surrounding my period).

2. Sorry for TMI - this month I've been tucking the tampon string inside of me. I had noticed the string was almost rubbing me raw, but as soon as I tucked the string in, the pain stopped. YAY!

I'm on my 5th day of my period, and I thought I was okay to not use a tampon today because I hadn't even been filling up a light absorbency tampon the last couple days. Well, that was a mistake. Late in the afternoon my vestibule started to become irritated. I ignored it because the discharge that I had was so little. Things just kept getting worse, and I decided to put a tampon in. The pain has calmed down, but it isn't gone. Hoping by tomorrow it will have calmed down some.

I'm not quite sure if the discharge just aggravates my already sensitive skin or if it actually causes the pain. Dr. Fowler's theory is that the discharge is causing it. I think it's a little bit of both with some hormone issue thrown in the mix.

I wanted to keep this documented because when I was trying to decide to go see Dr. Fowler no one ever gave any details during treatment, just after or in the beginning. I will keep posting updates when I think it's important Smile

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Wed May 11, 2016 5:06 pm

Something I've been thinking a lot about lately is why my pain is worse the weeks surrounding my period. I always just assumed that I had some sort of hormone issue/imbalance. Well, I'm starting to rethink that because my cycle has been EXTREMELY regular for years, and if I had some huge hormone upset, wouldn't that be impacted somehow? I would think so.

Anyway, I had been doing some digging, and a lot of articles I've read talk about how it's normal due to the hormone fluctuations for the vagina/vulva/skin to be more sensitive the weeks surrounding your period. Some articles even were talking about how you should avoid getting waxed during certain parts of your cycle due to the increase in pain sensitivity. So, maybe my hormones aren't really the problem. Maybe my skin is just naturally more sensitive during that time, which then increases my discomfort.

I just wish I could put a bandage over my inner labia/vestibule! I can't use any type of unbreathable ointments (e.g. vaseline, baby creams, etc.) because they make my skin very unhappy. So barrier creams are out of the question. Why can't my darn vulva tell me what it needs in plain English already Rolling Eyes

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  WaahwaahUK on Thu May 12, 2016 7:45 pm

I've just read what you said about feeling heightened pain around hormonal times. To add to this, I've noticed that when I've been at my worst pain wise, whenever I've been hormonal I've felt pain generally more everywhere in my body. Even breast pain before my period I've felt more. It's almost like my body just becomes so sensitive and the gynae pain flares. So I've concluded myself that I don't have a hormone problem as such, but that I do feel pain much more during those times. I think I always have, but I've definitely noticed it more with this problem in the past year. I did get my hormones tested and apparently they were fine and normal range and yet at one point I was convinced it must be hormonal! It's such trial and error this condition. I'm definitely more sensitive to pain when hormonal (mud ring my period, ovulation time and just before my period) and my skin seems more sensitive. Hope you are doing well with your treatments.

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Thu May 12, 2016 8:47 pm

I'm so thrilled to hear that I'm not the only one that feels this way!

In the past I've had a hormone blood test (single day test), and my results came back normal (low end of normal testosterone). Then a Functional Medicine Practitioner told me the blood test wasn't taken during the right time of my cycle. So she had me do a hormone saliva test that was taken throughout a one week period, and everything came back normal except for very low testosterone. Now a new OBGYN that I saw told me there is no proof that saliva hormone tests are accurate. But then my AZ specialist (a bioidentical hormone specialist that retired from Mayo) told me that it doesn't matter if my hormone test results are normal because that doesn't have anything to do with how well the vagina uses estrogen. How the heck is anyone supposed to know what is right?? Lol

Years ago I had similar symptoms to you. I could feel every shift of my hormones. When I was ovulating I would have horrible one-sided cramps and my sex drive was high. Then starting the week before my period, I would get insatiable cravings, my breasts were super sore, and I would start cramping several days before my flow started. Within the last year or so this has changed. Besides for this darn acid burn pain I don't have huge shifts in the physical awareness of my cycle (besides my "normal" period cramps and menstruating obviously Wink ).

I'm going to stick it out with the AZ specialist because I still think he is the best option I have at this point. One day at a time, I guess sunny

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  Julation on Fri May 13, 2016 12:09 am

Ladies, I am in the same situation.  I flare only around period time.  My DIV becomes a monster one week before period and disapear when oestrogen kicks back.  I am very regular too and continue to ovulate on day 12-14.  If I had hormonal imbalance, I would not be that regular.  I started asking myself if I was not kind of "allergic" or "intolerante" to progesteron (please don't laugh).  I have migraines, muscular and bone pain, feel sick in my stomach and now DIV.  Something is wrong with progesterone in my body.  Twisted Evil

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Mon May 23, 2016 2:42 pm

Just an update on my "LS" treatment...

So, I'm starting week 10 of treatment, and things right now are pretty decent. However, I am not on my period; so it is pretty typical for my symptoms to be at their lowest. I will have to provide another update after my next period, which is due around May 30th.

Anyways, as I've mentioned in a different post, I chose to get a 3rd opinion on my lichen sclerosus (LS) diagnosis. Prior to seeing my AZ specialist, an OBGYN who specialized in dermatologic diseases of the vulva said I didn't have a skin condition. So I was curious what another doctor would say. The new OBGYN I went to see apparently treats LS pretty regularly, and she said that there was nothing visible that would have warranted an LS diagnosis. She said there was no area of my vulva that she would want to biopsy to even look for LS (the appearance of my skin did not change since the LS diagnosis). So, I have two doctors who said "no" and one who said "yes". The "LS" symptoms are raw, burning, sore pain located in the creases between my labia minor and majora. The best way to describe the pain was an extremely sore bruise mixed with a rug burn. This new doctor told me the steroid cream would treat any inflammatory condition; so just because I've had relief with it that it doesn't in any way confirm that it was LS...just simply means my skin was inflamed and upset.

Well, regardless of what inflammatory condition my vulva had/has, the 2.5% hydrocortisone cream (compounded in a Vanicream Lite Lotion base) has made a big difference (not completely gone, but probably 90% better). My new OBGYN wanted me to stop the cream, but I chose to continue using it as prescribed by my AZ specialist just to make sure I didn't have any rebound side effects from stopping it cold turkey.

So Friday was the first day I was to drop the frequency down to once a day (before bed) instead of twice a day. I was terrified, but things are going okay. After I go to the bathroom in the morning seems to be when my skin is the most irritated...not sure why. Even when I was using the hydrocortisone cream in the morning, my skin would burn/sting for a few hours, but the morning irritation seems to be a little less. I still am uncomfortable but not quite as bad. My vulva still tends to be a bit sensitive to even regular water, but I'm not sure if that is dryness left from not using the cream twice a day (it was also sensitive to water when using the cream twice a day). I actually feel like the discomfort that the cream never took away seems to be getting a bit less, but it is probably too early to tell if that was the cream causing some irritation (it's only been 3 days since reducing the frequency).

I will be keeping my fingers crossed that reducing the cream frequency will actually improve my symptoms even further! sunny

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Tue May 31, 2016 7:50 pm

Sorry, this is going to be a long one!

Update on my inflammatory skin issue (previously diagnosed as LS):

So, strangely enough, reducing the frequency of using the hydrocortisone cream was making my pain worse. Most people would probably assume that it was because the hydrocortisone was keeping my symptoms at bay, but my pain was getting worse after using the cream or when I allowed it to sit on my skin the next day without rinsing it off. Well, thank goodness I listened to my gut and not what seemed to be the logical answer. I chose to stop the cream cold turkey after having reduced the frequency for only one week. The last day I used the cream was on 5/26; so it's been 5 days since the last time I used it.

Every single day my pain is less and less, and the biggest improvements happened within the first 2 days. I am now sitting here with nearly nothing left of that horrible raw burning Very Happy  At night I find that I can now sleep on my stomach (before it would put too much pressure on my skin), or I can sleep with my legs/knees closed (prior to this, allowing my skin to touch too much would be painful). Water doesn't seem to irritate me much anymore either, and the paleness that my last OBGYN had noticed near the top of my vulva appears to be completely gone!

I did notice that for a few days after stopping the cream my labia minor and clitoral hood appeared a bit red and swollen (not painful though). With the steroid cream I had come to believe that they should be fairly thin. Well, 5 days later, my labia and hood are no longer red (a much healthier looking pink), and they have a healthy plumpness (sorry for TMI, but the swelling had me freaked out, and I wanted to share what happened after stopping the steroid).

I do still have a provoked discomfort on my left lower crease area that feels like a slightly sore bruise with a little burning tingle (the pain is delayed - takes it a few seconds after being provoked for it to come in a short wave). It is not raw feeling though!! I have no doubt this may be nerve sensitivity due to the chronic inflammation, but I have faith that with time it will calm down. I obviously haven't had sex or tried riding a bike to see how aggravated that area can get, but if this is all I'm left with, I will count my blessings.

Obviously the cream did not cause this pain because it was there prior to using it, and I do believe the cream helped my skin calm down. However, I also believe that 2 months of applying it twice a day as prescribed was too long, and after a certain point the steroid was causing more harm than good. Sometimes our guts can be right Wink

Update on my inner labia/vestibule acid burn pain caused by inflammatory vaginitis:

So, since the hydrocortisone and antifungal suppositories were still making my symptoms worse 2+ months later, I tried reducing the hydrocortisone suppository down to twice a week instead of 3 times a week, but it was still causing irritation on my vulva. Plus, for several days after using the suppositories I would get this burning discomfort at the entrance to my vagina when there was stuff left from the suppositories that was trying to work its way out (I would get relief when I would go to the bathroom and "release" the discharge).

Well, I chose to stop all internal treatments about 2 weeks early except the estrogen tablet since that doesn't seem to cause me any discomfort. I haven't noticed the discomfort at the entrance to my vagina nearly as much, and obviously I'm not being irritated by the discharge the next day after using the suppository. I do still have some irritation from discharge, but I don't know if this is still from the remaining suppository (takes a long time for that to works it's way completely out) or from the inflammatory vaginitis.

Onto my acid burn pain...this pain is nearly nonexistent outside of my period but seems to start ramping up the week before my period. My period is late again this month, which I'm fine with. The great thing is that this pain has been extremely minimal so far. Sometimes at night or right in the morning I can feel it a little bit, but it feels more like a tear that is a few days old if it is acting up.

So, what do I think has made the difference so far? For many many months I've had to sit or sleep with one knee way off to the side, which helped my skin not touch too much. Well, a few weeks ago I chose to suffer through the discomfort of not doing that because one night I almost felt like I could feel the tear happening when I sat like that. It is far too early to tell if this new way of sitting for me has really made a difference (will have to wait until the end of my period for a final decision), but I'm hopeful.

I'm not saying the suppositories haven't made a difference because I do believe they have, but sometimes I'm curious how much influence just plain old time has had. I will have my test in July to see how much better my flora is doing, and I hope it shows improvement!

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Mon Jun 20, 2016 8:37 pm

Update on my inflammatory skin issue (previously diagnosed as LS):

Even though my skin was feeling quite a bit better since stopping the hydrocortisone cream, I was getting crazy bouts of itching in different areas of my vulva. Of course I freaked out assuming this had to be LS (calm it down catastrophic thinking  Rolling Eyes). However, I finally got the itching to stop on June 10th after washing my vulva with soap as my doctor recommended, and even though I noticed my vulva seemed very dry (think squeaky clean minus the squeak), I was feeling good enough to take a short walk. Well, about 2 minutes from home I realized I had made a huge mistake. The friction from walking caused a flare that I would be dealing with for several days.

So, it was back to putting my investigator cap on to figure this out once and for all (or at least I hoped so). I knew in my gut that using soap or a wash down there couldn't be good for my skin regardless of what my doctor said (I've never used a wash down there before my current doctor recommended it). Yep, it is true that the soap was the only thing to take away the film that seemed to constantly be there, but I felt like this whole process was stripping away all natural oils and healing my skin was trying to do.

I've used YES waterbased lubricant in the past, but with my recent skin issues, it caused some irritation. At this point I didn't care because I needed something to put on my skin to help it heal (and doctors only seem to use steroids). So, I chose to give it another shot. Well, it has been 8 days now that I've been applying YES pretty freely, and I can say that my skin burning, rawness, and itching is almost non-existent for the majority of the day. It took a few days for my skin to get used to having it applied, but now it doesn't cause irritation except sometimes right in the morning. The film is gone or at least masked by the lubricant, too  Smile I sure hope things will continue to improve and that the improvements stay there when I reduce the amount of times I apply YES in a day.

Another lesson in following your gut Very Happy

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  lindsey_taylor on Thu Jun 23, 2016 12:47 am

Emalita I am so happy for you! I'm so glad things are wording out for the better! I will keep this lubricant in mind!

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Thu Jun 23, 2016 7:57 pm

I just received my flora test results back, and there is good and not so great news.

Below are my test result from March 2016:

Squamous Cell Maturation (nl = fully maturated): >50% Intermediately Maturated
# of Squamous Cells per Single KOVA Cell (nl = 20 – 24): 4 – 8
# of White Blood Cells per Single KOVA Cell (nl = 0 – 2): 51 – 75
Concentration of lactobacilli (nl = Q1 – 2): Low, separated by 5 – 6 segment lengths
Excess Non-Lactobacilli Bacteria (nl = none present): Hazy background
Presence of Yeast (nl): nl – no yeast elements identified

Below are my test results from June 2016 (changes from March in red):

Squamous Cell Maturation (nl = fully maturated): >50% Intermediately Maturated
# of Squamous Cells per Single KOVA Cell (nl = 20 – 24): 4 – 8
# of White Blood Cells per Single KOVA Cell (nl = 0 – 2): 0
Concentration of lactobacilli (nl = Q1 – 2): Low, separated by 5 – 6 segment lengths
Excess Non-Lactobacilli Bacteria (nl = none present): Speckled
Presence of Yeast (nl): nl – no yeast elements identified

I no longer have a ton of WBCs present, which is fantastic...actually, my result was zero  cheers  This, I assume, means my vagina isn't overreacting to a nonexistent infection anymore. My bad bacteria concentration is now "speckled", and my specialist said that means they are "here and there" instead of heavily concentrated when my test showed a "hazy" background.

Unfortunately nothing else changed as far as my squamous cell maturation or the concentration of lactobacilli. I have been taking two Fem-Dophilus capsules a day orally for about three months now, and I think this proves that it hasn't worked for me Sad  I'm not willing to use them vaginally; so I guess I will just save some money on not buying them anymore!

My specialist's next treatment option is upping the dosage of my bioidentical estrogen tablets, which doesn't give me much hope, but our vaginas are driven heavily by estrogen; so maybe it will help?? My next follow up with him is supposed to be in 6 months (December), and he said I need to wait another 4 months to see a difference with the higher estrogen dosage Crying or Very sad

Below is a link to the part of his website that talks more about the items being tested:

http://www.fowlergyninternational.com/diagnostics

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  lindsey_taylor on Sat Jul 02, 2016 1:22 am

Oh wow, WBCs down to zero! That is amazing! But what do the bad bacteria results have to do with increasing Estrogen? I mean, how does the doctor think this will help? I'm wondering if I should ask my doctor about just pure estrogen cream but... doesn't that increase the risk of cancer? Oh goodness....

Please keep us posted. I am hoping for nothing but the best and I am overjoyed at the good news that you have received! I'm sorry that the probiotics didn't help! Sad

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Sat Jul 02, 2016 3:26 am

Unfortunately my specialist isn't the greatest at explaining things, but below is some information from The V Book on the benefits of estrogen:

"During the first week of the cycle, menstruation, estrogen is low. As estrogen picks up, the cells of the vaginal lining multiply under its influence. Secretions begin to increase. At midcycle, just after ovulation, estrogen levels suddenly plummet and progesterone rises. The buildup of the vaginal lining stops. By now, the lining has become thick and rich in a special kind of starch called glycogen. Glycogen is broken down by the normal bacteria that live in the vagina into glucose, which is their energy source. After the bacteria have used the glucose, the end product is lactic acid. This process is thought to contribute to the acid environment of the vagina, which encourages the survival and growth of such acid-loving organisms as the lactobacilli, one of the major groups of “good” bacteria living in the vagina. When the vagina is acidic, the lactobacilli can stick to vaginal epithelial cells and stay in the vagina...Estrogen is well known for its ability to thicken skin, increasing its elasticity by building up collagen in the tissue...Currently, topical estrogen treatment is part of the medical management for VBD [vestibulodynia] suggested by many clinicians; it is believed to soothe, thicken the vestibular epithelium, and promote healthy nerve functioning."

I believe my specialist's overall belief is that if the vagina is provided with a high level of nutrients (i.e. estrogen) it will "naturally" heal itself. I only use bioidentical estrogen, which has a far lower risk of increasing the chances of cancer. Plus, I have no interest in horse urine based estrogen, which is the source of most non-bioidentical estrogens (ick) Wink

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  lindsey_taylor on Sun Jul 03, 2016 8:18 pm

Thank you so much for the information. May I ask you what the dose of your vaginal estrogen is now and how often and how long you are meant to use it? I'm willing to make a similar suggestion to my doctor and I want to ask her too if she will test my lactobacillus count and wbc count when she swabs this discharge next time.

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Sun Jul 03, 2016 10:23 pm

The darn pharmacy that my specialist uses hasn't actually called me yet about the new Rx, which is frustrating. So I'm not 100% certain on the new dosage. My current dosage is Estradiol 100mcg and Estrone 60mcg in a K-100 Base (both combined in a single tablet). I believe my new dose is something like Estradiol 150mcg and Estrone 100mcg, and I insert one tablet vaginally every other night. From my conversations with some of his other patients, he recommends estrogen forever, but the frequency is dropped to two or three times a week instead of every other night. I won't know what my maintenance regimen is until I'm "healed".

I'm not sure how many compounding pharmacies work with bioidentical estrogen in a tablet instead of an obnoxious irritating cream, but the one he uses (Belmar Pharmacy in Colorado) is out of state and does ship to me. Just in case you do decide to go this route and need a pharmacy Smile

Good luck, and keep us updated on what your lactobacilli and WBCs come back as!

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  Saoirse on Sat Jul 23, 2016 6:43 am

I visited doctor Fowler too. I have not done the follow up yet. I just did not feel it would help with just the estrogen. Even when I was on his clyndamidacyn, I still got the BV flared up. I was in tears and had to visit my Gyn and it tested for bv was showed up, then another infection of Staphs, my WBC was ridiculous high that my Gyn said she was not able to count. So it is good for you that you got WBC down to 0. My symptoms are not improving. I still have burning and itching.

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Sat Jul 23, 2016 1:02 pm

Hi Saoirse,

What did Dr. Fowler diagnose you with? How long did you give his treatments a try for?

Starting on Monday I had a horrible pricking sensation internally almost like I had a sliver inside me (weird feeling, I know), and it was extremely uncomfortable to lean forward. I'm not sure what caused it, but only a few weeks earlier I had started my higher dose of estrogen. Then, like you, I didn't think the estrogen was doing anything so I stopped. I had skipped 5 doses, which would be about 10 days, and then this discomfort started.

I don't know for sure whether stopping the estrogen caused this or not, but after being back on it for 3 doses the discomfort is pretty much gone. So since it isn't causing any irritation to my knowledge, I'm going to keep with it for now. I don't ever want to feel that discomfort again!

I'm still battling with my vulvar skin pain, but I'm losing hope that I will ever get rid of that Crying or Very sad

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  Saoirse on Sun Jul 24, 2016 5:17 pm

I followed his treatment timeline. I just did not see the improvement, even worse. You mentioned about his good reviews, I did not give and do not intend to do because I'm so tired to find rhe solution for myself. I guess it would be the same for others. Yes he could help some, but it does not mean he can help everyone.
If the estrogen help you then it doesnt hurt to keep continue I think. Also I think you should still give the probiotics more time. Maybe the environment is not that ready for the good bacteria to live in there, you never know when it will be ready Smile maybe soon and uou dont want to miss that time to build up the flora.

I just order a gel call actigel from uk to try to see if it can help me balance my ph for the good bacteria to grow.

I'm trying meditation now too. Maybe it can help me cope with this fact. Mostly when I am meditated I hardly notice my symptoms. Also during the night if I woke up I feel so normal. Also normal when I just woke up. Maybe it has somethings to do with my nerve system as well. I dont know. Still searching for the answers Smile

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Sun Jul 24, 2016 6:30 pm

I wasn't trying to say he can help everyone or that you should have continued with his treatments. I was just curious as to how similar our situations were. I personally have found large pieces of his protocol too irritating to follow, and with his horrible response time and bedside manner, I'm by far not his biggest fan. Plus, he misdiagnosed me with lichen sclerosus, which caused an extreme amount of anxiety...certainly not something I needed added to my life right now.

However, clearly he has helped a lot of women (I've personally spoken to three of them), and he was one of the only specialists I could find that didn't assume all vulvodynia was caused by nerve issues. So, I just want to be open and honest about my treatment experience with him instead of just saying his treatments didn't work for me. Hopefully this will help other women make the best decision possible as to whether or not he is the right specialist for them (I desperately wanted more details on him before I saw him, but I couldn't find much).

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  web96 on Sun Sep 04, 2016 5:03 am

Hey emalita! Have you noticed any improvement in switching from a topical cream to a vaginal suppository for the estrogen? I've only ever used a cream (not currently using it) so it would be good to know if you don't mind flower

Hope you're healing well!
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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Sun Sep 04, 2016 1:14 pm

I had only used topical estrogen cream (not bioidentical) from my regular gynecologist for maybe about a week and then stopped because it was too irritating. So I've only been on the vaginal estrogen tablet (bioidentical) for an extended period of time.

My bioidentical estrogen is compounded in a K -100 base, which is a tiny little tablet, and I prefer that over the cream/oil bases. I think it has improved my internal health, but it also could just be plain old time that has made this difference since it's been about 6 months since I've been using it.

Unfortunately I don't feel like the estrogen has helped my vulvar skin at all though.

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Interested in your experiences

Post  LT on Tue Sep 20, 2016 12:49 pm

Hi. I am really interested to hear about your experiences with Dr.Fowler. I've been going through the same mess as everyone else here. I was normal, got a uti and have not been the same since. I'm post menopausal and had vaginal atrophy, but nonetheless was still comfortable. So the uti cleared with antibiotics but the burning and rawness continued. Everything my gym tried: vagifem, yeast creams, compounded estradiol blah blah blah just made things worse and worse. She out me on 10 mg of elavil, which maybe? helped a little and referred me to a vulvar specialist.

He started me on a compounded estradiol which took forever to get used to and build up to as that burned like crazy. For months I went to bed every night with ice. My vulva,vagina and sometimes my bladder were almost always burning from mild to intense.

During this time, I have been on lots of antibiotics as I had the uti and a failed root canal and then extraction and pneumonia. My dr always sent out a yeast culture which never came back positive until my last visit last week.

I started pelvic pt last spring and was feeling way better, although I think it was as much from the 10 mg of rectal Valium she suggested as much as the pt. then she sent me for trigger point injections to get over the final hump, which threw me into a horrible flare - up literally all night for three nights - and culminated with another uti. Saw a big deal interstitial cystitis expert, but they had a firm protocol of bladder installations and if I responded to those, then I could assume some of my pain was referred from my bladder. She gave me Uribel which made my vagina and vulva burn worse and I refused the installations feeling sticking a catheter repeatedly in my urethra was not going to help.

I am now on the second of three diflucan over 9 days which has seemed to help but. But fear that is temporary. All the compounds of baclofen gaba etc just caused further irritation. My doc wants me to go on oral gabapentin but I really don't want to.

Anyhoozle! I have read about Dr. fowler of course and his zillions of glowing reviews. I also emailed with one of his contact patients. The whole internet presence he has seems too good to be true, as if he has one of those services that scours for negative postings. I would love to hear about your experience as you go through treatment with him. I have done the vulvar care measures since this all started with no change in status. I did get his kit. But I can't bring myself to wash my vulva with soap, although I try to use lots of water (which often burns). I tried, but only for a short time, the rinse with the Burroughs solution after peeing, but that too seemed to irritate.

His method makes sense to me as I keep thinking maybe there is a low level bacteria and/yeast. After all, there had to be a tipping point before it will show up in a test.

So please keep me posted and I would love an honest unbiased review from you. Live in NY but would be willing to fly out if he is the real deal. Thank you!!!



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