Vulvodynia Support
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» Hope to all my suffering ladies
Thanks for this forum - I am desperate. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Thanks for this forum - I am desperate. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Thanks for this forum - I am desperate. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Thanks for this forum - I am desperate. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Thanks for this forum - I am desperate. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Thanks for this forum - I am desperate. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Thanks for this forum - I am desperate. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Thanks for this forum - I am desperate. 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!
Thanks for this forum - I am desperate. 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


Thanks for this forum - I am desperate.

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Post  kell Fri May 13, 2016 6:04 pm

Hi, I'm 60 and have had painful sex for several years - its to the point where we don't even have sex...  and that sucks. Plus I understand that not 'using it'  means I am 'losing it'...  which also sucks.

I'm worried for my marriage - and I really want to have decent sex again - (decent is fine, wouldn't I love Hugely Satisfying Orgasmic Sex again - yes, but right now just fairly pain-free is fine).  I hope to hear of some interesting and helpful things from you ladies.

Basically,it appears to me my most painful part is right at the opening of the vagina - once we blast through that it doesn't "seem" like the rest of the way is that painful, but the pain from the opening is so constant during the event that it is hard to tell and very, very hard to concentrate on anything pleasurable.  It's awful.  I love my husband so much and he loves me but this is starting to create a wall between us.  Sad and depressing - never felt old in my life but now I do.

In the past I've used Replens, Astroglide, KY and Estring.... Estring was starting to work fairly well but then I had two incidences where it attached itself to my cervix -- the last time I could NOT get it out and the dear husband had to GET IT.  Tell me that wasn't horrible and embarrassing.  So not fair.  So I was done with that.

I just ordered Carlson's Key-E capsules and some YES lubricant in hopes to get things going again... I hope it's not too late.  I was also thinking of rubbing some organic coconut oil on the opening area til the products arrive.  Has anyone tried these things??

I have also gotten a compounded estrogen prescription with some progesterone pills, I believe - but balked when she said it was like $150 for the script!! (over $300 without the insurance! HIghway robbery!!) so i didn't try that. I left so discouraged.

Anyway, that's pretty much it.  I'm glad to have at least found a place where I can see others have similar situations, and that actually helps a little.

kell

Posts : 8
Join date : 2016-05-13

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Post  PainBlogger Fri May 13, 2016 6:34 pm

I've been using Yes lubricant for my physio exercises. I've not had any irritation from it. I did try coconut oil and it stung a bit but that was a while ago when my symptoms were worse, so maybe it would be ok now. Whatever you try, try on a small area first and wait to check for any bad reaction before using more.

Trying to continue despite the pain can cause the pelvic floor muscles to tighten up and in turn exacerbate the pain. Do you have access to a physiotherapist/PT specialising in pelvic pain that your doctor could refer you to?

PainBlogger

Posts : 219
Join date : 2015-07-27

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Post  kell Fri May 13, 2016 6:42 pm

Thanks PainBlogger for your response! I don't know about the physiotherapist - I've never even heard of it in reference to this so maybe it will be something I'll check out. It's so weird, I've suffered with this for so long, tried some things w/ varying success - yet I'd go online and find very little real or helpful information on anything!

Today I just got immersed in it all (found the terms vestibule, vulvodynia etc. for first time) - and was looking specifically for a current, used forum where women discussed this - so happy to have found this one.

kell

Posts : 8
Join date : 2016-05-13

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Post  emalita Fri May 13, 2016 7:57 pm

I've used YES lubricant and coconut oil in the past. Unfortunately I've had a reaction to both (e.g. stinging, burning, etc.). However, prior to this whole mess starting for me, I had used both with no pain. My skin is extremely sensitive and it tends to react to mostly everything nowadays.

If your issue is more pain and less skin sensitivity, then I think you will be fine with either. I personally think coconut oil would be more gentle simply because the YES waterbased lubricant has citric acid in it, but when I was able to have sex a LONG time ago, coconut oil was a no no because my fiancé and I used condoms.

I absolutely agree with PainBlogger. Do some research on pelvic floor physical therapy, and see if that sounds like it may help your issue.

Good luck!

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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