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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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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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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.

Comments: 1

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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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


help i have just joined and am looking for any advice or help

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help i have just joined and am looking for any advice or help

Post  jadegreen on Sun Aug 26, 2012 11:25 pm

hi just joined tonight as my daughter, who will be 14 in november and for the past 3 months has had, which i now think could be vulvodynia, she has been treated for thrush by the doc,even though she didnt have the most obvious thrush symptoms. on our 3rd and last visit to date to the doctor we were told dont use the thrush cream anymore and see how you go! my daughter is in agony, she doesnt itch or have lumpy discharge, she has pain after peeing but not pain during peeing, she has a white chalky discharge, which doesnt smell and is in constant pain, she says she isnt sore to touch but her vagina is in agony, she suffers the pain and then all of a sudden it becomes too much for her and she is flat on her back for hours at a time. she has not attended days out with her friends because of this, so i know she must be in pain, doctor hasnt been very helpful i have had to research what might be wrong with her myself and this is the only thing that relates to what she is feeling. any advice or help would be greatly appreciated.

jadegreen

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help i have just joined and am looking for any advice or help

Post  Abi2 on Fri Aug 31, 2012 12:29 pm

Hi - this sounds familiar. I have only just been diagnosed and know that any reply is better than no reply so I thought I'd share with you the little info I have. It must be very scary at 14 to deal with this, it's hard enough at 30! As a child i frequently complained of itching and can remember my mum taking zinc and caster oil everywhere with us and only washing my underware in hot water without detergent. As an adult I have had thrush occasionally and the last time I had it I was given repeated thrush treatment by my GP even though it didn't feel itchy anymore, eventually I went to a GU clinic and they took swabs and urine samples which came back clear. It wasn't thrush that I had it was vulvodynia (a few things I've heard seem to pinpoint thrush treatement as the trigger to vulvodynia). Anyway the first advice the specialist gave me was to wash with Oilatum gel and apply Epaderm ointment a least twice a day and that did help with the localised burning and discomfort. As far as I'm aware you can buy these from chemists but I would demand to see a GU specialist or just walk into a GU clinic and ask for an appointment directly, as my GP still doesn't seem to recognise I have it and even asked me how to spell it because she'd never heard of it. I've had back, lower tummy and leg pain with it so I have now been prescribed tablets (a mild sedative) by the specialist that I'm hoping will help with that. I also try to wear proper shoes with a good sole (probably not what she wants to hear). I never use any other products when I'm washing that area and I take showers instead of baths. As far as I've gathered it's to do with the nerves and pain receptors and how the brain is recieving pain signals, so keeping relaxed eases the pain alot but that's easier said than done. I really hope it gets better for her, if you have any other questions I'm happy to chat.

Abi2

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It still might be yeast

Post  Darkhorse on Sat Sep 01, 2012 9:46 am

I have suffered from yeast (thrush) infections nearly since your daughter's age, and I'm in my mid-40's now, so I have quite a bit of experience with recurring yeast infections. I would say in all these COUNTLESS relapses I've had, perhaps once or twice I've had the classic white, cheesy, lumpy discharge that is characteristic of yeast. I've itched only very, very rarely. Doctors looking for the textbook case of yeast infection easily overlook the patient who has yeast but it's not that obvious.

I also have vulvodynia, but before you jump to this diagnosis (which I believe in my case was partially caused by heavy use of anti-yeast creams), YOU NEED TO TREAT THIS FULLY AS YEAST. Also, did the doctor take a culture? A swab of the discharge should be done and sent to a lab. The labs here in the U.S. usually take a few weeks to grow a culture for yeast. So a doctor just guessing in the dark and leaving your daughter to suffer without treatment could be really overlooking a real infection. You need an actual culture to say, "negative" to know that they didn't find yeast. And even then, many of us who are sensitive to yeast growth can have irritation to very small amounts of yeast that don't show up on a culture, either (which is a normal organism in the body, but for some of us, our bodies react very strongly to it).

I can't use creams anymore because my skin is so sensitive to them, so I take an oral anti-fungal medication. This is what I think your doctor should prescribe for your daughter, because that kills the fungus without using irritating creams, and everywhere in the body (like in the intestines as well). It certainly can't hurt her if it's not the answer, but if it IS yeast, this will give her a chance of being treated more thoroughly. The medication I use is fluconazole, that's the most common for vaginal yeast. I use it a few days because my cases are very stubborn, even though the advertisements say one pill is enough (I wouldn't rely on that). If you use this treatment for a few days and there is no relief, then I'd say it's time to consider other possibilities, but given your description, I think it's highly likely she still has a yeast infection (especially since there IS a discharge that looks abnormal.)

Remember, the symptoms don't have to be that clear-cut for it to be yeast -- I'm living proof that you can have no discharge, no smell, only burning pain and when I take the oral medication, there is sometimes an improvement.

Darkhorse

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Re: help i have just joined and am looking for any advice or help

Post  Newbieadelaide on Fri Sep 14, 2012 1:10 pm

Hi there

I really feel for your daughter. Like the previous poster said thrush can still be present even if the typical symptoms are not there. After treating an infection you can be retested about a month later to see if there is still an infection. You need to allow a month in order to get a more accurate result.

May I suggest that you try and get to a dermatologist? My VV came on after a horrible trush and strep b episode.

On my post I list the recommendations from my dermatologist.

All the best

Newbieadelaide

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Re: help i have just joined and am looking for any advice or help

Post  Loulou on Sat Sep 15, 2012 7:59 pm

Hi jadegreen

My symptoms were exactly like your daughter's when I started with vvd last year. DEFINITELY stop using the thrush cream, i'm convinced it was a major factor in making my pain worse. If she can bear it try not to put anything on down there - the less possibility of something causing further irritation the better.

Given that your daughter's symptoms are so similar to what i experienced, I would encourage you and your daughter to check out another potential cause of her pain - a misaligned pelvis and/or pelvic floor dysfunction.

I was convinced i had thrush, due to the symptoms you've described, even when all the tests came back negative, but, long story short, I found out that my pelvis was misaligned (one side higher than the other and tllted) and that my PF contractions were a little slow to relax. Once I started dealing with this (through chiropractic treatment, yoga and pilates) my symptoms have improved enormously - pain/burning is now minimal (more very slight discomfort than pain), discharge is back to normal, no more pain after peeing and in fact i'm now having some days each month when i feel NORMAL Very Happy

Also, you don't say if she's had a proper test for thrush? If not, do get one. If you're in the uk you can make an appointment at your local Genito-Urinary Medecine (GUM) clinic without a referral from a GP. Also has she been under a lot of stress prior to the onset? If yes, then that's another similarity to my case.

Everyone is different with this horrible condition so i'm not saying my solution will definitely work for your daughter but its another route to explore.

Loulou

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thank you

Post  jadegreen on Mon Jul 01, 2013 11:54 am

hey ladies, thank you all for your comments and im sorry it has taken so long to reply, we have had so much going on, my daughter has sadly been diagnosed now, after seeing a gynaecologist on a few occasions, as suffering from vulvodynia, we are due to pick up a prescription for amytryptyline, so we will collect that today and hopefully they will help Sad 

jadegreen

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Re: help i have just joined and am looking for any advice or help

Post  Alana3 on Mon Jul 01, 2013 1:41 pm

Be careful with that it causes drowsiness like crazy but hopefully it will work for her!

Alana3

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thank you

Post  jadegreen on Tue Jul 02, 2013 11:44 am

thanks Alana I will look out for that, she has got 10mg and she has to take one at night, I felt so sorry for my daughter, doctor kept asking her to explain what her pain felt like, she said I cant describe it:( , I think doctors idea is the tablets will relax her muscles therefore easing her pain, we shall see xx

jadegreen

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Re: help i have just joined and am looking for any advice or help

Post  Kathy100 on Tue Jul 02, 2013 2:36 pm

Hi Jadegreen,

So sorry to hear about your daughter. I was given amitriptyline and it did help stop the burning pain. For me it took a few days to work. It did make me feel very tired and forgetful even on the lowest dose, so the Dr swopped me to notriptyline which is similar but with fewer side effects. If your daughters pain is muscular it would definitely be worth her seeing a pelvic pain physio as that combined with doing stretches at home has really helped me so much so that I'm down to cutting my tablets in half & hope to phase them out soon altogether.

Good luck x

Kathy100

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Re: help i have just joined and am looking for any advice or help

Post  Sarah001 on Tue Jul 02, 2013 5:39 pm

Kathy I'm so pleased for you and of course very jealous too! Laughing 
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Sarah001

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Re: help i have just joined and am looking for any advice or help

Post  jadegreen on Tue Jul 02, 2013 9:45 pm

Kathy, thank you for comments, I will keep an eye on her, I have heard they can make you really tired. I have spoken to 3 different doctors and without sounding bad they really don't seem to know much about this condition. thanks again, I will watch out for any side effects and I will ask at my doctors surgery about a pelvic pain physio too

jadegreen

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Re: help i have just joined and am looking for any advice or help

Post  Alana3 on Wed Jul 03, 2013 11:50 am

Unfortunately moat doctoes dont I had to go to a vulvar pain specialist not easy to find

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Re: help i have just joined and am looking for any advice or help

Post  Kathy100 on Wed Jul 03, 2013 2:03 pm

Hi Sarah,

Thanks very much - it makes difference to feel as if I'm at least making some progress. I'm doing about two hours of stretching everyday - aimed at relaxing pelvis, strengthening back, getting hips back into a neutral position & removing twist forward on my left side - phew! Slowly but surely it seems to be making a difference - the V is still there but nowhere near as bad as it was.

How are you getting on now?

Kathy100

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Re: help i have just joined and am looking for any advice or help

Post  Kathy100 on Wed Jul 03, 2013 2:15 pm

Jadegreen,

I saw at least 6 doctors and a gynae who told me there was nothing wrong (which left me feeling like a freak) before I finally found a doctor who had at least heard of V - I wasn't offered any physio or any other help except for the amitriptyline. I found my physio through the pain consultant I saw. I saw him privately as my doctor wouldn't refer me! So it is difficult & distressing trying to find help but it is out there.

Kathy100

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Re: help i have just joined and am looking for any advice or help

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