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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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Anyone tried BOTOX

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Anyone tried BOTOX

Post  mieko25 on Tue May 18, 2010 2:21 pm

Has any one tried Botox? I have tired just about everything under the sun for vulvodynia. I am now tring to get the insurance to approve botox. I have vulvodynia, vestibilius + pelvic floor dysfuntion. Here are some things that I tried I listed if they helped or not?


Vulodynia started in September of 2008. I was 1 month pregnant with my second child. I was on clomid to conceive my second child two week before the vaginal burning started. First was treated for a classic yeast infection with difflican for 2 weeks 100 mg a day. Then tried difflican 200 mg a day for week. Then I did 3 rounds of antibiotics, plus over 10 vagainal cultures.

In January of 2009 I was sent to dermatologist who tried steroid creams and biopsy of the vulva which came back inflammation of skin:
Cream I have tried:

Desonide 0.05%- work for about three months
Clobetasol 0.05%- made it worst
Lidocaine onitmant 5%0 made it burn more
Clotrimazole and Betamethasone- made it burn more
Lidocaine Jelly 2%- did help numb it for few month them quit working
Triple Anit-Inch cream COMPOUND of Traimo 1% lidocaine5%benadyl 1% seems to help the most I use this most before sex.
C-GABA6%AMIT2%Tramo.25%- was too strong make me burn more
Capsaicin 0.005%- Seems to help for a few hours
Valium suppository’s 5mg with muscle relaxer- did not help also made me drowsy
Earths Mamma Bottom Balm- seems to help the most it gives it a cooling sensations
Desatin Diaper rash cream- seemed to help when burning was intense
A & D Diaper rash cream- seemed to help at times
Estroil- COMPOUNDED cream- seemed to make it worse
Ice- helps
Low oxliate diet- didn’t help
Calicum- helps a little with burning with urination

Oral meds-
Neurotin- didn’t help
Elavil- didn’t help

Physical Therapy-
7 months 30 visits with Karen Newton- helped some tried diolators but they seem to make it worse.
2 month 8 visits with another physical therapist I forget her name

mieko25

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Thu May 20, 2010 8:51 pm

Thanks mieko for all the info and welcome to the forum, its really helpful for people to compare notes on treatment.

I will take a look at that Triple Anit-Inch cream COMPOUND, I have not found creams that have made a significant difference yet.

I have not tried botox, I didnt know that was a treatment?

What exactly does it do to help?

Sebby
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Re: Anyone tried BOTOX

Post  tweety on Tue May 25, 2010 12:25 pm

Hi Mieko,

I've been working with my physio for 3 months now and am just wondering what exercises you did with the dialators? Having preciously been to a physio before this, and I've found my current one is taking a different approach which I feel seems to work well for me & my body and might help you too.

No, I haven't used botox. I'm hoping I don't have to venture there or surgery of any kind.

Cheers,

Sue

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Wed May 26, 2010 10:07 pm

Sue, what approach is the physio trying? I havnt been offered physio but I will ask when I go to the vulval clinic

I have thought about trying dialators just to see if it would improve things?

Im still trying to find a biofeedback practioner in London, I emailed Dr Glazer's team and one of them is going to help me find one hopefully otherwise I will purchase the online home kit.

Sebby
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Re: Anyone tried BOTOX

Post  tweety on Sun May 30, 2010 12:54 pm

Hi Sebby,

With my last physio, it was all about using dilators to stretch the muscles and get use to the feeling of the dilator. And from there progress to larger sized dilators. She also made me aware of my pelvic floor muscles and did exercises such as contracting and releasing.

A large part of my problem is around tension in my pelvic muscles. In a normal relaxed environment, all my muscles are actually tense and I was never aware of this. So with my current physio, my homework for the first few weeks was actually getting my muscles to go back to a relaxed state. This involved me spending hours literally just massaging all my muscles - my thigh, pelvic and abdominal muscles. Thereafter, the dilator has been used more as a tool to to touch the vaginal area not stretch (as my body is not ready for that yet - as advised my the physio).

So far, I have found that I am extremely aware of my pelvic muscles and can feel when they tense up. Whereas before, they were always in a tense state. I still have a fair way to go as part of my treatment is also re-training my brain. Because I've had this for so long, my body automatically reacts to anything and anyone foreign including my physiotherapist.

She's also checked my back as well and found I had some tight spots there which can compound the problem. I also get what she calls referred pain and I have days where certain parts of the pelvic area just ache all day and I cant sleep. The next step in her treating me is for her to treat internal trigger points which may reduce or eliminate some of the referred pain I feel. However, I'm not at that stage where she can treat me as yet.

In addition, she gave me a book to read about pain. And for me, it does help to understand this problem more and understand why my body feels pain. Based on the book, the first method of using dilators to just stretch my muscles has reinforced the notion that anything in the pelvic region equates to pain. So the approach taken by my current physio is to ensure any physio treatment & homework never causes my body pain. If it hurts; Stop.

It's a little difficult for me to know whether it's just the physio which has helped my problem. As I am also started taking tablets at the same time to help "de-sensitise" me as well.

Hope I haven't blabbed on too much. Let me know if you want further details

Take care,

Sue

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Re: Anyone tried BOTOX

Post  tweety on Sun May 30, 2010 12:59 pm

Hi Sebby,

In regards to biofeedback, it helped me to strengthen my pelvic muscles which can be positive in the treatment. However, I must admit, until my current physio, I was never aware of the muscles b/w abdomen and vaginal area ; and these muscles were very tense... literally rock hard. But these muscles are very important.

Cheers,

Sue

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Mon May 31, 2010 5:10 pm

Thank you Sue, I will definately ask for some Physio or Bio-feedback treatment. The reason I am wondering now more than ever if it is linked to my pelvic floor muscles is becasue prior to the Vulvodynia I had and probably still have Vaginismus.

Sex was always therefore difficult as my muscles would tense up, and dont talk to me about tampons!! lol

I am doing just basic tightening and loosening exercises and the moment just off my own back which I read up on, on the vulval pain society website.

I havnt heard yet from the clinic so i am going to chase up my Gynea, I need to get the ball rolling a bit faster!!!

Thanks for the info it is very helpful

Sebby
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Re: Anyone tried BOTOX

Post  tweety on Wed Jun 02, 2010 1:40 pm

Hi Sebby,

Just to give you more information, even though I had previously gone to a physio and made aware of my muscles, and then did biofeedback exercises which required contracting and releasing the pelvic floor muscles; it's only now that I realise how large the muscle spans and what muscles play a role in the control of the pelvic floor muscles.

Like you, I really had thought I knew how to control my pelvic floor muscles prior to this physio (you know contracting and releasing). But now I can actually feel how my ab muscles and lower ab muscles, thighs all tense up. Im a very tense person. They tense up when Im driving cos driving stresses me out.

To give you an idea of how much work I've done to loosen my muscles, I literally spent 2hrs each day just massaging into my thighs. At the start I got carried away and left a couple of thumb print bruises. I was unemployed the past few months which really gave me a great opportunity to just focus on my homework. Now I'm back to work I'm finding it difficult to find the time to really relax and work on my exercises.

I'm not sure about you... but since I've had to deal with this for a while now... I've found that its become more of a psychological challenge. And now that I'm having to slowly re-train my brain to control my muscles and relax... it's quite difficult at times. There are times where I tell myself to relax and I feel my muscles loosen then it'll just jerk back and tense up. Personally, I like the approach of "if it hurts don't do it" - so no more using dilators for stretching for now - that's my physios orders =)

I see my physio at the end of this week so I'll ask for the title of the book I was telling you about =)

Cheers,

Sue

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Wed Jun 09, 2010 10:01 pm

Thanks so much for the info, I will be asking my dr about this. Im still trying to chase up my appointment with the Vulval clinic.

Bloody NHS lol

Even if I can just reduce the pain I will be pleased.

Good luck and take care....and I look forward to receiving the title of that book

Sebby
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Re: Anyone tried BOTOX

Post  jules on Sat Jun 12, 2010 3:50 am

Hello.... I have not tried Botox. I have seen mixed reviews on Botox as a treatment option for Vulvodynia. But, I believe in trying everything at least once. I had horrible experiences w/ all creams, lotions, gels and ointments. I tried all steroid creams and ointments and anti-fungal creams etc. They actually made my condition worse. I have never tried the physical therapy but, i am being referred to a pain clinic that has a expertise in Vulvar pain in Minnesota. I am on Neurontin. It cut my pain in half. I see you did not list Lyrica. I am on 100 mg of Lyrica per day. I actually had almost three weeks of little to no pain w/ the addition of Lyrica. I have asked my doctor to increase the dosage. I would ask your doctor about Lyrica. They are currently doing a study in Oregon on the use of Lyrica for Vulvodynia pain. Oh..by the way, I have generalized vulvodynia (pain all over the vulva) I also have pelvic wall dysplasia. I am hoping the physical therapy will help w/ this.

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Tue Jun 15, 2010 2:08 pm

Im gonna have to get a pen and notepad and note down all the great advice you guys are giving.

I do so need a medication that can help and I would be so happy if one did cut the pain in half

Thanks for the info, just gonna find my notebook lol I will be taking an essay to the vulval clinic!

Sebby
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Re: Anyone tried BOTOX

Post  naomi on Wed Jun 16, 2010 5:20 pm

HI Sebby!

I found it easier to go to new appointments with my Mum or Dad (nothing phases my Dad now with all of my crap going on, Bless him!!) or a mate to go with me. I can get quite upset with it all and its an extra set of ears that helps to listen and write important things down.

Also I print out lists of medications, doctors etc in a timeline so they can see it on a page in front of them.

If only life was a bit easier!!!

xxxxxxx
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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Wed Jun 16, 2010 7:35 pm

Yep I take my mum to every appointment, really helps to have someone wiv you. Especially when they tell you its all in your head! Grrrrrrrrr Mum tells them off! I need the support its so tiring and draining that I dont always feel I have any fight left in me.

The next one to tell me its all in my head will get my newly created level arch file smacked over their head

Laughing
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botox

Post  sc on Fri Sep 17, 2010 3:45 pm

Haven't tried the botox yet, but it is the next recommended treatment by my specialist. My condition is clitorodynia caused by an injury. Had surgery to correct the tear and have tried everything available for the pain in my clitoral area all to no avail. Sadly the botox is expensive and is not covered by insurance so financially this is not an option for me at this time. Some people are getting some relief with low dose antidepressants, but the side effects can be daunting so you may have to try several before finding one you can live with. I would highly recommend joining the NVA to find a specialist in your area as most gyno's are not prepared and most have no knowledge regarding vulvodynia. Hang in there.

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Re: Anyone tried BOTOX

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