Vulvodynia Support
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» Hope to all my suffering ladies
One more for the pot EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
One more for the pot EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
One more for the pot EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
One more for the pot EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
One more for the pot EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
One more for the pot EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
One more for the pot EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
One more for the pot 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!
One more for the pot 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


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Post  ves Mon Mar 21, 2011 2:03 am

Hi there,

Seems there's a new one joining every day now so thought I would take the plunge and say hi. It will be nice to talk to others with similar issues....

So, I'm 27, live in London, and was diagnosed with what was then called vestibulitis when I was 17. So far 10 years and no change despite every treatment under the sun- canesten (even though no thrush, thanks doctor)hormone gels, emollients, cortisone etc. Funnily enough when I was on the umpteenth visito to a new gyno years ago for this, she didn't have anything to add about the vestiublodynia, but discovered I has PCOS which was useful I suppose! One thing I haven't tried is any PT, any kind of biofeedback, dilators etc- reason being that I haven't so far felt I needed them or that my pelvic floor is particularly screwed up. However I may need to rethink that (see below!)

I know the research is still pretty patchy, although I would assume that I have the primary or congenital version, as my pain was not precipitated by any type of infection as far as I can remember, although I do remember it beginning quite suddenly when I would feel burning after peeing for about 5 minutes, which is what first took me to the doctor. Thankfully that seems to have gone now but the essential symptoms (red and raw, basically) have never fluctuated regardless as far as I can tell of medication, cycle or anything else! I was put on amitryptylene (can't remember how to spell it) which sent me to cloud 9 for about 2 months after starting it before I got used to it. That was nice as I was incredibly happy, however it didn't actually help the pain !Laughing . Since then I've stopped it as the side effects (dry mouth, wooziness) got to me after a few years.

I was offered lignocaine 5% as well which is pretty great, I don't find the burning associated with it disturbing thankfully as I know some do and I don't have a reaction to it. my complaint is that it's not strong enough, if it really knocked the nerve endings on the head properly, it would vastly improve my sex life! I assume it's not produced in greater strength as that presumably wouldn't be too good for you if used regularly, sigh.

Anyway, my last relationship was ok thankfully, it didn't hurt too much and I applied lignocaine when it did. However I had a fairly horrific experience the other day- have just started dating again, finally got down to it, and um.... it turns out I can't really deal so well with anyone much er, larger, than my ex. In the end we just had to stop which was pretty embarrasing as you don't want to have to go into your gynecological history with a guy you haven't been with all that long, it's not the greatest pillow talk after let alone if you can't finish the act! I hadn't used lignocaine as I hadn't thought I'd need it but clearly I need to rethink that.

Anyway, I try not to get too despondent as I guess there's no point really, but as I know you'll all understand, this does get very frustrating at times and so I look forward to talking to everyone on here and hopefully having a look through and getting some tips.

Surgery does seem tempting at times, but then I read the horror stories!


Anyway, hello...

ves

Posts : 11
Join date : 2011-03-21

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Post  noni Mon Mar 21, 2011 2:19 am

Hey!

Welcome!!!

I would love to write more but I am super tired!Its late in this part of the globe!

Take care,
noni
noni
noni

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

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Post  ves Tue Mar 22, 2011 11:46 am

thanks Noni Smile

ves

Posts : 11
Join date : 2011-03-21

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Post  Sebby (Admin) Tue Mar 22, 2011 8:00 pm


Hi ves and welcome to the forum

I have VVS since 13 when I first tried tampons and sex has always hurt to some degree.

I am currently trying the pelvic floor biofeedback option. I am using the home training kit from Dr Glazer's site Vulvodynia.com. It will be many months before I notice any improvement although unfortunatly I have developed an allergy to the electrode I place under my belly button! Thankfully im ok with the vaginal sensor.

I am also on Pregabalin and have noticed a small reduction in pain and shorter flare ups. I have been on 300mg for about 5 weeks. Dr said it could take up to 2 months to see the full effect

I have asked to be reffered to Whips Cross hospital as they have a dermo vulval clinic and am still awaiting the appointment

I deff think its worth giving the whole Pelvic Floor thing a go.

I have been told I need to start dating again (been single for 2years) by Dr Glazer and to regain my sexual self lol If there is a sexual self left lol

I would tell anyone I was serious about dating regularly about the V from the outset. I would also not rush into intercourse but learn to enjoy other aspects of sex again.

Its a scarey thought and one that I have not yet ventured into yet as I really dont know where to start! Good luck with your treatment and keep us updated also good luck with the dating Smile

P.S. read my video consultation with dr glazer post. It tells you what he said about the pelvic floor and sex and dating
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
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Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  ves Tue Mar 22, 2011 10:17 pm

Thanks Sebby,

I will def have a look at the video consultation thread- interesting about Whipps Cross as well I didn't know about them! I think, yeah, I do need to bite the bullet and have a look at my pelvic floor. I think I've just been avoiding it because my general reaction to all this is hoping that if I ignore it it will go away or I somehow won't notice it, which is not very sensible really. I think it's because I just kind of resent its presence in my life so much I kind of want to show it what's what by just ignoring it (which I know is kind of childish and also clearly bonkers... Rolling Eyes )

Anyway I will definitely have to go about the dating thing differently if last time was anything to go by, and yes will keep you posted!

Anyway I'm off to read the rest of the board so I can 'meet' everyone.

God this is just such a stupid condition, you know? And it's not like walking around with a sprained wrist where everyone asks if your wrist is hurting and is careful of you and sympathetic. You can't just sit down with a group of strangers at a meeting, say, and say 'wow, my vagina really hurts today' and have everyone nod in sympathy! I think it's that aspect of it that annoys me most (which is why I'm glad I found this place!)

ves

Posts : 11
Join date : 2011-03-21

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Post  Mouse Wed Mar 23, 2011 9:20 pm

Hey there and welcome!

Definitely give the physio a go, it's just nice to know what's happening down there. Physio has worked wonders for me =)

Maybe also acknowledge the bastard and attack it head on! There are some great resources for sex without penetration also.

It's awkward having a chronic pain condition of this nature. It does help to talk though, have you got a therapist? Most of us do, it's a crazy and frustrating condition, unloading all the frustration helps a lot. You could say to people you have pelvic pain, only the nosey or very stupid would ask further questions.

We are on FB if you would like to join, it's private and doesn't post to your wall. Sebby can hook you up with that.

So a huge welcome. I hope you find some helpful information. We're all doing the same thing every day and some of us are making great progress!

Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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Post  naomi Thu Mar 24, 2011 11:27 am

hello! welcome to the forum!

these girls are a bunch of nutters...but lovely nutters at that Smile

Nai xxxx
naomi
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Post  Sebby (Admin) Sat Mar 26, 2011 6:05 pm


Yep it frustrates me too that I cant just come out and say "oh my vulvar really hurts today" like you can with other areas of the body but I do wonder if men with willy conditions feel the same? Im guessing they do...Hmmm wonder if there is a willy condition forum? lol

I've got my dermo appt through from Whips Cross, not till May but I did ask to be seen by the top consultant so I guess it would be a wait. I will let you know how it goes.

Sebby (Admin)
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