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

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

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

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

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

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

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

» Help New Diagnosis
Help- just diagnosed 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- just diagnosed 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  raffles32 Mon Oct 29, 2012 11:58 pm

Hi there- I am a 30 year old based in the UK. Since I started having intercourse at 19 I have had issues with painful sex. I finally got to the point where I would tell boyfriends I simply couldn't have sex and lost a lot of relationships that way.

I am with a guy now and we have been together for 4 years. I was upfront with him but after 4 years its driving him mad and yet another relationship is on the rocks. I simply have no libido due to sex hurting and avoid it when possible..this obviously hurts him even though he knows its not his fault.

Anyway- I have been to the GP, tried lidocane, steroid cream, aqueous cream, different lubricants etc..nothing works...so she sent me to a Gyno..who poked and prodded me- soo painful! and concluded I have vestibulosis or provoked vulvodynia. He explain two of the four glands were extremely sensistive and caused pain at the lightest touch and that modern medicine sadly couldn't help me as there is no cure!

I feel totally lost...I feel like I have been handed a death sentence for my realtionship and any future ones. I mean who would want to spend the rest of their life with someone who can't have sex..I know I wouldn't want to!

I feel so very low. I have been on the depo injection for 10 years and I was hoping he would say it was that. Although he said there would be some merit in changing birth control, he didn't say that was likely to be the problem :-(

raffles32

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Join date : 2012-10-29

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Post  Loulou Tue Oct 30, 2012 10:31 pm

Hi Raffles

So sorry to hear that you are suffering and feeling low. We can certainly empathise with you here. And i must admit i feel like slapping your gyno! Being defeatist about this condition isn't helpful. Its not a straightforward condition so agreed, there isn't ONE cure that fits all but it is possible to improve and some women do find their 'cure'. (you just hear less about these cases as they are presumably getting on with their lives rather than participating in forums like this)

On a practical level, I don't have the vestibulitis form of vvd so am not best placed to give you any pointers on that but reading other women's comments here it seems some have found some relief and progress through densitisation techniques with dilators (i'll let the 'experts' here comment more on that). Also have you had yourself checked by a women's health physio? A tight pelvic floor can be a factor.

So don't give up hope - it doesn't have to be a death sentence for your relationships. There are good men out there - some of us here can testify to that.
x

Loulou

Posts : 124
Join date : 2012-01-18

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Post  raffles32 Tue Oct 30, 2012 10:56 pm

Hello

Thanks for this. I am pleased there are forums like this or it would be even worse not knowing others understand. Its not really the best topic f conversation with your friends and family!!

I have absorbed a lot of info over the past 24 hours on the internet and you are right, I shouldn't give up hope and I am going to fight. I am going to go back to my GP and insist that she looks further into a specialist in this area as opposed to just a general gyno and she is actually a very good GP and has been doing her own personal research so I am sure she will be receptive!

As for the relationships- I guess I have to face that my current one is likely to end as we have already nearly broken up so many times over this ad having a 'no cure' solution could be the final nail. I suppose I am just scared of the concept of dating again and havingto drop the bombshell! Its not the most appealing characteristic in a girlfriend..but also I feel sad because I see all the movies and Tv shows I love and see scenes with sex and the passion etc and know I will never have that

raffles32

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Post  Alana3 Thu Nov 01, 2012 8:44 pm

Have you tried any sort of treatment yet? When did yours start? And where are you from?

A change of attitude will help (I am saying that nicely not bitchy). If you say never it really NEVER will happen. But if you arm yourself with as much information as possible more than likely you will find something that will help. I have had this for 4 years and was enjoying sex for a few months until we broke up. But please be as positive as possible, it will not help if you sit around and mope (coming from someone who has been there). There are "cures" surgery being one of them, but try all the little things before the big thing. I hear surgery is good (and am going in for mine in December).

That being said, I know what you're feeling and it does suck, this isn't easy and it's frustrating and it hurts! So I do understand... But you can let it control you or you can control it. You're both living in the same body so... you get the point I'm sure.

Changing my attitude really helped, and I started exericse and eating better my pain factor went down. Don't listen to that doctor there ARE things you can do and you WILL feel better and yes, enjoy sex again. Right now I'm in the same boat, and it does hurt, my last pelvic was absolutely horrible! But we were at the end of options so I voted for surgery after he suggested it. Remember, there is ALWAYS something you can do and you CAN fight it! Please don't give up!!! This forum is also good for the morale because you realize you aren't alone. And you aren't you can message any of us anytime and we're happy to help you.


Alana3

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Post  raffles32 Thu Nov 01, 2012 9:16 pm

hi

thanks for the reply. I am trying to stay positive but its hard as don't have a very supportive boyfriend . I am in bristol and have tried steroids, lidocane, tablets and aqueous cream but nothing worked. definitely going to talk to the gp about surgery and estrogen as not gone down those routes

raffles32

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Post  tandaschroeder Thu Nov 01, 2012 9:31 pm

raffles32 wrote:Hi there- I am a 30 year old based in the UK. Since I started having intercourse at 19 I have had issues with painful sex. I finally got to the point where I would tell boyfriends I simply couldn't have sex and lost a lot of relationships that way.

I am with a guy now and we have been together for 4 years. I was upfront with him but after 4 years its driving him mad and yet another relationship is on the rocks. I simply have no libido due to sex hurting and avoid it when possible..this obviously hurts him even though he knows its not his fault.

Anyway- I have been to the GP, tried lidocane, steroid cream, aqueous cream, different lubricants etc..nothing works...so she sent me to a Gyno..who poked and prodded me- soo painful! and concluded I have vestibulosis or provoked vulvodynia. He explain two of the four glands were extremely sensistive and caused pain at the lightest touch and that modern medicine sadly couldn't help me as there is no cure!

I feel totally lost...I feel like I have been handed a death sentence for my realtionship and any future ones. I mean who would want to spend the rest of their life with someone who can't have sex..I know I wouldn't want to!

I feel so very low. I have been on the depo injection for 10 years and I was hoping he would say it was that. Although he said there would be some merit in changing birth control, he didn't say that was likely to be the problem :-(

Hey Raffles! I didn't read any of the replies--maybe I should have so I don't repeat anything anyone said. however, I just want to tell you not to give up. There are SO MANY doctors that are unaware of this condition. I've been to plenty of them who tell me there is no cure. I found a specialist that is amazing. In every way. I have also been talking to some ladies on here that have told me that surgery brings 85-90% of women a cure. THERE IS a cure. I have heard so many amazing cure stories. You WILL get through this. But maybe in the UK, doctors aren't as aware? I'm not really sure. But I am currently questioning surgery.

tandaschroeder

Posts : 26
Join date : 2012-10-30
Age : 36

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Post  raffles32 Thu Nov 01, 2012 9:53 pm

Thanks- I am definately going for a second opinion...the gyno I saw was rubbish but my GP has been amazing. i would be really interested to hear from any women who had success with surgery- dis you say you spoke to them on here??

raffles32

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Post  tandaschroeder Thu Nov 01, 2012 10:00 pm

raffles32 wrote:Thanks- I am definately going for a second opinion...the gyno I saw was rubbish but my GP has been amazing. i would be really interested to hear from any women who had success with surgery- dis you say you spoke to them on here??

I have mostly read. Here is a forum section I found helpful:

http://www.vulvodyniasupportforum.com/t702-i-got-the-surgery#4590

I am in your same boat. And am seriously miserable.

tandaschroeder

Posts : 26
Join date : 2012-10-30
Age : 36

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Post  kalinikta77 Mon Nov 05, 2012 2:49 am

Go find a new doctor. Now. Find one who specializes in sexual dysfunction, pelvic pain, etc. When my gyno gave up, she recommended a sex therapist who diagnosed me almost instantly (provoked localized vestobulodynia) and got me started on a treatment plan right away-including taking me off my birth control, which was associated with vulvodynia. You DO have options. You just need to find a doctor who can show you what they are. Keep trying until you find that person.

kalinikta77

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Join date : 2012-11-05

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