Log in

I forgot my password

Latest topics
» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


Vulvodynia Sufferer, new to the forum.

View previous topic View next topic Go down

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

pepper7

Posts : 39
Join date : 2012-02-04
Location : UK

View user profile

Back to top Go down

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

mars215

Posts : 23
Join date : 2011-11-10
Location : Philadelphia, PA, USA

View user profile

Back to top Go down

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

pepper7

Posts : 39
Join date : 2012-02-04
Location : UK

View user profile

Back to top Go down

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

mars215

Posts : 23
Join date : 2011-11-10
Location : Philadelphia, PA, USA

View user profile

Back to top Go down

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

Posts : 2
Join date : 2012-02-25

View user profile

Back to top Go down

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
avatar
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

View user profile

Back to top Go down

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

suew

Posts : 2
Join date : 2012-02-27

View user profile

Back to top Go down

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

Posts : 2
Join date : 2012-02-25

View user profile

Back to top Go down

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

suew

Posts : 2
Join date : 2012-02-27

View user profile

Back to top Go down

Re: Vulvodynia Sufferer, new to the forum.

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum