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    » What's next?
    Today at 10:07 am by amyhp

    » HELP!! Topical cream?
    Mon Apr 16, 2018 5:49 pm by Sad

    » Please tell me this can get better
    Sun Apr 15, 2018 11:31 am by amf329

    » Pressure to have sex.
    Sun Apr 15, 2018 2:00 am by Sad

    » Vulvodynia and other neurological diseases?
    Sat Apr 14, 2018 8:00 pm by wuhujen

    » I'M NEW - Do I listen to my gyno who I feel has it wrong?
    Sat Apr 14, 2018 7:57 pm by wuhujen

    » I wanted to share a resource that has made a huge difference for me
    Wed Apr 11, 2018 9:28 pm by amf329

    » Loneliness
    Wed Apr 11, 2018 11:36 am by sophiarp

    » I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
    Fri Apr 06, 2018 4:06 am by Warrior2010

    I'M NEW - Do I listen to my gyno who I feel has it wrong?

    Fri Mar 09, 2018 6:17 pm by Tunes25

    Hello!

    I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

    To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

    Comments: 4

    I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

    Mon Mar 12, 2018 4:33 pm by totallycured

    Hi,

    Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

    Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

    Comments: 3

    Hi Im from Australia :)

    Sat Jan 08, 2011 1:08 am by emma

    Hi girls... I live in Australia.
    I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
    Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

    Comments: 35

    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: 14

    Lidocaine with condoms?

    Wed Mar 21, 2018 10:44 pm by AEM1

    Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
    Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

    Comments: 1

    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: 23

    Recently Diagnosed which has motivated my research study

    Tue Mar 06, 2018 4:54 pm by ebclose2free

    Hi everyone,

    My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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    MAY HAVE FOUND A CURE- PLEASE READ

    Thu Feb 15, 2018 10:04 pm by infinitelywondering

    Dear all,

    Today has been the day I've been waiting for. The day something FINALLY makes sense.
    I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


    after having a vestibulectomy with no success, I decided to visit …

    Comments: 3

    New and desperate for advice

    Sat Mar 03, 2018 2:37 pm by srbry

    Hi everyone,

    I'm new here and was told to find a support group because this is all getting a bit much really...

    I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

    Comments: 3


    Welcome Newbies!!!

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    Welcome Newbies!!!

    Post  Sebby (Admin) on Thu Dec 03, 2009 10:10 pm

    To all new members who will soon join I hope!!!! a big hello and thank you so much for joining please introduce yourself and I hope that we can grow in numbers, confidence and healing....

    Sebby (your Admin) Very Happy
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    New Member finally diagnosed after 2 years!

    Post  lilly on Sat Jan 16, 2010 7:28 pm

    Hello. My name is Lilly and I was just diagnosed with vulvar vestibulitis. I went to a specialist and the treatment regime he prescribed was a low oxolate diet, physical therapy, and Gabapentin 100mg. He said there was a 30% success rate, but it was worth a try before attempting surgery. I was told the surgery has about a 90% success rate and am very interested in having the surgery if this 1st treatment doesn't work. Let's face it, the success rate is pretty low, so I don't have high hopes. But, I'm willing to give it a try. I have had nothing but problems for years in this area and have been prescribed antifungals, etc...I have also had surgery for cancer of the vulva a couple years ago, had surgery, and have had a full recovery.

    Is there anyone out there that has had surgery to correct this problem? Has anyone taken Gabapentin? I am also a liver transplant recipient and so the doctor is a being very cautious about the surgery option and I am trying the medication route first. I had an autoimmune disease that attacked and destroyed my liver and I am wondering if maybe this is some sort of automimmune syndrome. Does anyone else have any autoimmune disorders along with vulva vestibulitis? I would love to hear from someone. Thanks. Lilly.

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    Hi Lily

    Post  Sebby (Admin) on Sun Feb 14, 2010 11:21 am

    Hi Lily and thank you for joining.

    Hope you got my email ok?

    Please keep us informed of how your treatment is going. I am hoping we get more women joining who can share more stories on what treatments worked for them.

    Take Care and keep us posted

    Sebby
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    Re: Welcome Newbies!!!

    Post  Sebby (Admin) on Sun Mar 28, 2010 6:02 pm

    Hi susan, thanks for posting. What is your website called? I greatly appreciate any help in advertising the forum so many more women know its here.
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    Re: Welcome Newbies!!!

    Post  Sebby (Admin) on Wed Jun 23, 2010 11:31 pm


    Welcome Maggie

    I hope u can find help and support from this forum.

    I have heard that Vulvodynia can also cause pain all over including anus area

    Have u read dr Glazer's book The Vulvodynia Survival Guide?

    I too was given cream after cream until I demanded to see a gynea and the doctor was reluctant to send me!! why??

    Well since then I have change dr's!

    I have also had advice from this forum to get refered to a pain clinic, my appointment is coming up on 2nd August...wish I didnt have to wait so long

    It might be a good idea for you to also ask to be refered to a pain clinic I have been told that they are better at treating pain than the gynea's even in the vulva area.

    Take care and Godbless

    Sebby (Admin)
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    Re: Welcome Newbies!!!

    Post  Sebby (Admin) on Wed Jun 23, 2010 11:48 pm


    Mmmmm I know its late and im tired but I swore I saw a post from Maggie here.....and then it disapered!!

    Im the Admin, I should know how to run this thing! lol
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    Re: Welcome Newbies!!!

    Post  naomi on Thu Jun 24, 2010 2:39 pm

    hehe! thats made me chuckle! Very Happy
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    Re: Welcome Newbies!!!

    Post  Sebby (Admin) on Thu Jun 24, 2010 10:02 pm


    Ugh! Im sooooo daft duh! lol scratch
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    Re: Welcome Newbies!!!

    Post  jules on Thu Jul 01, 2010 1:16 am

    Hi Lilly,

    I am on Gabepentin. I think 100 mgs if VERY low. I was actually already on Gabepentin when I was diagnosed. I first was prescribed 300, then 600, then 900 and so on. I am currently on 3000 mgs. I felt no relief at all, even when I was on 1200 mgs. The most you can take is 3600 mgs. As far as the surgery. i had a consultation. However, I have generalized Vulvodynia (not concentrated in one area). As a result, the surgery would not relieve my pain because it is only done in the Vaginal opening. The Gabepentin probably cut my pain by 50%. That was not enough. I went to a pain clinic, had a couple of spinal blocks (that did nothing), then I was prescribed Lyrica 50 mgs first. i had two weeks of little to no pain (that never happened before). Unfortunately the pain came back. I am now on 150 mgs of Lyrica, along w/ the Gabepentin. I do have pain but, it is nothing like it was before.

    I have to sit on a foam donut no matter where I am. I have one at work and home. Today I carried a pillow in my bag and used it at a training where I had to sit the whole day. If I have pressure on my Vulva (sitting for more than a half an hour) then I will have pain. Once again, the pain is not as bad as it was. I also have a prescription for Vicodin. I do take that almost daily to help w/ sitting. I recommend that you go to a pain center prior to surgery. Although if surgery was an option for me, I am sure I would have scheduled it immediately. I have seen posts on the internet from women who have had the success w/ surgery. I have also been told it could create more problems.

    As far as an autoimmune disorder, i have read online that many women (I think up to 25%) who have Fibromyalgia also have Vulvodynia. Fibromyalgia is an autoimmune disorder. It sounds like there could be a connection for you. However, the experts have never called Vulvodynia an autoimmune disorder. They just don't know enough about this damn disorder!

    Hope this helps.

    jules

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    Re: Welcome Newbies!!!

    Post  Sarah001 on Thu Jul 01, 2010 11:45 am

    I've got Fibromyalgia and Vulvar Vestibulitis, I've also got Hypermobility Syndrome which is weak and faulty connective tissue. There are a couple of others that could cause vulvar problems, Behcets syndrome and Sjorgens syndrome, but they aren't common and blood tests usually rule them out or a biopsy will if the blood tests aren't conclusive. The theory behind it being related to fibro is that it's nerve related and the theory behind it being hypermobility related is the skin is affected by the faulty collagen so the skin is too fragile.

    I've seen alot of sites saying surgery is often very effective for a while but the long term results aren't as promising.
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    Re: Welcome Newbies!!!

    Post  jules on Fri Jul 02, 2010 12:43 am

    Sarah..I'm so sorry you have to deal w/ so many different illnesses. I hope you are on medication or receiving treatment that helps. The Sjorgens Syndrome piece is interesting to me because my mother has that disorder. I do not have any symptoms. But...the connection between autoimmune disorders and Vulvodynia makes me wonder about my condition...considering my mom has an auto-immune disorder and I have a nephew w/ Autism (also thought to be seen in children w/ autoimmune disorders). I hope Lilly checks back to see our responses. Sometimes people join, post and never come back.

    hope you're doing alright. today and yesterday have not been good "pain" days for me. I am hurting bad today.

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    Re: Welcome Newbies!!!

    Post  Sarah001 on Fri Jul 02, 2010 11:44 am

    Sorry you're having some bad days Julie, my skin is really sore at the moment too because a doctor in her wisdom gave me a super potent steroid ointment to use and it burnt my skin. Rolling Eyes I'm seeing the same doctor today to tell her this.

    My physio is convinced mine is pelvic floor related because my pelvis is very hypermobile and problematic (not to mention extremely painful) and I have all kinds of muscle imbalances around it so it's not too much of a leap to think this is related. My doctor however thinks it's a skin condition so I'm getting nowhere fast.

    I'm actually intending to make some Goldenseal ointment, I've tried to find some to buy and nowhere seems to stock it so I've decided to make my own, Goldenseal is supposed to be a good healer of the mucous membranes so once I get some made I'll give it a test run!

    I'm really glad to find someone has been on here today, I often check and find I'm the only person who visits regularly and therefore the only one with no life!! Laughing
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    Re: Welcome Newbies!!!

    Post  Sarah001 on Fri Jul 02, 2010 11:47 am

    I forgot to ask if you've ever been tested for autoimmune antibodies? It's a simple blood test so not too much to ask if you suspect it. Do you have any other symptoms that might make it a possibility? We have tons of illnesses in our family and they mostly affect the females so I didn't stand a chance really with those genes!
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    Re: Welcome Newbies!!!

    Post  jules on Fri Jul 02, 2010 11:54 pm

    Sarah...ha ha! I'm sure you have a life...or could it be that I don't either? LOL. No..I work full-time, have kids, a husband, many friends and a very busy life. I have not been tested for any autoimmune disorders and I have no other symptoms that would suggest I have an autoimmune disorder. As for the ointments, creams etc. they ALL burned my skin terribly. I believe they actually made my Vulvodynia worse. i tried them all. I think this disorder can look like a skin condition and I'm sure many women have skin conditions. However, for me, I have noticed that when the pain is at its worse, my vulva is bright red. It is not red when the pain is not there or is only there a little. Of course, the redness can make it look like a skin condition. There is also inflammation of the skin for some women. I had some in the vaginal opening. I saw an allergist for this condition. I wanted to rule out allergies as a cause..although there may not be a link between Vulvodynia and allergies (but a recent study done in MN. shows there could be a link). At any rate, I have seasonal allergies and I am allergic to dust. I take drops for this. I have not noticed a decrease in pain.

    Your doctor should do a skin biopsy on you. That will either rule in or rule out a skin condition. I had this done and learned I do not have a skin condition.

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    My Lovely Story

    Post  Kya on Wed Aug 18, 2010 4:15 pm

    Hi, everyone!

    I found this forum through a google search. The board on the main vulvodynia site seems hard to use, and so I thought I'd try to find another.

    Anyway, I'm 32, and was diagnosed over a year ago, but have had symptoms for a year and a half or so. It started when I sat in a hot tub with my then new boyfriend (still together). The very next day, I felt as though I was getting a bladder infection. I'd only had 2 of them in my life up to then, but you don't forget how that feels, right?

    Well, within days, I decided it wasn't that, because I had vulvar irritation/redness and burning. I'd also never had a yeast infection before, but used the over the counter stuff anyway just in case that's what it was. There was no change, so I went to my gynecologist, who ran a bunch of tests for STDs, bacterial infection, yeast, etc. Pending results, she put me on Diflucan and gave me a steroid cream.

    All tests came up negative. When nothing was helping, I went back again, and had a pap smear plus an HPV test where they look for HPV DNA in general-All negative.

    The skin was so inflamed that I had small, red lesions..so I went back yet again, and she did a biopsy. It was reviewed by a pathologist-nothing found. She removed the 2 small lesions I'd found and tested them along with some other skin.

    Later, I found a dermatologist who specializes in Vulvar issues..her own pathologist reviewed my biopsy, so that was twice it was checked-nothing still.

    Here's where we started the great drug parade.

    Elavil-caused kind of a numbing effect, but did little else. Made me a zombie, and..due to intense..and I mean INTENSE cravings for anything sweet, I gained 16 pounds. This was not okay with me..I'm vain, and always bust my butt to stay slim. Since the drug was hardly helping anyway, I dropped it, and lost the weight with a low carb diet that I am still on today. Actually, I lost more than I'd gained, bringing me to a lower weight than I originally was anyway.

    The dermatologist told me not to use anything but "a bit of petroleum jelly, if that." Easy for her to say, huh?

    I found an internal medicine doctor nearby when I couldn't get an appointment with the derm specialist for months, and she put me on Neurontin, along with a 6 day course of steroids. I had maybe 2 days of relief after the steroid pills, but that was it, and even with higher and higher doses of Neurontin (up to 1500 mg/day) I didn't have much luck.

    We also tried Cymbalta-nothing at all. Lexapro- slightly helped my mood, but that was about it.

    I'm pretty much at the end of my rope with all of this, and feel that the diagnosis is just a word for "We have no idea.."

    I feel it has to be *something* since it began so suddenly, and because I had never had any problems in that department before.

    I've found a specialist or two in my general area for vulvodynia, and plan to make an appointment when my new insurance kicks in..and I've switched to mild soap/laundry soap, take magnesium citrate daily, etc.

    Has anyone here been lucky enough to be diagnosed with something besides vulvodynia? Any rare form of fungus, bacteria, etc that was causing the issue?

    My main symptom is burning. Constant, unprovoked burning. Redness, a sort of raw, dry feeling. ALL the time. There is no one spot, but it seems to be worst near the vaginal opening.

    I have no itching, discharge or odor. My gynecologist was not able to see any abnormal discharge upon examination any of the 3-4 times I saw her.

    I'm even having some water from the hot tub tested in a lab next week...just to see if there is any funky bacteria or fungus or anything to be found there.

    I went off the birth control pill when I thought it might be making things worse, so I don't have unprotected sex..I hardly have it at all, actually, and when all this began, I even made my boyfriend go to his doctor. He tested negative for Chlamydia, Gonorrhea, Trich, etc.

    I don't know what else to do, but any suggestion is more than welcome!

    I will check the board, but anyone here is free to email me at KaskyaRCK at AOL dot com if you have any input or ideas at all!

    Thanks so much, guys.

    Kya


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    Re: Welcome Newbies!!!

    Post  Sarah001 on Wed Aug 18, 2010 6:21 pm

    Hi Kya, the way yours started sounds just like mine! With the exception of the hot tub of course! I had UTI symptoms and vulvar burning and soreness but tested negative for a UTI. I even had blood in my urine back then but apparently still no infection. Like you my red sore skin has not gone away. Also like you I'm not convinced "vulvodynia" is even a diagnosis as it's just a description of symptoms that they can't explain. I know one theory is something such as a UTI, yeast infection, trauma to the area etc sets off the skin inflammation and it doesn't heal properly because of tension in the pelvic floor reducing correct blood flow to the area, so it's a self-perpetuating cycle of inflammation that doesn't go away which is recognised by your immune system as an injury so more inflammation is pumped at it in an effort to heal the perceived "injury". But of course the injury doesn't exist so the inflammation just causes more pain and problems. Rolling Eyes

    Have you had the resting tone of your pelvic floor tested to see if you have any spasm? I recently had mine done and mine was found to be at a truly astounding 20 when it should be about 2-3. I actually have hypermobility of the pelvic joints though so I knew some spasm would exist through that. It's worth getting checked out just in case.

    I take Amitriptyline which I think is Elavil but Ami is the European name (I could be wrong!) and I find it helps a bit so I'm going to increase my dose as high as I can go and still be conscious! I know it can cause weight gain which is a worry for me too (my wobbly joints couldn't cope with any excess weight!!) but so far I haven't had any increase in appetite or cravings from it so fingers crossed I won't balloon anytime soon!

    Like you I was certain I must have an infection of some description but nothing showed during any tests or even having a swab grown in the lab. Apparently this problem usually does just appear suddenly and coincide with feelings like UTI or thrush symptoms. I don't know why, neither do the doctors apparently!
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    Re: Welcome Newbies!!!

    Post  naomi on Fri Aug 20, 2010 10:19 am

    yep ditto! bar the hot tub too! Smile

    Ive had 'lovely' yeast infections and bacterial cystitis for the last ten years...since I started having sex. Nearly everytime I had sex, yeast infection blah blah blah, the fluconazole started loosing effect, since leaving me with constant rawness and burning around my vaginal opening and it randomly flares from day to day externally. sometimes with discharge, sometimes reallllllllly dry. Sitting, walking etc hurts.

    I know if I was a virgin and never laid a eye on a willy I would be symptom free now! dammmmit! But I def agree, *something* has caused this and Im darned im gona let my doctors give up on me....it bloody hurts!

    It just all completely screws me over mentally though. They can put man on the moon but when it comes to researching into ladies la-la's.....wheres the sense?!!

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    Re: Welcome Newbies!!!

    Post  jules on Sat Aug 21, 2010 4:44 pm

    la la's and willies....LOL...love the UK language...you crack me up. speaking of hot tubs, i have a perfectly good hot tub in my backyard w/ no water in it. the hubby stopped filling it up when i could no longer hang out in the tub w/ him. my symptoms started w/ a possible UTI, then what i thought was yeast infections (no yeast)..but, was put on antibiotics for UTI...causing months of trouble. then every damn cream imaginable which made the skin even worse. at any rate....let's tell NASA from now on, we need their money to research our La la's, cause damnit w/out our La la's men would have miserable lives. Ha ha!

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    Re: Welcome Newbies!!!

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