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» 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
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» Hello. In Need of Advice, Please and Thank You. Long Read.
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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 …

Comments: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


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 …

Comments: 0

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


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 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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