Vulvodynia Support
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» Hope to all my suffering ladies
Vulvodynia and My Life EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvodynia and My Life EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvodynia and My Life EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvodynia and My Life EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulvodynia and My Life EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia and My Life EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia and My Life EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia and My Life EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Vulvodynia and My Life EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Vulvodynia and My Life

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Post  Yangle 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!)
Yangle
Yangle

Posts : 4
Join date : 2011-07-25

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Post  noni 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.

Welcome!!

noni
noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

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Post  Sarah001 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.
Sarah001
Sarah001

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Vulvodynia and My Life Empty Re: Vulvodynia and My Life

Post  Sebby (Admin) 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.
Sebby (Admin)
Sebby (Admin)
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