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

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


any advice please, I'm at my wits end :(

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any advice please, I'm at my wits end :(

Post  sailor_moon on Mon Oct 05, 2015 4:18 am

Does anyone else suffer visible redness/inflammation? I do, from my urethra down on my inner labia and either side of my inner labia where it meets the outer labia in the 'crevices' so to speak. It is always the same areas that are red and inflamed. And so so so itchy. My burning is confined to either vestibule but I itch worst from my vestibule up to my urethral opening.

Does anyone else suffer any redness at all ,and if so, does it get redder and more inflamed during a flare up?

I am at my wits end here, I feel like saying to the doctor just give me a nerve block and if that doesn't work cut the frigging affected skin out...but obviously my urethral skin and inner labia cannot be cut....it is a very scary thought, I don't want to be left looking deformed down there either. I feel like I am going insane. I think about my vulva 24/7.

I want to have a baby but with the possibility of pudental neuralgia, pregnancy would make it worse...I can barely cope day to day now.

Has anyone been pregnant with vulvadynia and inflammation down there? did it make things worse?

I also have white stuff that looks like little tiny bits of flaky wet toilet paper coming off me every day, stuck in my crevices where I itch . IT IS NOT LICHEN SCLEROSIS, I have had 2 biopsies that show only inflammation. I do not have white patches of skin either. And steroid cream makes everything worse. It is not smegma because I shower twice daily and keep the area clean. Does anyone else have this problem? I did recently test positive for yeast, I have tried fluconazole long-term and clotrimazole and it has not worked. It was just candida albicans, not any other from of yeast.

I am literally getting teary-eyed as I write this because I feel like I have tried everything and nothing has worked. Nothing even brings relief. Sad

I have tried all steroid creams, Probiotics, Yeast treatment, PH balancers, Herb suppliments, any form of antiseptic, healing cream, zinc cream, baking soda baths, antiboitics, nothing has worked....what the hell do I do? Evven had a laproscopy and hystoscopy but no internal cause was found.

Even someone to chat to would be nice...I was on the secret FB group but had to leave due to someone trying to hack me and I can't risk anyone finding out I have this problem as certain people would make life hell for me.
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Re: any advice please, I'm at my wits end :(

Post  sgw11 on Mon Oct 05, 2015 10:12 am

Hey sailor_moon,

I just thought I'd reply, I know what it's like waiting for a response and not getting any! I also suffer from visible redness and inflammation. I recently went to my gynecologist and she said that some women's vaginas will just always have a more swollen appearance. After I have sex (which is rarely unfortunately), I do notice swelling, so I usually put an ice pack on there afterwards to try and reduce the tenderness for the following day.

I do not experience any itching like you, so I can't really comment on that sorry! However I did have pain around my vestibule, but that has gone since being on amitriptyline oral medication, but I still have provoked pain on my vulva. I know how you feel, all I seem to be able to notice is how my vagina is feeling each day, when it feels irritated, when I'm in pain etc. It's exhausting! And it makes me upset too. I've had this for over 2 years now and I feel like I've done bloody everything! Since my pain has become more localized, I am a candidate for surgery, however like you, I am unsure if I even want to do it! So much recovery time for something that may only just reduce the pain, not get rid of it entirely.

I have also never been pregnant so I can't comment on that question.

Please feel free to message me, whenever you need. We should always help those around us, especially someone going through this!

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Re: any advice please, I'm at my wits end :(

Post  sailor_moon on Mon Oct 05, 2015 10:27 am

Than you for your reply. I really appreciate it. I haven't tried Ami yet but I have tried Lyrica for 6 months which did nothing but make me fatigued and fat! I will ask my doctor about it when I see him this week, but he said if it were nerve related Lyrica should have helped.. though Amitryptilene is the number 1 drug for vulvodynia. Did taking it reduce the redness? I get swelling too...it sucks.

Surgery is such a scary thought, especially if it fails, it is a lot of time,money and changes the appearance of your vulva. I would hate to be left looking deformed and still be in discomfort!

I ended up having a massive big cry to myself earlier. I used to hardly ever cry...now I feel that crying alone by myself is all I seem to do when I have time to myself. I try to talk to people I'm close to but it always gets turned back on me, like "You must be doing or using something to be causing this", "There are people so much worse off than you", "Crying isn't going to help you" ect. So I pretty much just give up on trying to discuss it now I think.

Was your pain unprovoked? The doctor told me that itching can be a "milder" form of nerve pain. That itch turns into burn. I never experience the itch and burn together, it is either one or the other.

Thankyou again for your reply. I'm very active on here and in return if you ever need to vent feel free to message me!

I have been suffering 2 and a half years, around the same time as you so I dare say we must be on a similar level emotionally. This condition really is hell.

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Re: any advice please, I'm at my wits end :(

Post  sgw11 on Mon Oct 05, 2015 11:50 am

Yeah I've been on Lyrica too and it did nothing except make me experience anxiety which I've never suffered from before, so I got off it after about 4 months. My redness and swelling is more attributable to sex, so I'm not sure if it reduced the redness in general sorry.

Yep, I've been crying a lot more lately too. I'm going to see a psychologist about it in a couple of weeks and see if I can do anything to stop this disorder from making me so upset. It's so hard to remain hopeful.

My pain was initially provoked, then in the past 6 months or so it did become more generalized, but since I've been on the amitriptyline (for about 3 months now), it has returned to provoked, which is a minor win i suppose! I used to feel a burning sensation too when the pain was more generalized, like from sitting down all day etc.

Thanks Smile yep sure is! no doubt about that.

I just want it to be over!

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Re: any advice please, I'm at my wits end :(

Post  miss.panda on Mon Oct 05, 2015 2:21 pm

Hi both,

I suffer from a redness down there too and it used to feel a bit swollen after sex. Doctors have always said to me that my vulva looks normal though and that some women just have ones that are more red than others. I don't think the swollen feeling is normal though?

Don't give up sailor_moon Smile I know its easy to feel that way though. As you haven't tried amitriptline yet maybe give that a go?


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Amitriptyline

Post  amyhp on Mon Oct 05, 2015 7:23 pm

lils.panda, Has Amitriptyline worked for you? I have done Lyrcia and Cymbalta before my surgery and they did not help at all. Surgery had helped my provoked pain, but my unprovoked pain is still here.

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Re: any advice please, I'm at my wits end :(

Post  miss.panda on Mon Oct 05, 2015 8:37 pm

Hi amyhopexoxo Smile I have used amitriptyline in the past but I don't think I persisted with it long enough and I think I only tried a small dose so I'm going to ask my doctor if I can try it or something else similar again. The past 2 years or so I've been feeling like jusat giving up with it all but I want to start trying again to find a solution. I'm really curious with what the surgery was like? What exactly did they do or remove? Would you recommend it? Thanks Smile

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Re: any advice please, I'm at my wits end :(

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