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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 …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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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!

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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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