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    » 7 months since the diagnosis
    Does anyone have this issue? EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Does anyone have this issue? EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Does anyone have this issue? EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Does anyone have this issue? 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!
    Does anyone have this issue? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    Does anyone have this issue? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    Does anyone have this issue? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    Does anyone have this issue? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    Does anyone have this issue? EmptyMon Apr 08, 2019 7:54 am by Jo44

    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


    Does anyone have this issue?

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    Does anyone have this issue? Empty Does anyone have this issue?

    Post  time2reclaim on Tue Apr 01, 2014 3:17 am

    My pain is pretty much external and is stronger in the vestibule. My biggest problem seems to be that the external area does not have normal moisture. About 8 days after my period I do get more of the slicker moisture and for that short time the pain stops but then it begins again.

    My pain used to be the entire external, the opening and part of the vagina near the opening. I was using an estrogen for a short time and it at least helped the vaginal pain to improve.

    OH and I also seem to have a toilet paper allergy issue now as I get red, inflamed and swollen if I use it. This is pretty miserable. I'm not sure what else to use.

    Does anyone else seem to have this dryness issue?


    Last edited by time2reclaim on Fri Dec 26, 2014 12:46 am; edited 1 time in total

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    Post  lonelyone48 on Tue Apr 01, 2014 9:48 am

    Hi time2reclaim. Yes I have dryness and was told I was menopausal. It definitely makes vulvodynia worse. I cannot take estrogen so I use KY Jelly.

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    Post  Sunflower82 on Tue Apr 01, 2014 5:53 pm

    Hi,
    It maybe worth trying an oil/water based natural lube which doubles up as a moisturiser a good brand that hasn't caused me irritation is called yes! It's a natural product and doesn't contain any horrible chemicals !


    Kt

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    Does anyone have this issue? Empty lubricant

    Post  time2reclaim on Tue Apr 01, 2014 10:44 pm

    I've been using emu oil and it helps a lot but still doesn't cut the pain

    time2reclaim

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    Does anyone have this issue? Empty TP

    Post  nanmark3 on Thu Apr 10, 2014 11:03 pm

    Hello, the only toilette paper I can use on a regular basis is Charmin Ultra Soft and the oil I use for that painful dryness is organic cold-pressed coconut oil. It's very soothing and doesn't stain things. I hope this helps. Nancy

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    Does anyone have this issue? Empty Where can you buy organic cold-pressed coconut oil,please?

    Post  kks224 on Mon Jun 23, 2014 3:03 am

    nanmark3 wrote:Hello, the only toilette paper I can use on a regular basis is Charmin Ultra Soft and the oil I use for that painful dryness is organic cold-pressed coconut oil.  It's very soothing and doesn't stain things.  I hope this helps.  Nancy

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    Post  kristinewarning@yahoo.com on Sat Aug 02, 2014 3:14 pm

    I have the issue with moisture and I am starting menopause. Every doctor I have seen told me "it may sound crazy", but use Crisco oil - yes, the same thick, white lard-looking stuff you would fry chicken in. It's cheap and a can could last for an awful long time. I finally bought some and it works!

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    Post  time2reclaim on Fri Dec 26, 2014 1:10 am

    kristinewarning@yahoo.com wrote:I have the issue with moisture and I am starting menopause.  Every doctor I have seen told me "it may sound crazy", but use Crisco oil - yes, the same thick, white lard-looking stuff you would fry chicken in.  It's cheap and a can could last for an awful long time.  I finally bought some and it works!

    I have heard to try Crisco before but haven't yet. Have you had no issues with any sort of vaginal infections if you have sex and are using it? I am so afraid of having to use any meds again on the girly parts.

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    Post  meelie on Mon Dec 29, 2014 12:14 am

    I use a completely natural organic moisturizer called Yes. It is wonderful. It's on amazon but I order it from GB.

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    Post  time2reclaim on Mon Dec 29, 2014 12:52 am

    meelie wrote:I use a completely natural organic moisturizer called Yes. It is wonderful. It's on amazon but I order it from GB.

    Do you use the water or oil based product?

    I found the ingredients interesting in the water based. There is flax extract which I don't know if it has any hormonal effect as an ointment on the genitalia, I do know there is a possibility of flax being similar to estrogens.

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    Post  meelie on Mon Dec 29, 2014 2:39 am

    I use the water based. I have tried the oil based for those rare sex moments but I still like the water best.

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    Post  meelie on Mon Dec 29, 2014 2:44 am

    I've never read anything about flax having a hormonal effect on anything. I know it is a great anti inflammatory and other things. I give it to my horse for COPD and arthritis. Seems to help so far.

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    Post  Sparkle on Tue Dec 30, 2014 9:22 pm

    The best lube to use is yes water based lube it's non irritant. And most the girls with the horrible condition use it. It's not cheap but I promise u it won't irritate. You can buy it at Amazon online. I always use it

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    Post  kell on Wed Jun 15, 2016 1:45 am

    Can you use the Yes as a moisturizer for inside as opposed to a lube for pre-sex?  I thought I'd read somewhere you could use it either way and it was helpful for dryness.

    Also, I recently saw in Hannafords something I thought was interesting -- it was I think, Organic -- Coconut Oil Crisco...  I made a mental check in my head to remember this if I ever needed it.  Currently I melt my coconut oil and apply it externally/internally a bit.  I think it has helped.

    I've also made a switch on tp - no perfumes etc...  also washing undies in washer, either with no soap or I've tried a new natural type soap, its called: Molly's Suds...?   link:mollys suds

    Has anyone heard of that or think it might be ok?
    I also have bought a menopausal vitamin that has black cohosh, Dong quai, wild yams, clover, sage, soy, vitex in it.

    I also bought the Key E inserts, which are interesting to say the least -- I think they are good, my big thing is to get the nerve up to approach about having sex at some point soon and see if anything has helped.  Even a little would be good.  I was into my routine of my "therapies" as I call them and then we went camping for 5 days so I wasn't able to do anything then, so now I need to build up my applications and then my courage again...

    Sorry to go on here on this thread but I'd love to hear from anyone who has any thoughts on my 'therapies'.   Smile   I've gotten most, if not all of these ideas on this board and I so appreciate it.


    Last edited by kell on Wed Jun 15, 2016 10:15 am; edited 1 time in total

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    Post  PainBlogger on Wed Jun 15, 2016 8:01 am

    Yes can definitely be used internally as a moisturiser. It comes in prefilled applicators which can be used for that purpose (or the bigger tubes).

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    Post  emalita on Wed Jun 15, 2016 1:43 pm

    Also, Yes just came out with a vaginal moisturizer that is supposed to be longer lasting than the water based lubricant, but it hasn't been out long enough to have a ton of reviews.

    In my opinion, I wouldn't waste the money on the Yes prefilled applicators. I find them difficult to use, and they can leave a lot of product behind in the applicator, which feels like a huge waste to me. I personally just buy disposable applicators and fill them myself. That way I know there is no product waste.

    I had used coconut oil in the past and really liked it until it clogged a pore on my inner labia  Rolling Eyes  It was huge and VERY painful (had to have a doctor examine it). However, I had been using it right before bed, and I was wearing a pantyliner so it wouldn't stain my clothes or the bedsheets. So that wasn't a very breathable situation for my skin. I seem to be one of the few women that has to worry about this kind of stuff on my lady bits, but I figured I would throw it out there as something to watch out for.

    Below is a good website to check to see how a product rates for things like skin allergies and irritations. They rank things like cosmetics and sunscreens, too, but the below link is for Molly's Suds. Overall it has a good rating, but each individual is different in what can cause irritation. It's interesting to see how horrible a "gentle" laundry detergent can actually rank with all the nasty chemicals they contain. I spent weeks combing through this site, but I ended up deciding to just make my own laundry detergent, which is cheap, easy, and as free of chemicals as I can get while still cleaning clothes  Very Happy

    http://www.ewg.org/guides/cleaners/5835-MollysSudsLaundryPowder?formulation=6803

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