Vulvodynia Support
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» Hope to all my suffering ladies
i wonder what pain free sex feels like.  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
i wonder what pain free sex feels like.  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
i wonder what pain free sex feels like.  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
i wonder what pain free sex feels like.  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
i wonder what pain free sex feels like.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
i wonder what pain free sex feels like.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
i wonder what pain free sex feels like.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
i wonder what pain free sex feels like.  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!
i wonder what pain free sex feels like.  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


i wonder what pain free sex feels like.

4 posters

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Post  rayster Mon Oct 03, 2011 4:43 pm

Hey
I thought I'd share my story here. I've just joined this website after a little while of feeling down in the dumps about my shitty vagina for the past little while.

A little bit about me: I'm 22 years old, and was diagnosed with vulvodynia (provoked vestibulodynia, vulvar vestibulitis... the darn thing keeps changing names) at age 17, shortly after I first started having sex (and wondering why it was so painful). I literally woke up one day with a nasty yeast infection which I got treated right away (and it went away pretty soon thereafter) however the pain associated with it decided to set up camp and stay long term. I was devastated at first cause my mind immediately jumped to thoughts of things like 'im never going to get married and have kids'. Treatment wise I tried a few things.... I took pregabalin for a while but I hated it and didn't notice any significant improvements, so I stopped that and have been pretty happy not taking it. My GP originally prescribed me a ketamine+amitriptyline mixture in an aqueous base which I used to put on but that didn't take much of the edge off the pain either. Eventually I discovered lidocaine, and it was amazing because it meant I could have sex with the least pain I've ever felt (all be it the lame part of getting into the swing of things and then saying to the boy 'um.... hooooold on I'll brb!' a bit of a mood killer, but I am most definitely not complaining.

Things psychologically only started getting better for me once I had just accepted that this was me, and I would just have to cope with the pain instead of wishing it away and feeling sorry for myself. I've gotten by pretty well with this mentality, and I've met a wonderful boy who is extremely supportive. After my first boyfriend experience I was convinced that every guy I ever met would want sex twice daily from me and If I couldn't put out then that was my own fault - pretty crappy feeling. I have now since been reassured that not every member of the male gender is this way. Smile I've always thought that being a lesbian or becoming a nun would be a pretty good solution to my problems... but alas, not for me. I feel very lucky to have met such a supportive boy, so I don't have to join a convent just yet... hehe.

I know that for me, my pain is related to yeast, after all that's what started the ball rolling in the first place. I feel as if I am constantly riddled with itchy red irritation etc - probably once a month or so. I hate the cannesten cream, cause it burns and makes things worse. Its the most frustrating thing in the world. My pain also flares up and down with my stress levels, fun times.

Recently (and why I'm feeling so down in the dumps and scared out of my mind after being relatively okay for so long) I saw a gyne dr who said that I had a subclinical HPV infection (my heart sank when he told me this - I've only ever had sex with 2 guys, and I don't even like sex for that matter, so why do I deserve this?!), and that this could be a cause for my pain. He offered for me to have the area lasered off. I had a long think about it, and the doctor and I had a discussion about it and we eventually came to the agreement that neither of us were convinced that the hpv was fully to blame for my pain, but why not give it a shot at removing it.

I went through with this, and its been a month since I had the procedure. I am now scared out of my mind - I feel like I am 17 again and I don't know what my future holds. I've been coping so well and now all of a sudden my pain has skyrocketed to a point that I just can't handle, and I don't see an end in sight (the same thoughts I had when I was first diagnosed). I feel really frustrated and scared.

I had a theory in the back of my head that the laser could potentially piss of my nerve endings and anger them... and I think that's what's happened, I just don't know when (or IF for that matter...!) the pain will settle down. I hate not knowing, and I hate feeling like a shitty excuse for a woman because I can't have sex. The pain is so bad right now I nearly passed out putting in a tampon, so... sex is on hold indefinitely. What do I do?!? At least before I could have sex.


I found this website with the hopes that maybe venting a little bit to other women who understand what I'm talking about might make me feel a bit better and lift up my mood a bit. Smile Would be so nice if this was the kinda thing that wasn't so taboo to talk about, seeing as at least recently, its been occupying my thoughts more than its fair share.

I feel silly sometimes going to talk to my GP about not being able to have sex, because sometimes I feel as if its such a comparatively trivial problem - there are far worse things in the world, and some people are riddled with far worse health problems (cancer, neurodegenerative diseases, nasty things like that). I wonder if I'll be taken seriously. I'm also worried whenever I speak to a new doctor that they won't know or heard of what I'm talking about. A couple times in the past my GP appointment has been taken up with me educating them on the topic of vulvodynia and then me leaving being told 'theres no magic cure you know!' (yes thanks, I realise this). Sigh. I don't know what point I'm trying to make here.

Anyways... that's my story! rant over...
-rayster
rayster
rayster

Posts : 7
Join date : 2011-07-02

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Post  Sarah001 Mon Oct 03, 2011 6:50 pm

Hi Rayster and welcome. It's such a shame you had the laser treatment before joining us here as I'd have done alot of trying to persuade you not to, in recent research it's been found to be unhelpful at best, worsening the symptoms at worse but don't think that means you're stuck with the problem. Frst piece of advice is stop using thrush creams! If you get thrush take the oral tablet as the creams irritate things further. Second piece of advice get yourself off to a women's health physio and get them to check your pelvic floor for tightness, I'm willing to bet there's a PF problem after having to have painful sex twice a day when you didn't really want to! Third piece of advice stay calm and practice breathing into your abdomen rather than chest breathing, it helps the pelvic floor. Fourth piece of advice try applying the lidocaine at night before you go to sleep if you don't already, some women improve drastically doing this and at the moment it should help calm down your extra pain. Keep us posted and please get your PF checked!
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 51
Location : UK

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Post  rayster Tue Oct 04, 2011 3:15 pm

Thank you very much for your suggestions - much appreciated!! I will definitely try putting the lidocaine on daily at night, as this isn't something I've been doing. I'm encouraged to hear that it has helped some women improve drastically... Also, i'm curious - what kind of symptoms does PF tightness cause?

I'm just very discouraged (and massively upset) about this extra pain. I feel like there's some scar tissue there and now the skin around the vulva is less stretchy, so now when it is being stretched it hurts a lot more. I kinda knew in the back of my head that the laser would be a (very) bad idea, but I took the risk... arggggg.

It's only been 5 weeks since the procedure, so maybe I just need to be extra patient with healing time. I hope it gets better, and if it does, then sooner rather than later would be nice! I'm not a huge fan of sex, never really have been so it makes it extra difficult for me and my boyfriend cause I don't really like doing any of the other stuff Embarassed , have never really felt all that comfortable with it.

Anyways, thanks again for your suggestions. I'm really glad I found this forum. Very Happy
rayster
rayster

Posts : 7
Join date : 2011-07-02

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Post  Sarah001 Tue Oct 04, 2011 6:39 pm

PF spasm can cause urinary urgency and frequency, back pain, constipation, piles and fissures, inflamed skin in the vulva, feeling like you have a UTI when you test negative for it, hip pain, a feeling of heaviness and fatigue, painful penetration during sex, a tight vaginal opening... the list just goes on. After your laser surgery if you feel tight it might be an idea to try dilators and gradually work up to the larger one, I really do think there's going to be some PF spasm though.
Sarah001
Sarah001

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Post  SimplyBelle Sat Nov 05, 2011 4:31 am

... but what about the anxiety?

Even, if I think about pain-free sex, or if my body was in that position to have pain-free sex, the months of painful sex, painful paps, painful examinations, etcetra, heightens my anxiety about doing anything down there...

SimplyBelle

Posts : 17
Join date : 2011-11-03
Location : British Columbia

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Post  Sarah001 Sat Nov 05, 2011 12:42 pm

Yes anxiety about pain can also affect the PF muscles and make them tense up more in anticipation of pain which is why doctors recommend avoiding sex if it hurts.
Sarah001
Sarah001

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i wonder what pain free sex feels like.  Empty Hi there

Post  Aussie Mon Nov 07, 2011 6:42 am

I thought my issue was yeast also. I was always red raw and irritated after my inital outbreak after my honeymoon. I tried yeast meds oral for 6 months and no change. I tried ami and lyrica each for months, countless creams lotions and potions and I am now happy to say I am feeling much better thanks to herbs and physio. Please read my post on herbs. It may just do the trick. Lidocane burned me too. Oh and stay away from yeast creams. If you must use the oral. A lady that treated me with physio acutally suffered v for 7 years. Hers was related to PF tension and a constant yeast infection. She treated the yeast with long term anti fungals for 6 months - thus I tried the same approach. It worked forh er, not for me. Just goes to show doesnt it how differnt we all are and so many issues within the body can produce the same symptoms.

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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