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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Can anyone else not have sex AT ALL?

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Can anyone else not have sex AT ALL?

Post  searchingforacure_ on Sat Apr 29, 2017 7:04 pm

Hello,

I have struggled since I was 15/16 with vulvodynia and it was always annoying, but it never prevented me from having sex until about a year ago when I had a serious flare up. Since then, I haven't been able to have any sexual activity at all....if anyone else has gone through this, how did you cope? Were you able to find a partner still? I feel so hopeless...

searchingforacure_

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:00 am

I don't wish to dishearten you, but I am no longer able to have sex. Maybe someone else has found a way around the pain and can offer some useful advice.
I had to have a cervical smear earlier this year and I was crying out in agony.
I was given these things to try, they are like plastic penis' in varying widths, the first being about the size of a finger, progressively getting bigger, until "normal" penis width. You're supposed to lubricate them and gently insert them into yourself when you are relaxed and comfortable, so that you break away from that initial "freeze"\frightened of the pain response.
The theory sounds good, but I'm to afraid to try.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  Dora The Explorer on Sun Apr 30, 2017 6:45 am

My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

Dora The Explorer

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Re: Can anyone else not have sex AT ALL?

Post  chancesunny on Thu May 04, 2017 9:18 pm

Physical therapy is key!!! I had pain during sex for 3 years and I also felt hopeless. After literally years of research and trying every kind of medication, I found a physical therapist who specialized in relaxing muscles by applying pressure with her fingers to my pelvis area. She also trained me on how to release my pelvic muscles which was exactly what helped me with my vaginal pain. The sad thing is that a lot of women don't like to have anyone touch them in the way that they need to get better. It is extremely painful in the beginning but it is so eye opening. I completely recommend physical therapy to anyone having painful sex. I used to not even be able to put a tampon in and now I'm having painless and wonderful sex. I do still have some pain time to time but I know what to do to release those muscles and calm myself down. I hold all of my stress in my gut so that's why the pain came on - I was going through a very stressful time at work. Good luck!

chancesunny

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I can't

Post  Gill on Sat May 06, 2017 7:56 pm

I can't have sex.

There are two main things I do to tackle it:

- My husband and I went to a great psychosexual counsellor who talked about 'other things' we could do in the bedroom, and that helped a lot. We've been together for 3 years since finding out.

- I keep on researching and going to Drs and reading forums etc. I had some improvement from PT, enough to be able to put in a tampon. Had partial vestibulectomy a few months ago (mine is provoked and localised, so am an excellent candidate), and had further improvement, but still not enough for sex. I'm not giving up hope yet; dr says it might get better with more healing. Otherwise hope to push for more surgery.

Gill

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Big fat nope to sex

Post  KaseyT85 on Wed Jun 07, 2017 1:52 pm

I used to be able to have sex, but now it is just too painful.
I am about to commence using the dilators for physical therapy to try and retrain the muscles.
Also, I have been diagnosed with a dermatitis in addition to the vulvodynia so I am using steroids, soap free aqueous cream in the shower and barrier cream.
I am hoping to see results over the next couple of months.

I would suggest trying to obtain a referral to a vulval clinic for them to review what might work for you.

It is a terrible condition, I wouldn't wish it on anyone. Not only physically, but mentally as well.

Best of luck Smile

KaseyT85

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Re: Can anyone else not have sex AT ALL?

Post  mary jane on Wed Jun 07, 2017 2:31 pm

Dora The Explorer wrote:My story likely starts from birth. As a baby apparently my mum couldn't get rid of my nappy rash, the only thing that would help was metanium, sudocream didn't touch it. As a teenager, I believed I had a lot of thrush, so used canestan like it was going out of fashion, especially as I got older and started having sex, after sex I would itch horrendously.
Once I started living with my husband, and having sex more regularly I really regularly would use canestan. Then it turned from itching to pain, to the point it was like I was being raped. Then I sought help. I was diagnosed with vestibulitis, but I think all the creams I was prescribed also irritated my skin. My skin is sensitive at the best of times, so I seem to have eczema and vestibulitis. I itch constantly and haven't tried sex for 3 1/2 years.
I don't have the constant daily pain that others describe, I itch constantly, and scratch the itch so tear myself apart and have pain that way. And if anything touches one of the 4 glands that surround my vagina, it's like I've been touched with a red hot poker. Last time I had sex the pain was horrendous, and my last smear confirmed that it still would be.

the ithcing sounds like neuropathic itch. Have you ever taken medication for this? They used to treat this condition with alchohol nerve killing injections

here is the link:

http://www.atlasofpelvicsurgery.com/1VulvaandIntroitus/9alcoholinjection/chap1sec9.html

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Re: Can anyone else not have sex AT ALL?

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