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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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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 …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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Vulvodynia Sufferer, new to the forum.

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Vulvodynia Sufferer, new to the forum.

Post  pepper7 on Sat Feb 04, 2012 2:25 pm

Hi all,

Ok so here is my story. I had been getting chronic yeast infections since I was around 12, being a shy 12 year old I was way too embarrassed to tell even my mum so I would suffer in silence-finally I got my mum to buy me canestene which would offer short term relief then the yeast infection would come back. I did start seeing my doctor and was always diagnosed with thrush.
In uni I finally had some tests done which came back negative for thrush but I was still getting the itch so I assumed they must be wrong and continued using canestene. Iv pretty much used some type of cream on my Foof every day since I was 12 Sad
Anyway I got used to it in a way and just decided I would never get to be one of those sexually active, normal girls.
Iv also used panty liners every day since I was 12 which Im sure doesnt help.
Anyway last year when I was 26 I fooled around with a guy Id known for years (things were ok foof wise so I took a chance) we didnt have sex but did fool around (for the record I have never had sex not for lack of offers just because its too painful and Im scared that I would be laughed at for telling guys Im a virgin at 27-this is the only area of my life that I lack confidence in) after that the pain, itching, burning seemed to be worse so I convinced myself I had caught herpes, chlamydia, gonorrhoea, HPV you name it I convinced myself I got it. I went the doctor and was diagnosed with thrush Again and then I cracked. I booked myself into a sexual health clinic and saw a doctor who diagnosed vaginal eczema and gave me some treatments-they didnt work so I went back and was referred me to a specialist in the clinic called Doctor Rudy.

He was a godsend, he sat with me for 1 and 1/2 hours listening to my story he did the cotton bud test and told me I was a classic case of Vulvodynia. It was a relief to have a diagnosis but its still the start of a battle.
Now it seems to come and go I can have a few weeks of no pain and its amazing I feel almost normal but then Ill get my period and I always have a bad week or two after my period. So bad that I was still convinced I had an STD so after a month or so I went back to the original sexual health clinic doctor and burst ino tears in her office and begged to be tested for everything, she examined me and took samples and all came back negative-again she was lovely and assured me I didnt have an STD or Herpes (which is my biggest fear) and it was Vulvodynia.
So here I am, Im having a very bad couple of weeks and needed to talk and saw this forum and was hoping to meet other people in similar circumstances and gain some knowledge, remedies etc. And get some questions answered/answer some questions.


Does anyone else have 'cyclical' pain? Mine is always worse after my period and I seem to have one patch where the pain and burning is worse-Dr Rudy called it localised (I think thats the right term)
He has told me that there are some treatments including anti-depressents, has anyone tried this? or Seeing a nuerologist? He said that because my vaginal nerves are used to being itchy and in pain the nerves are confused as to how they should react.
Also to be careful regarding what I use washing wise-soaps etc and be careful with washing my clothes in certain washing powders...

Right well I think I have said enough-I have a tendency to waffle so just call me out on it.
Thanks for reading.
Pepper7

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Re: Vulvodynia Sufferer, new to the forum.

Post  mars215 on Fri Feb 10, 2012 4:32 pm

Hi Pepper7,

I'm really sorry you're going through so much pain. I just wanted to offer a couple of things that have helped me a bit. I also have localized/provoked VV... I usually feel more pain before my period, where my cramps are really intense and the pain down there is non-stop... I haven't seen a neurologist, but I do see a physical therapist, urologist and a therapist... anxiety/stress is a huge trigger for my VV so I think finding ways to cope and release your feelings can be important. it can be so natural to get into an emotional rollercoaster with this illness, then having those emotions affect the symptoms =/

Anyways, some things I've done is to switch soaps like you mentioned... i only use Dove sensitive skin...also i switched laundry detergents to natural or sensitive skin ones with no perfumes or dyes... i also only wash my undies all together (i don't mix them with other clothes)... and i only wear cotton undies...

hope this helps!
mars

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Re: Vulvodynia Sufferer, new to the forum.

Post  pepper7 on Tue Feb 14, 2012 10:35 pm

Hi Mars,

Thank you so much for replying and for the advice! I saw another doctor the other day for a referral (I had a bunch of names and places) and as fate would have it she had previously worked with a gyneacolgical (sp) therapist who specialises in vaginal/vulval problems. So she is getting me a referral to her. She's put me on a months worth of Amitryptaline to be taken at night

However and you cam call me crazy but I haven avoided sugar for over a week now and the difference in pain is unreal! I feel almost normal.

What washing powder brands did you switch to?

Thanks again Very Happy
Pepper x

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Re: Vulvodynia Sufferer, new to the forum.

Post  mars215 on Fri Feb 17, 2012 5:43 pm

Hi Pepper!

I'm so glad to hear about your referral, and how you've been feeling less pain =D That is awesome. I noticed a similar effect when I stopped using artificial sugars like Splenda. I switched from "light yogurt" to organic baby yogurt because I found many of them had artificial sugars.

I'm not sure what's available to you in your area (I'm in the US)... but I've tried Arm and Hammer, Tide, and ALL's sensitive skin detergent, and they have worked well for me. One option would be to try a small bottle of sensitive skin or organic detergent on just undies... and use your regular stuff on the other clothes. Just a thought Smile

Good luck with the appointment!!

Mars

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In hopes of getting an official diagnosis...

Post  k_twigg on Sat Feb 25, 2012 6:44 pm

Hi everyone,

My story started in August of 2011, when I started birth control pills. I got a yeast infection, and was able to treat it over the counter with just Monistat. I got a second yeast infection a few weeks after that, and had to go to the walk-in clinic for a Diflucan. I didn't think much of the infections until I got the third one and realized there is probably a problem. After three or four yeast infections I got bacterial vaginosis. Since then, I have never been fully cured of my pain. After the case of BV I got two more yeast infections, still not feeling relief from pain. My cultures continuously coming back negative, and my doctor always scratching his head. I saw my gynecologist's Nurse Practitioner twice now, and both times she gave me a steroid cream to use for my excess burning, itching, redness and swelling. The first time I used it I got BV again, and the antibiotic got rid of the infection, but I still am having pain and discomfort. I've actually stopped using the steroid cream all together this time after realizing it doesn't do anything for me. After I stopped using the cream the first time (before I got BV again), I got such a bad flair up I was taking Ibuprofen to control the pain. It was painful wearing any kind of pants at all. I was soak in a luke warm tub for 30-40 minutes a night, and sleep without pants to try and get some sort of relief.

I've been tested for every STD known to man. I've had blood work done twice, once to check for diabetes, and most recently for HIV. All came back normal. I honestly think that the test for HIV was in desperation of not knowing what else to do for me.

I am kind of at my witt's end at this point. I cry almost nightly. I've had a boyfriend for 15 months now who has been by my side from the beginning. Our sex life is pretty much gone now, but it has truly shown our strong our relationship really is over the last 6-7 months. I have not officially been diagnosed with Vulvodynia, but I really and truly don't know what else it could be. I have joined this board to hopefully get some advice, and perhaps some insight and suggestions. How do I get officially diagnosed?

k_twigg

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Re: Vulvodynia Sufferer, new to the forum.

Post  ButterflyLiz on Mon Feb 27, 2012 6:46 pm

Hi K_twigg, welcome to the forum.

I’m sorry to hear about all you’ve been through. There does seem to be a link between vulvodynia & recurring thrush infections. In a recent study, mice who were given 3 consecutive yeast infections went on to develop vulvodynia symptoms, even once the infections had disappeared. This doesn’t provide us with a solution because they don’t know why it happens (the skin or nerves are somehow changed by the infections), but at least some research is finally being done.

I think that recurring thrush has played a big part in my pain, too, though I think I also have other factors. For the yeast issue, I’m currently cutting out all sugar from my diet. I did this once before and it seemed to help. I also wear special underwear which has an antimicrobial in, which kills yeast & prevents it from growing (http://dermasilk-intimo.co.uk/). The material was originally designed for eczema patients so it’s very soothing. My reasoning is that even when I am not actually in the middle of a yeast infection, it’s almost like the yeast never quite goes away, it is always there at a low level which is why it’s so easy for me to get infections. This is just a gut feeling, though and isn’t backed up by anything.

It definitely sounds to me like you have vulvodynia. I know it’s frustrating but you have to keep going back to your doctors until they can give you some kind of help or refer you on to someone who can. If you’re anywhere near London I can tell you who I see. Not enough doctors know about this condition, we normally end up educating them. Take them in some printouts from websites and see if that helps (try http://www.vulvalpainsociety.org/vps/). Once you find someone who knows what they’re talking about you can start trying things that might help you, so don’t give up hope. Personally I’m on pregabalin which helps nerve pain, and that has helped to keep my pain under control.

Wishing you all the best x
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Re: Vulvodynia Sufferer, new to the forum.

Post  suew on Mon Feb 27, 2012 8:16 pm

Hi K_twigg, your story sounds very like my own except mine started with cystitis followed by thrush caused by the antibiotics. I am now under the care of a specialist who is still trying to find the right solution for me. She has told me that my pain is caused by damage to the nerve endings following the thrush infection,(it was very bad!) and describes it as similar to shingles where the nerve endings are also damaged and the pain persists long after the condition has gone. She assures me that eventually a combination of treatments suitable for me will be found and actually,I do now have periods of relief though nothing permanent yet. If you havn't already seen a specialist you should ask for a referral from your G.P. and then I think it's just a matter of persevering untill something works. My pain is always much worse at night and I found that applying a plastic bag full of ice cubes down there gave me enormous relief. Hope you get there.
suew

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Re: Vulvodynia Sufferer, new to the forum.

Post  k_twigg on Tue Feb 28, 2012 1:00 pm

Thanks for your advice and comfort, ladies (suew and ButterflyLiz). I am actually located in the United States. I've researched a Vulva Clinic around where I live, but it's about 2 hours away. It's likely I'll have to make the treck and go. They specialize in the diagnosis and treatment of Vulvodynia. I'm really hoping that will finally give me some relief. I don't know how much longer I can live with this. I feel like I'm going to become depressed sooner than later and have to be on medication for that or something. It's just comforting to know that I'm not alone, and there are other people in my situation. These forums have helped me a TON!

Thanks again for your support, everyone!

k_twigg

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Re: Vulvodynia Sufferer, new to the forum.

Post  suew on Wed Feb 29, 2012 8:21 pm

Hi again, a 2 hour trek to find someone who can help sounds horrendous! The specialist I see is actually a dermatologist and apparently some of them specialise in this problem. Would this be an option for you perhaps a bit nearer home? Your GP will probably be able to point you in the right direction.Try not to let this dominate your life (easy to say, I know! A bit like trying to ignore toothache), but I do find that when I'm absorbed in something the discomfort tends to take a back seat. I think once you find someone to investigate this for you you will feel better, I know I did. Take care.
Suew

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Re: Vulvodynia Sufferer, new to the forum.

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