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

» Please tell me this can get better
Help please EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Help please EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Help please EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Help please EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Help please EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Help please EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Help please 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!
Help please 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


Help please

3 posters

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Help please Empty Help please

Post  phronesis Sun Nov 05, 2017 6:12 am

I'm truly going insane.
I started living this hell the month of March this year. Everything was more or less ok-ish (I was suffering from a huge depression at that time, but I was feeling a lot better). I had sex and from then on everything went straight downhill.
I started feeling weird, like if my vagina was burning. It was something truly horrible, but I guess if you're here reading this you already know. I went to the hospital and the doctor that saw me there gave me this kinda pills that you gotta put down there for seven days; you know, to set the pH alright and restore the "normal state" that vaginas are supposed to have, idk how to say all this stuff English isn't my main language but this is how desperate I am.
Those thingies didn't do too much, I felt sorta relieved because I think they got some kind of painkiller in them but that was it.
I run one of these tests where they take like a sample from your vagina (is it called vaginal culture???) to see if I had some sort of bacteria or fungi. Nothing alike, all results were negative.
I went back to the hospital, the same doctor saw me again. This time she thought it might be herpes, so she gave me new pills (this time like, the ones you take orally or whatever it is called I'm so sorry). I took the pills and once again the symptoms sort of faded.
At the same time I was seeing my gynecologist, I explained her what I felt but she sorta dismissed my words telling that if I was already taking pills (whether it was the ones for the pH or the ones for the herpes) there was nothing she could do.
Several months passed after that, I didn't enjoy them fully because of these annoying sensations I felt down there, however they usually weren't /that/ bad so I managed. Peeing was no fun at all, every night I felt uncomfortable; idk if this happens to you all but I've read that it's quite common that you wake up feeling alright and it gets worse through the day? But I could tolerate it, somehow.
The thing is, the past few weeks (like, the past 5/6 weeks? idk) it's been true hell. It's become unbearable. It's like something is burning down there and I'm truly going insane. I went back to the hospital, a new doctor saw me there and gave me some medication to kill bacteria and another one to kill fungi. Nothing happened, as you might have noticed. I went to the gynecologist again and after explaining my symptoms she concluded that it's all in my head. I'm running lots of tests right now -blood, vaginal culture, urinalysis- but I already know they all will probably be negative 'cause they already did back then! This lady said that if all of them (and the pap that i'll get done later) are negative, then it's all in my head and i'll just have to talk about it with my therapist until it heals by itself somehow.
Incapable of accepting this, I searched for my symptoms on the internet until I found this. "Vulvodynia". At first I was happy; how could I not be? What I had, had an actual name! It wasn't just me! But the more I read about this disease, the more desperate I get. I guess you understand why: nobody really knows why it happens, there isn't a 100% effective method to get rid of it, even if you do it might come back again. Most doctors ignore that this disease even exists, and idk on your country but I'm from Argentina and here doctors usually get really upset when you tell them about something you've read on the internet because "they've studied and you haven't" so to them you basically dont know shit. I will tell my gynecologist about this when I see her again, but I'm 99% sure that she won't give a shit nor offer my no solutions of any kind. I'm already using jelly lidocaine 2% and most of the time it doesn't do nothing, only if I lay on my bed covered and watch something to distract myself (the only method I've discovered that calms my symptoms since this whole hell started).

I'm truly, truly going crazy. It's so frustrating because I was just starting to enjoy life (you know, after dealing with depression and after my psychiatrist decided I could stop taking antidepressants), and now I want to die all over again. I'm crying every night because of this, I just can't deal with it anymore. I'm having exams in two weeks and I don't know what to do anymore because when the pain starts I can't concentrate nor even sit down (and please don't tell me this has something to do with stress because I already had exams like a month and a half ago and everything was more or less fine, I wasn't suffering like I am now, it's not that). I don't want to suffer from this forever. I don't want to deal with this anymore. I want it to be over as soon as possible, I don't care what it takes. I can't even go out nor see my friends because I'm always feeling uncomfortable. I just need this to stop so I can actually live again. I've just had mi 21st birthday, I've got so much to live and this hell of a disease is restraining me from doing it. Please someone help me. I'm begging here.

phronesis

Posts : 1
Join date : 2017-11-05

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Post  fairlight10 Mon Nov 06, 2017 5:44 pm

Hi phronesis. Sorry to hear you also have this horrible condition. It is not in your head. It is real pain in your vulvar. Possibly neuropathic. I have been diagnosed with vulvar vestibulitis more than 5 years ago. Went to different doctors and told I had thrush, then atrophic vaginitis. The medications for these conditions made the pain worse. Found a gynaecologist who told me I had vulvodynia. Which just translates to pain in the vulvar. He prescribed a low dose of the antidepressant Nortriptyline 20mgs. This has worked for me and given me my life back.I was off work for 3months until I felt comfortable enough to function in the workplace. I also had acupuncture. Do not understate your feelings and emotions they definatly have an impact on this condition. Go back to your doctor and tell him about this condition and if need be tell him/her about this forum. Understate should read underestimate. You have found this forum, read as many as you can.I did not find it at the beginning and I wish I had. Good luck and know you are not alone.

fairlight10

Posts : 72
Join date : 2016-04-17

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Post  EverythingIsDifferentNow Wed Mar 21, 2018 5:19 am

check my posts.

EverythingIsDifferentNow

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Join date : 2014-09-13

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