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

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

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

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

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

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

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

» Help New Diagnosis
Feeling Hopeless 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!
Feeling Hopeless 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  carby148 Mon Feb 04, 2013 6:26 am

First and foremost, I want to say thank you again for having a site like this. I am looking for some support as I don't feel I've had the opportunity to really sit down and talk to anyone about this.

I'm 26, married, no kids of my own. I haven't been formally diagnosed with vulvodynia yet, but by the time I see a gynecologist about it, it will almost be four months that I've struggled with chronic vulva (labia majora) pain and irritation.

I know four months is such a short amount of time compared to the many women who have this, but if this is something I indeed suffer from, the thought of possibly having to live with this for months, years, or my entire life scares me.

Back in early November of 2012 I began feeling a throbbing in my vagina, and since then I've experienced irritation in my urethra and labia majora. In a nutshell, it feels like I will need to urinate and my labia majora feels bruised to the touch. Aside from when I'm not wearing any underwear, I have constant soreness.

What frustrates me most, is in the last three months, I've been to my general practitioner about five times, and although my primary complaint was the pain, these concerns were completely ignored and overshadowed by the fact that I kept getting diagnosed with yeast infections (atypical symptoms, although still very much present despite recurrent treatment).

The pain was attributed to the constant yeast, and despite being on yeast infection medication week after week, the pain never subsided.

I finally called a gynecologist last week, and although they didn't do anything but a swab test again (to see if I had yet another yeast infection), she was the first person to mention vulvodynia as a possible cause.

She told me not to worry, but did prepare me that it may take a few visits to officially diagnose me as they would have to rule out everything else.

She referred me to another gynecologist who knew more about it than her, but I don't have an appointment until the 20th of February.

I'm a little upset she set the appointment so far out, but I guess on the bright side, if they aren't worried to the point of making me an emergency appointment, I guess I can live with it for the next two weeks.

The pain isn't bad enough to take off work, and there are times when I am so used to it that I can't feel it, but I know it's never gone.

It's making me depressed and it has put a wedge in my marriage, at least from my perspective. I've cried a few times over this, just because I never would have thought it would affect me this deeply (emotionally).

I just hope there are people here who can understand, because at times I feel like it's all just in my head...especially when I feel my previous doctor just didn't even listen.

Thanks for letting me share my story!
carby148
carby148

Posts : 17
Join date : 2013-02-04
Age : 37
Location : East Bay Area

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Post  jen007 Mon Feb 04, 2013 2:42 pm

carby148,

Usually a sure fire sign of vulvodynia is constant or chronic yeast infections. I used to have yeast infections all the time for a long time Crying or Very sad . Plus when ever I'd take the medications to clear it up none of them ever worked and even if it did the infect would come back just a few days later. One thing I did was change my under wear to 100% cotton. Cotton is a more breathable material and helps keep the moisture out that would cause yeast to develop. Another thing you could try is changing your soaps with you bathe. I only use fragrance free ivory soap on my area. For my body I still continue to use regular scented soaps. One last thing you could do is ask your doctor to prescribe you 5% lidocaine cream. It temporarily numbs out the areas you put in on. If you do get it be sure to mix it with a little lubricant. Alone the lidocaine can burn until it starts to actually work. When you mix the two it won't burn or make you feel worse.

I completely understand how you feel. I used to feel so alone and in the dark with this. I'd cry all of the time. Plus I had. and still have, a boyfriend since the beginning of this which was hard. We could never be intimate or anything because it was too painful. I had surgery last July to somewhat get rid of my vulvodynia (a vestibulectomy). I only did this as a last resort. I had tried everything to no avail. My pain was all internal so the just cut out my most painful areas and now I don't really have any pain anymore. But you still have a long way to go in this.

Do you have internal pain or is it only external?

Also if you don't think your doctor/ doctors have been properly treating you there is a website you can go to that will help you find specialists in your area. You have to join the group and make a donation, but it's totally worth it. It's called the NVA. They also send you a little news letter every month giving you the latest information on vulvodynia and other related conditions. When they send it it's sent in a discrete package so the information is kept private. I'll link it for you down below if you'd like to check it out.

http://www.nva.org/

Hope this helps!

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  carby148 Mon Feb 04, 2013 5:58 pm

Wow, thank you so much for all that information!

I've tried all the "typical" things the doctors and websites tell you to do...I've always worn cotton underwear, but have ditched wearing daily pantiliners (I get daily discharge, always have since puberty). I switched to cotton leggings (although I find it doesn't do much in terms of pain relief), I eat yogurt every day, I blow dry the area instead of using towels after showers, tried topical over the counter yeast infection medication, diaper rash medication, nothing has helped.

I'm hoping on the 20th they will finally be able to give me some real options as opposed to options that would only cure a yeast infection.

The pain is only external (thank goodness) and is mostly mild. The pain is usually only to the touch, so I do get some relief when I'm able to walk around with no underwear or pants on. But even right now, as I sit here on the couch, I can feel my thighs pressing against my labia majora and it's sore.

Almost how it would feel if you bruised the area, or wore tight pants for too long, or when your pubic hair starts to grow back (I don't know if that's common for everyone, but for me, sometimes it hurts when my hair starts growing back, lol). Oh, and I stopped shaving down there...which I hate...it's like a jungle!
carby148
carby148

Posts : 17
Join date : 2013-02-04
Age : 37
Location : East Bay Area

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Post  jen007 Mon Feb 04, 2013 6:05 pm

I felt the same way for a while. I had no external pain, but I couldn't wait to get home after school everyday to take my pants off...I suffered through my skinny jeans because I love them so much. I started wearing jeggings which helped a little. I always felt tight and a pressure like feeling, plus the yeast. It wasn't a good mix.

My on doctor told me to stop shaving to. She thought that I might have been irritating it too much, but it didn't change anything. She told told me stop wearing tampons and wear pads during my period. I'd also suffer through my period, tampons hurt so bad, but I hated wearing pads. I tried that and the pads actually irritated me more because of the constant rubbing and contact to my skin.

I know one thing that can cause vulvodynia is birth control. Are you on any?

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  carby148 Mon Feb 04, 2013 6:15 pm

No, not on any birth control. My husband doesn't use condoms either. (Long story short, the odds of him getting me pregnant is slim, but if we fell pregnant, we would be happy.)

It's always been painful with sex; as a young teen I was never able to insert tampons. I chalked it up to vaginismus and me being so tiny, but sex has been a difficult thing to bear. We weren't even able to have sex on my wedding night (I was a virgin until then), and it took a while for me to get used to it. Now I am able to have pain free sex, but everything sort of has to align or else that won't happen (I have to be wet enough, he has to be lubricated enough, and it has to be in a particular position). If that doesn't occur, it will be painful during, or it will burn so intensely afterwards I have to just grin and bear it.

I never thought the painful sex was related, but now I'm thinking maybe it is, but the internal vaginal pain is definitely secondary to the vulva pain, especially because I know it's manageable and I'm capable of having pain free sex.
carby148
carby148

Posts : 17
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Age : 37
Location : East Bay Area

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Post  mcclave96 Wed Feb 06, 2013 2:11 pm

When i read your story i think you should talk to your doctor about Physical Therapy....your sex might be causing your labia pain....it is nerves... do some research on physical therapy before seeing you doctor so you are prepared to ask the right questions....i would not use anymore creams...my specialist (who I drove 7 hours to see) suggested using plain vegtable oil....try to relax noticed if you are clenching your body when you stand and walk...If sex is too painful don't do it there are other ways to be intimate....practice breathing....i know it is weird how this is related...Good luck and stay positive it is amazing how much of a difference that has made form...i know it is difficult but try to focus on those times you "forget" about it...I have been thanking God in prayer each time i have a few hours of relief...I noticed my whole attitude is better!!

mcclave96

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