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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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 …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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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 …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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I have a question?

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I have a question?

Post  grassy on Mon Jul 18, 2011 7:53 pm

Ladies? I'm cindy and new here. my problems all started with a antibiotic too. That went into a bad yeast infection. And the v skins burn still(one year later) exactly where that infection seemed to hit me. (right side skins). Ok some people are saying i have pelvic floor. I dont think so. Heres why? because I never had any v pain, and i'm 50. It started with a yeast. It helps some to take dilflucan. I had sores down there, that healed up with clob, and have off an on sores on my tongue. One doctor said Lichen planus maybe. But right now, there is nothing to see that looks wrong there(v) outside of some redness, that comes and goes.
Now How could a person tell if it were pelvic floor issues? is there any way to tell? as it is now, i go to a chiro three times a week for a bad neck. No way do i want to do a PT the other days! LOL i'd be at a doctor every day, and i cant afford it either. Is there anyway to tell WHAT i have? Have seen 4 doctors and to date no one will do a simple test to look for yeast. To either rule it in or out. any body have any thoughts or ideas? we have no clinics around either. Very rural area. Everything is miles away. Oh also I home test my V ph. 4.5 and also do a uti home test clear. I've done this over 12 times. Normal. Also had a bacterial culture, normal. herpes. I even did a herpes just incase it was dormant and surfaced. Negative. At the time this all started. No sex involved. i am stumped. I even have a microbiologist girlfriend,who is very brainy, she's stumped too. Doctors are not helping, nor do they seem to want to help. cindy

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Re: I have a question?

Post  Sebby (Admin) on Mon Jul 18, 2011 8:34 pm


Its terrible that the doctors will not test for yeast! Find a doctor that will, or make a complaint. I dont see why the doctors will not do this? Doctors really do my head in sometimes. Maybe you need to ring around a few clinics or write to them to see if there is a doctor not to far away who would do a test.

As for Pelvic Floor issues, I saw a Vulval Specialist who after examining me said my Pelvic Floor was going into spasm. She did happen to know about this theory so I was lucky she was knowledgeable. But to be honest I just made a guess at it prior and decided to try this route just to try something.

I had a video consultation with Dr Glazer after purchasing the biofeedback equipment and after putting in the vaginal sensor the lights on the biofeedback machine did not hold still very well. They went up and down when I contracted my pelvic floor. So he said this was a good indication that it was going into spasm.

I would say that you would need to be examined by a womens physio to see what they say about your pelvic floor or email Dr Glazer as he does answer questions. His website is www.vulvodynia.com and there are biofeedback articles on there

I have had a break in treatment and just got back to it so it will be a few more months before I know if it is really helping. Other members on here have PT so they will be able to tell you about that.


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Re: I have a question?

Post  Coldchris on Tue Jul 19, 2011 12:01 am

Mine also started with antibiotics. (Unfortunately, I have been on them again recently, but I am trying to control the flares). If there is a way you can insist on a yeast test do it. Both a swab and a culture. Swabs are not as accurate as cultures, so you want both. Mine always turned up negative and here is why.

I did have a yeast infection. I believe it got into the skin. Even when the yeast infection was gone my immune system went into hyper drive and attacked. Hence, the redness, swelling and burning for me. It was my immune system over reacting to kill a threat that was gone. Mine is vestibulitis brought on by a hyper immune response. I would test negative for yeast, but the reaction was still there because a hyper immune system actually is attacking itself at that point or even hint of yeast. It feeds itself. So, after countless appointments with licensed un-professionals, I sought the advice of an expert, who was able to diagnose me. My treatment is a long course of diflucan and steroid cream. Diflucan to get any yeast in check and steroids to calm everything down and let it heal. I call it my angry vagina on steriods. I take it with me where ever I go.

When the flare ups get bad or even when I feel like it, I make myself a nice sitz bath with domeboro (antiseptic believe it or not). It stings a bit at first, but really worked for a nice soak and to calm things down. Also used for rashed, hives, etc.

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Steroid use

Post  Zazu on Tue Jul 19, 2011 3:54 pm

Hi Coldchris,

I love your sense of humour - "angry v. on steroids"! It makes sense to completely eliminate yeast from the equation if constant infections have set off your vestibulitis/provoked vestibulodynia. Have you also tried the yeast free diet (candida free diet)? You might want to take a good probiotic as well.

A word of caution about prolonged use of topical steroids. They can be helpful for awhile, but they can also be very damaging if used long term. I'm a bit of a nerd, so forgive me, but I did some research for you on that. The advice I've received is to put all natural oils - from olive oil, coconut oil, almond oil, sea buckthorn oil and my gynae says to apply Crisco. This can help your skin heal without the other damaging effects. Best to you!

Therapy with potent topical corticosteroids should be limited to brief or short-term use. Long-term use may induce telangiectasias, skin friability, striae formation and easy bruising. Potent steroids can also cause periorificial dermatitis, a rebound inflammatory reaction with erythema and a burning sensation that occurs as the steroid is withdrawn. A cycle of vulvar dermatitis may become worse as the patient treats the erythema and discomfort with the same potent topical steroids that started the problem.

http://www.aafp.org/afp/990315ap/1547.html


In addition, your doctor may advise that you use a mild steroid ointment such as hydrocortisone for a week or so. This often settles the itch within a few days. It may also help to break any itch-scratch cycle that has developed. However, you should not use steroid ointment regularly on the vulva as it can have a thinning effect on the skin with long-term use.

http://www.patient.co.uk/health/Pruritus-Vulvae.htm

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Re: I have a question?

Post  Sarah001 on Tue Jul 19, 2011 7:26 pm

Cindy having sores in both your V area and mouth could well be Lichen Planus, especially if the Clob worked. The theory behind the pelvic floor being to blame is that an infection or insult to the vulvar happens, the pelvic floor tightens up and even once the infection has gone the tight muscles will not allow correct circulation to the area so the burning and soreness can't heal, the muscles get full of lactic acid which can cause burning and soreness and the nerves start firing pain signals to try and help you recognise there is a problem. I have an incredibly tight pelvic floor and know if I can manage to keep it from clenching for a few days in a row my V calms down alot so it's definitely a factor. One thing you could try is inserting your finger into the vagina so it's just inside, feel for any tight bands and in particular press into the muscles in the 5 o'clock and 7 o'clock areas as they often hurt alot. Any tightness or pain definitely means PF problems but if there isn't either it doesn't 100% rule it out, that can only be down using a biofeedback probe to see what is happening exactly and that would be an appointment with a Women's Health Physio. The fact you have neck pain may be relevant as the neck and pelvis are connected in lots of ways, hence the cranio-sacral therapy lots of Osteopaths do.
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RIGHT!!!

Post  grassy on Thu Jul 21, 2011 8:34 pm

BOy you ladies are smart!! I almost think that my yeast got into the skins TOO, and my system went an allergic reaction to any small yeast in there. I have another question? this thing is driving me nuts!!! it doesnt seem to matter what i do. It comes on when it wants too. Heres the symptom.
When my v skins burn, it seems its overlapping with a bladder issue. I have tested my urine 12 times. No uti. My bladder seems full, and i squeeze a last drop of urine out. Pop goes one last drop of pee. Those are the days my v skin burns. I am wondering if its IC over lapping with vulvodynia. I can not trace it to a specific food i ate, or anything. I have tried washing gently with plain water, tried not washing. Nothing changes anything. Two good days, two bad days. anyone else get this urine symptom? Is this part of the vulvodynia madness?
The days i burn the area looks red. The days i dont, its not red. I can not figure this out. You guys know. I am doing the chem free thing. cotton underware. Cut back coffee, dont eat any oxlates anyway. No sugar. nothing works, and no doctors that know a darn thing. CINDY

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oNE MORE THING

Post  grassy on Thu Jul 21, 2011 8:38 pm

oh on the steroids. yes yes. I know. I am only using a teeny teeny bit, experimenting. scared to death of it in a way of causing more problems. so i go slowly on everything. Thanks!!!! everyone. cindy

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Re: I have a question?

Post  jules on Sat Jul 23, 2011 11:12 pm

Grassy, my condition started the same way. After months of treatment for Yeast (never a positive test), i was treated w/ several creams/gels and that made my condition far worse. The burning was horrible. It seems that many women who have IC, may also have Vulvodynia, but not the other way around. I do not have any bladder problems at all, but many women do. I recommend a skin biopsy. The skin biopsy is usually the last procedure before identifying the problem as Vulvodynia. I need to run. We are on the way out the door to a movie. I'll write later.

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Re: I have a question?

Post  Heidi on Sun Jul 24, 2011 2:35 am

I had some intermittent pain symptoms starting at 13, then at 19 I got a yeast infection after antibiotic treatment and it never seemed to go away. I kept getting rawer and more severe pain, tiny little cuts, burning, itching, you name it. I also started to have severe bladder, mouth, rectum and eye symptoms although the VP was the worse. I kept getting diagnosed with yeast, but it wasn't yeast. It took almost 6 years to get the vulvar vestibulitis diagnosis. I later found the Vulvar Pain Foundation and realized that I had every symptom on the list for what they call Vulvar Pain Syndrome. Supposedly, chronic vulvar pain often starts with some stress event like a severe yeast infection or childbirth, but these things don't cause the vp, they just set things in motion for a condition you are already predisposed to have.

I echo Zuzu'z concerns about steriod creams. They can thin and damage the tissue over a long period and cause you to get worse in the long run. Estrace cream was very helpful for me (it's a hormonal cream with estrodial), so it is safe for long-term use. It was discovered as a help when women with VV were being prepped for surgery. They would use the cream for 2-4 weeks pre-surgery to strengthen and thicken the tissue, but the doctors were finding that a lot of women were reporting feeling enough better from the cream that they didn't want to go through with the surgery.
A sitz bath with baking soda helped me when I was really raw. So did using a little spray bottle to rinse after urination instead of toilet paper.

I did pelvic floor treatment briefly, but the PT I was seeing said I had the healthiest, most highly functioning abdomen and pelvic floor muscles she had ever seen and didn't see how I could be suffering as a result of some disfunction or tightening (I was a collegiate and world class athlete, competing in three NCAA championships in taekwondo and qualifying for the US Open before a knee injury ended my athletic career -- and yes, I was suffering from severe VP during this time, but really kicking the %&*# out of a punching or kicking bag or the occasional opponent really lets off the frustration! Of course, I had to laugh a year later when I was diagnosed with fibromyalgia and some doctor told me FM was caused by disuse of the muscles in sedentary people. . .). I did the therapy for a year anyway, but as expected it didn't help me.

In the end the low oxalate diet, eliminating high acid foods, estrace cream and timed calcium citrate are what helped me to actually heal somewhat (about 80% better from my worse). I also had some temporary relief from the anti-yeast/anti-fungal diets. Have you gotten onto the discussion board Trying Low Oxalates at yahoo.com and looked at the most recent, accurate list for oxalate content of foods? Some of the old lists on the internet are out-dated and really misleading and contradictory. The yahoo.group also had ideas for anti-yeast dieters, gluten-free and dairy-free dieters and those monitoring diet for urine pH. Most are on the board for intestinal, urninary, and genital symptoms, many are the parents of autistic children who have genital, urinary and intestinal symptoms. The group helps people with a wide range of conditions but those folks really know their stuff, especially the researcher who moderates the board. It's overwhelming but they might be able to help you too.

Heidi
http://lowoxalatefamily.wordpress.com

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Ok ladies, heres more

Post  grassy on Sun Jul 24, 2011 4:31 pm

So far i havent really done much to myself. I tried OVESTIN Once. I do have a tube. And had a bad reaction. I was kind of disappointed too. SHOOT! Because was hopeful that would help. Once i did a few days of olive oil. Pretty much have left things alone. Heres more i am doing. No dairy, low sugar, low carbs and cut coffee way way back. I even try to stay away from foods containing sulfa. Because it all started with a sulfa anntibiotic reaction. No chemicals soaps anything. I think i have been on the low oxlates group already. I belong to a yahoo V group, a lichen scolorsis group. Figuring if those ladies fix themselves, it'd be a good place to hang out and see what they use. But almost anything i put there just makes things worse. Except that clob. Then i was smart enough to get the ointment, not the cream. which i havent used much of either, because everyone does warn about it thinning.
Maybe i ought to get some calcium citrate. cindy

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Re: I have a question?

Post  Sebby (Admin) on Sun Jul 24, 2011 6:18 pm


As for creams etc I pretty much stopped using anything down there, apart from coconut oil for when I do the biofeedback (for the sensor) thats the only thing I have found non irritating. Vaseline isnt too bad either but a bit too sticky ewwwww lol

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Re: I have a question?

Post  jules on Sun Jul 24, 2011 8:07 pm

I tried ointments in place of creams and they burned just as much. It's great you are trying things that other women have, prior to other interventions. I had to move on to other means. I started Gabepentin a year and a half ago. I later started taking Lyrica along w/ the Gabepentin and now have added Cymbalta to my meds list. I see an acupuncturist and P.T. I think i'm stopping the P.T. because it just aggravates my V. I have been through 5 weeks of acupuncture so far. I may have had some relief this past week. It's so hard to tell because there are other factors that play a part in pain. The best and most help i have received is from a pain clinic my doc referred me to. Obviously, the medical staff there knows how to treat pain. My nurse practitioner is great. I also take Percocet (pain meds) up to three times per day. My condition is way better than it was off medication. I used to have to cool off my vulva at least 6x a day w/ a cool gel pack. i even did it on my breaks in the bathroom at work. I woke up w/ terrible burning pain every morning. i could only sleep because of meds i take...yep, lots of meds! I do get flare ups, but i am able to do pilates/yoga...I can go for walks and work full-time. I can't stress enough the damage those creams/ointments did to my condition. after the use of the creams...my pain got really bad. My doctor told me i could safely use A&D..in the baby section..used for diaper rash. Re: P.T. my walls were not bad at all. The walls typically tighten up because of the pain on the outside. I don't think P.T. is going to help me. Yipee! one less doctor appt. each week. I tell you, these doctor visits can become a full-time job.

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creams and ointments

Post  grassy on Mon Jul 25, 2011 5:00 pm

You know what? i think these creams and ointments are VERY damaging. Now going back to the begginning when this all started on me. Sulfa antibiotic= a bad yeast. That very first doctor gave me Nystatin ointment. I burn today, one year later ,exactly where i used that nystatin!! On me anyways, i have a reaction and get worse with everything. come to the conclusion to not use anything. cindy

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