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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 …

Comments: 9

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 …

Comments: 1

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 …

Comments: 5

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 …

Comments: 0

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: 4

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 …

Comments: 0


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!

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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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