Vulvodynia Support
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» Hope to all my suffering ladies
3 years down the line.. EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
3 years down the line.. EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
3 years down the line.. EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
3 years down the line.. EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
3 years down the line.. EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
3 years down the line.. EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
3 years down the line.. EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
3 years down the line.. 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!
3 years down the line.. 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


3 years down the line..

4 posters

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Post  Newbie2012 Tue Nov 27, 2012 11:16 am

Hey everyone,

Ive been dealing with this condition for around 3 years and i am now 20 years old. My biggest problem with the pain is inserting tampons, sex etc, i have had no relief over the years dispite trying the different medications and being passed from pillar to post through all the different doctors/gynaecologists.

I have been looking at this forum everyday for around 6 months or so and have just had the courage to join, it's such an isolating condition and im at a stage now where im really depressed and can't enjoy my life. I have recently started seeing a guy that i really like, but feel i am stringing him along, our 3rd date is next week and the subject of sleeping together is bound to come up soon. I feel like this is the worst thing anyone could go through at this age & the guy is a year younger than me which doesnt help - what 19 year old guy is gonna stick around knowing i can have sex? pale

I have another appointment with the doc on monday to see what the next course of action is, i am also seeing a physiotherapist but this isnt helping and my appointments are almost 3 months apart (i get the impression she isnt interested either).

Feel like a weight has been lifted off my shoulders almost after writing this post, maybe talking to you girls about this condition will help after all.

Thanks for reading x

Newbie2012

Posts : 5
Join date : 2012-11-27

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Post  Newbie2012 Tue Nov 27, 2012 11:49 am

Another thing i meant to add..

I havent found the root of my problem with v yet.

I always have extra discharge down there and notice before i have a shower/bath that there is white bits on my vulva, which i thought was a yeast infection although was treated for this and it did not help. When i first started having problems i had a boyfriend, sex was ok at first and as the year went on it slowly got worse to the point where it is now impossible. When we met i went on the depo provera jag, i have no idea if this is the cause of all my problems, or if the fact i started having alot of sex has somehow damaged me down there (i had only had sex twice prior to that relationship).

I have so many questions about this condition my head could explode Sad

Newbie2012

Posts : 5
Join date : 2012-11-27

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Post  Alana3 Tue Nov 27, 2012 1:00 pm

First and foremost if that's all a guy wants he's not worth your time. However I do understand where you're coming from it was pretty much the same for me. Have you tried anything for the v? I don't know if you'll ever find out exactly why it was caused but it doesn't matter all that matters is getting well. Where are you from what kind of treatments have you tried? Remember you're not aloneays thought I was but joining a support group is the greatest thing you could do o unless you have this issue no one knows how hard it really is and that's it not just sex and pain but emotions too Sad

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Newbie2012 Tue Nov 27, 2012 1:13 pm

Thankyou for the reply. Im from Scotland and have tried amitriptyline & gapapentin but couldnt cope with the side effects, not to mention they werent helping in the slightest anyway. At my doc app on Monday im going to mention the lidocaine gel also. I bought some dilators recently aswell but i want to speak to my physio first before i attempt to use them.

Have you had any success at treatment?

Thinking about telling the guy i am seeing i am just not interested, cant cope with the embarrasment of having to tell him about this problem Embarassed ..although the thought of being like this when it comes to relationships for the rest of my life is depressing!! Sad




Newbie2012

Posts : 5
Join date : 2012-11-27

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Post  Alana3 Tue Nov 27, 2012 2:32 pm

I'm headed for surgery next week I'm done with the mindless medications that don't work. My doctor put me on the meds you've tried but as a compound that I topically applied, maybe that will work for you?? I have tried physical therapy it helps with muscle but the skin OMG still hurts so bad Sad

As for the boys trust me I get it, I hate even dating it makes me uncomfortable because I don't know how they'll react to my hooha. It's such an annoying issue ugh

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Newbie2012 Tue Nov 27, 2012 5:58 pm

Surgery is something I've been thinking about for a while. What kind of surgery is it you are having? I've read about a few different types. Fingers crossed for you that it cures if not reduces your pain! Are you in the UK aswell?

With the cream did you get this from the gyno or was it a dermatologist? Definitely something I will mention at my next appointment.

Newbie2012

Posts : 5
Join date : 2012-11-27

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Post  Alana3 Tue Nov 27, 2012 6:36 pm

Actually, I'm in Florida, so a ways off from you. Where in the UK are you located??

I'm getting a partial vestibulectomy- if I don't chicken out- I have my pre-op tomorrow. I can let you know how it goes if you'd like. I got my topical from my gyno he belives that I shouldn't have to have really bad side effects if it can be applied elsewhere, which I really liked. Unfortunately, today I have a lot of pain, (mine is usually provoked but when it gets close to my period it's pretty bad) but I guess it's good for my appointment tomorrow. I don't want him to leave anything off get it all. This is so debilitating (now the pain feels like its all over although I know it's only in one spot ugh!). What kind of surgery were you looking for?


Alana3

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Join date : 2012-09-25

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Post  Newbie2012 Wed Nov 28, 2012 11:20 am

Im not actually that clued-up about all the surgery for v, although ive read a few things on the net. Probably something i should have a talk to my gyno about however ive also heard they are reluctant to perform surgery for this condition, only do it as an absolute last resort.

Thats not good to hear you were having a bad day with pain yday Sad those kind of days are the ones that make you feel really down & out more than usual. Good luck with the pre-op & please let me know how it goes!




Newbie2012

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Post  Alana3 Wed Nov 28, 2012 7:54 pm

So my preop... I'm not going to lie it hurt really bad they did the mapping, basically I told them where it hurt he drew on it and he took pictures of it to bring it in the OR with him. But omg it hurt. (I keep telling myself only a little more pain for a little while longer).

I told the doctor that I was scared to death. He said it was normal, and that he personally had only success stories and that I'd be 90-95% better if not all the way. He showed me EXACTLY(my pain was spread over a way bigger area than I originally thought) what he was taking off and explained the procedure. Until I actually talked to him about it I was crazy scared. He told me he used tiny sutures so that it wasn't as uncomfortable and that I could go back and do everything I'm doing now (which includes horseback riding and zumba) in 6-8 weeks. He also said that the pain wouldn't be as bad as I thought and that I'd probably be wanting to get out of the house within 5 days or so. I feel a lot more confident then I did even yesterday.

I just feel that this is the best way to go at this point, nothing else has helped, and I can't stand being in pain anymore than I have to. Also, the nurses and such in the hospital said I had a really good surgeon and good odds, so I feel OK. My doc tried a lot, but unfortunately, after I got to him, I was just fed up with failed treatments (its been about 6 years of pain, and 4 years of knowing something was really wrong, and countless doctors) so I told him I'd try one more thing, and it failed, and even made it burn. He was just like it's not worth being in pain and that's when he recommended surgery.

Alana3

Posts : 1093
Join date : 2012-09-25

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3 years down the line.. Empty hello people

Post  Dra.Cherrym Fri Dec 07, 2012 7:54 am

I am from Nicaragua, i have been suffering from this for almost a year now, it started just a few weeks after i got married, it's better now but i am really afraid that this might come back, i'm trying to do everything i can to help, i want to try neogyn but i can't get it here, have any of you tried it? when i read what you have posted makes me more afraid because i have read so much that i do not now what to do or eat anymore, some people say oxalates, others say not to eat anything too acid. I need someone to talk to, to share this with, what experience have you had with the diet? i am relieve that i found this group, at least i know that i am not alone, and i pray everyday and ask God for help. F

Dra.Cherrym

Posts : 3
Join date : 2012-12-07

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Post  Karen818 Mon Jan 07, 2013 1:29 am

Try neogyn ladies! It has helped me sooo much words cannot explain how miraculous that cream is. I have suffered vestibular vulvodynia for years and only after 4 weeks of using neogyn i feel better! I am pain free 99% of the time, and sex is 99% percent pain free as well! This is a revolutionary discovery for women like us and I recommend all of you to give it a try, it won't hurt to try! My vagina is finally not on fire, but feels hydrated, cool and comfortable, I am so thankful to the creators of neogyn! So try that out see if it works, and sleep with no underwear at nights to less your vagina breathe and get some air... Good luck!

Karen818

Posts : 7
Join date : 2012-12-09
Age : 34
Location : Los Angeles, CA

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