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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 …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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: 1

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: 6

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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