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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

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

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

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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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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Sat Feb 10, 2018 12:18 am by rockylife


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 …

Comments: 4

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.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Vulvodynia and My Life

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Vulvodynia and My Life

Post  Yangle on Mon Jul 25, 2011 12:16 pm

So for me it all started like so many others it seems, a yeast infection. I took some anti-thrush cream and it cleared up the thrush (I stoped getting the discharge) but the pain never went away.

After about 3-4 months of pain I realised that something was wrong so I went to a walk-in Gyne who did all the tests (blood, urine etc..) and found 'mild urinary infection' and reckoned it was probably still thrush. So off I went with some more thrush cream and some antibiotics for the infection. Still no improvement, so went back and was referred to a woman's specialist. Saw them, they referred me onto a consultant. They saw me once and went on maternity leave (all the time between seeing these dr's was a 6 week NHS wait...) they referred me to another hospital to carry on my 'treatment' (at this stage was nothing). That doctor saw me once and referred me onto a dermatological dr at another hospital (still a 6 week NHS waiting times...).

So saw the dermatologist about a year after seeing the first Gyne. They gave me some steroid cream which didn't work. After a couple of months of trying that went back and got referred onto a pain specialist. They saw me (NHS 6 week wait) and said they couldn't help as it was Gyne. So referred me onto the Gyne (6 weeks...). Saw Gyne who gave me Amitriptiline (sp?). Tried this for 6 months to no avail. Just made me moody, and fat. They referred me onto a nerve specialist within Gyne who sent me to have a biopsy (6 weeks...) that happened....and was the most painful thing in my life once the local anaesthetic wore off! Went back, nothing special in it apart from slight eczema. Then... my personal life got completely in the way.

During this 'fun' doctor referral pass the patient game, things were weird with my partner. I was with ... let's call him X. He was supportive on the surface, never pushing to have sex (as I couldn't as it was way to painful to sit down, let alone do anything). But he kept pushing me to try psudoscience (OK point for the record, I have nothing against people who use it. It is shown that the placebo affect can work quite well. However I am a raging Sceptic and don't believe in things unless they have had conclusive double blind trials with large samples..) he would often say, "try this oil" "try this" "try that" and get annoyed when I didn't (or did to please him and it didn't work. I tried the low oxalate diet as well which didn't work. We would argue often about random things and I broke up with him as I couldn't bare the arguing. I never argue! So I was still living in the same house as him (tenancy agreements I couldn't break) when I accidently (I really wasn't looking for it) fell in love with someone (let's call him Y).

This next bit, please don't judge me. Everyone has differing opinions and do things for reasons. Please if you don't agree then don't post anything as It's something I have to live with.
One thing led to another, and we ended up having sex! (which... man was amazing! First time in about 3 years! I guess it was the excitement, adrenaline... and mind over matter as it didn't even hurt... until afterwards) Anyway it was such a last minute thing, a moment of passion that we didn't use protection. (Hell I didn't know I could even have sex!) All this time my ex (X) Was getting angrier and angrier. Life was hell living with him. I spent most my time at Y's.
I found out a month later I was pregnant. I had phoned my sister and asked her what I should do. She said she'd email me as she was at work. So I received her email detailing my options in her opinion. I was staying at Y's that night when I got a call from X saying he needed to talk to me. I went back to X's (where all my belongings were) and he said he knew I was pregnant and got angry. I asked how and he said it was in my email (so he HACKED my emails!!). Then he started shouting and calling me whore (even though this was 8 months after breaking up with him) and then he cornered me and hit me. He punched me in the face to the ground. I screamed and luckily my other housemate was in and came running up and pushed him off me. I grabbed my bag and she took me to the station. I have never been as scared before in my life.

Anyway, to cut a long story short. I took out a loan to pay for the rest of the rent on that house and to rent another at the same time. I had an abortion as me and Y had only been going out a month and whenever I thought about things I would have flashbacks of X hitting me, and my fear. I couldn't face going through with things whilst that was emotionally over me. I was a bit of a wreck to say the least.

I never went back to the doctors about my Vulvodynia as it was the last thing on my mind. Things seem to equal out a bit, my vuldoynia got a bit better, I could have sex once a month and it fell into a cycle of pain which I could deal with (more painful over my period, and either side, lesser so the other week). Little over a year later I went back to my GP (well a new one as I've moved since) and started getting the ball rolling. So here I am. Waiting 8 weeks for an NHS appointment to start the pass the patient fun again. The pain is starting to increase again which is annoying, but not as bad as it was when I was with X. Y is still with me and the best partner a girl could have!

That's my story! ... So far Wink
you know, that felt good getting it all out somewhere. I've never told anyone the whole story (apart from Y who was part of it!)

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Re: Vulvodynia and My Life

Post  noni on Mon Jul 25, 2011 3:16 pm

Hey Girl

Wow...your a really brave and courageous woman, you have been through so much!

I will try to post more later as I have to go to work.



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Re: Vulvodynia and My Life

Post  Sarah001 on Mon Jul 25, 2011 7:06 pm

Hi and welcome, seems like you've been on the NHS "merry go nowhere" like the rest of us UK girls! Funnily enough my partner behaved supportive on the outside at the start and was very calm about no sex for a while but I didn't click until I found out he'd been sleeping with someone else anyway and couldn't give a shit if I could have sex with him or not. We are still sharing a house as we have a joint mortgage on it and he's behaved like a complete prick since January, threatening to break my fingers or push me out of a second floor window etc and finally after 8 months of that he'll be moving out permanently on Thursday this week so I know how hard it is to live with a volatile ex. Don't feel bad about any of your actions, you're just human and we all do what we need to at the time to survive and stay sane.

Onto the V, I didn't get much help from Ami either, Pregabalin has helped a bit but not enough for me to think it's definitely nerve related. I've got Hypermobility Syndrome and Fibro so I'm head to toe trigger points and muscle spasms to compensate for lax ligaments which complicates things alot. My pelvic floor is horrendously tight so I'm pretty sure it's the source of the problem. Have you considered getting your pelvic floor checked out by a women's health physio? It's a good place to start while you wait an eternity for referrals. Rolling Eyes Anyway welcome.

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Re: Vulvodynia and My Life

Post  Sebby (Admin) on Sat Jul 30, 2011 7:37 pm

Welcome to the forum, you certainly have had a lot going on! I'm glad things are going well with Y and that you do find a caring and knowledgeable doctor (even on the nhs!)

Have you looked at the uk Vulval Clinics? There is a link to the website at the top of the Vulvodynia Info category

Also look at getting refered to a women's physio to see if your pelvic floor could be involved in all this

I am currently on pregabalin which helps but is not the whole answer. I am also doing pelvic floor biofeedback from www.vulvodynia.com (Dr Glazer) I found it was helping then had a break after sensor broke, then horrible flare up and am now able to do it again after receiving another sensor (a bit of a rollercoster)

Yes the NHS are bloody irritating with all the long waiting for appointments only to be re-refered Mad dont give up though finding a treatment that works for you

Anyway as far as I am concerned it was the best thing to leave X as he was certainly not supporting you.


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Re: Vulvodynia and My Life

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