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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 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

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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


Botox Injection

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Botox Injection

Post  Husband on Fri Oct 01, 2010 3:07 pm

Hi Ladys,
Today is he day after. First at all I have to say, if this is going to work, I really do not understand, why Botox is not the therapy of first choice. It took about 10 minutes and in accordance with my wife, it was even not painful except this moment, when the needle is touching the skin for one second. She got this at 4 points and now we have to wait and see, how it works.
So fare no side effects. I will keep you informed.

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Re: Botox Injection

Post  jules on Sun Oct 03, 2010 4:48 pm

thanks for the update. I'm very interested to hear whether this works or not. how long were you told it would work for? i hope it works for her!

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Re: Botox Injection

Post  Husband on Mon Oct 04, 2010 7:15 am

Hi Jules,
So fare there is a positive development in spite of a 50 % reduction of Amitriptylin. This week she will stop taking Amitriptylin. The doctor told her it will last between 4 weeks in any case up to 12 weeks or maybe more. The problem seems to be the fact, that for generalized Vulvodynia it is not so easy to find the exact area for the injection. Maybe he has to repeat some injection elsewhere. But up to now we are happy.

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Re: Botox Injection

Post  jules on Tue Oct 05, 2010 2:46 am

I'm glad to hear things are going well so far. Is she going off the Amit. as a result of side effects or it just didn't work? I also have generalized Vulvodynia. I have used Botox on my forehead for frown lines. it only lasts for about a month for me. i imagine it would be the same in the vulva. hope your wife continues to have a decrease in her pain.

jules

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Re: Botox Injection

Post  Sebby (Admin) on Tue Oct 05, 2010 6:46 am


Glad it is going well so far and I do hope it can help to reduce the pain significantly!

Good luck to you both and keep us updated

Sebby
xxxx
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Sebby (Admin)
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Re: Botox Injection

Post  jules on Thu Nov 11, 2010 6:17 am

Hey Husband,

Please report: how did the botox work? would she do it again? if there was/is relief how much and for how long?

Would love to hear the report.

thanks!

jules

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Re: Botox Injection

Post  Husband on Sat Nov 13, 2010 9:25 am

Hi Jules;
After the reduction of Ami the pain came back. Back to 25mg Ami the pain dropped on an acceptable level. So we decided to repeat the treatment with a slight increase of 30 units Botox. But there seems to be not a real significant improvement. She still takes Ami and is it o.K, almost pain free, but we do not know how much the influence of Botox is. Maybe she is anyhow in a painless phase.
I think Botox is a very good option for vestibule vulvodynia not for generalized form.
The second injection has been done last week so I will keep you informed.

Husband

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Re: Botox Injection

Post  jules on Mon Nov 22, 2010 4:58 am

Good luck w/ the results of the second trial. Let us know how it goes. sorry it was not the miracle you were hoping for...damn this disorder. at least there are some meds that can help a little.

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Re: Botox Injection

Post  Husband on Mon Nov 22, 2010 10:36 am

It does not work, in spite of the second injection there is a flare up. However my wife shared the Botox with a woman, who suffered not at generalized vulvodynia and she reported an improvement.
Explanation for not working in our case could be: Botox is not a painkiller; there is more a relaxing influence at those areas. And for any pain which is linked to pelvic muscles problems this treatment is most recommendable.

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vulvoldynia, hip pain, and botox

Post  chester on Wed Nov 24, 2010 3:09 am

Hi! I am new here and just read your post. I live in ny and found a dr who seems to have found a connection between hip pain and vulvoldynia for SOME paitents she has found that paitents with the hip pain, botox helps and others the botox loosens muscles that are overcompensating for some other pelvic floor issue and can make the pain worse! I dont remember all the details but next time i am there i will ask her.

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Re: Botox Injection

Post  jules on Thu Nov 25, 2010 5:52 pm

husband, has your wife tried Lyrica? There are other meds that may help. Sorry the Botox did not work. Sometimes it takes the right mix of meds and also adding physical therapy. Good luck!

Chester....thanks for the info.

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Re: Botox Injection

Post  Husband on Fri Nov 26, 2010 8:23 am

Hi Jules, yes she also tried Lyrica. But she thinks Ami works better. However, since a few days, there is really a bad flare up. I recommended using both in combination. We will seeā€¦.

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Re: Botox Injection

Post  jules on Sat Nov 27, 2010 5:50 pm

I have not tried ami yet. Today, my pain is at a minimum. I think the meds i am using are helpful. hope your wife's flare up goes away soon.

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Re: Botox Injection

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