Vulvodynia Support
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» Hope to all my suffering ladies
starting neurotin tonight... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
starting neurotin tonight... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
starting neurotin tonight... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
starting neurotin tonight... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
starting neurotin tonight... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
starting neurotin tonight... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
starting neurotin tonight... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
starting neurotin tonight... 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!
starting neurotin tonight... 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


starting neurotin tonight...

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starting neurotin tonight... Empty starting neurotin tonight...

Post  ilovebaxter1 Mon Mar 26, 2012 11:56 pm

has anyone had sucess with this??? i'm starting it tonight 100mg and slowly working up to see if it will help with my problem. I'm taking it for the irritation and itching of my vulva Smile hoping it works!!!

ilovebaxter1

Posts : 47
Join date : 2011-09-13
Age : 32
Location : Boston

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starting neurotin tonight... Empty Gabapentin

Post  xlmc89x Mon Apr 16, 2012 8:51 pm

I actually just started gabapenten and I'm u to 300mgs-- uppingmy dose to 400mg tomorrow.. how have you been doing on it?

xlmc89x

Posts : 8
Join date : 2012-03-24

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starting neurotin tonight... Empty Re: starting neurotin tonight...

Post  ilovebaxter1 Mon Apr 30, 2012 5:20 pm

Sorry to reply so late! Hi! I'm up to 1400 Mgs so far and still haven't felt any relief. Right now my doctor said to go up to 2500 Mgs. I haven't had any side affects besides a little sleepiness when I go up a dose but then it goes away after a few days. How are you doing on it? How far are you now?

ilovebaxter1

Posts : 47
Join date : 2011-09-13
Age : 32
Location : Boston

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starting neurotin tonight... Empty Still nothing

Post  xlmc89x Fri Jun 08, 2012 2:36 pm

I'm at 1400mgs now and I don't feel any relief, how have you been doing? I've been using a topical steroid for the inflammation as well and I just started physical therapy yesterday but so far haven't felt much of a difference.

xlmc89x

Posts : 8
Join date : 2012-03-24

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starting neurotin tonight... Empty Re: starting neurotin tonight...

Post  ilovebaxter1 Mon Jun 11, 2012 4:16 am

Right now i'm up to 2500 mgs and still no difference Sad since november ive been using clobetasol 3 times a week because i have inflammation too.

I called the Dr. yesterday and she said to wait a little bit longer on the neurotin and if still no sign of relief i'm going to tamper off and start something else. This is my first oral medication so im hoping there is something else out there for me. but its still a little upsetting Sad She also said that some women find that when tampering off the meds they realize that it was working when they start to reach a lower dose and we just dont notice it.

Have you tried anything other than neurotin? what are your symptoms?

ilovebaxter1

Posts : 47
Join date : 2011-09-13
Age : 32
Location : Boston

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Post  xlmc89x Tue Jun 12, 2012 1:33 am

Well, I had been with a different doctor for a long time taking testosterone but it did absolutely nothing. So this new one put me on the neurontin and clobetasol (which I have been doing every night before bed for 30 days so far) and suggested physical therapy which I just started. I had my initial consultation last week so I'll be doing that twice a week for 60days... I haven't felt any relief either though so far.

Basically I've been told a lot of things. The first Dr. I saw told me that my testosterone levels were low and that it was important to elevate it so I did that for about 18 months. He recommended a vestibulectomy which I did NOT want because it seemed to make no sense to me. So now I'm feeling like my drive is back to zero which is difficult for my boyfriend and I'm still feeling no relief. I've been contimplating adding the testosterone back into the mix to see if it helps at all but it's difficult to be taking so many medications. I feel like a slave to all these drugs. Every night at 9pm I have to start taking my pills and putting on this cream or that ointment. It's exhausting. Basically I have inflammation at the vestibule but the clobetasol seems to bring it down so its much less red until it is provoked again either by an exam or an attempt at intercourse. EXTREMELY FRUSTRATED

xlmc89x

Posts : 8
Join date : 2012-03-24

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Post  ilovebaxter1 Wed Jun 13, 2012 4:16 am

ugh i know the feeling. i am so sick of the stress, these pills and creams and not wearing cute underwear anymore Sad I have been using clobetasol as well! it has helped with my inflammation but i haven't tried tampering off it yet. I have inflammation and redness in the creases of my vulva and my vestibule. My Dr. said to keep on it until we find a medication that works and then well see where things lead. I just want this to be OVER. It's been almost 1 year since this started and i never thought i would still be having this problem this many months after. I've been trying to keep my head up but its hard when i have to start tampering off neurotin and try a new medication. I wonder what it will be..I am calling thursday to talk with my doctor and find out.

ilovebaxter1

Posts : 47
Join date : 2011-09-13
Age : 32
Location : Boston

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Post  ilovebaxter1 Thu Jun 14, 2012 5:16 am

also! i was just reading your post "my journey so far..." on the your story section and what a small world i go to the burlington office as well! however my dr. is Dr. Lipkin. She is great!

ilovebaxter1

Posts : 47
Join date : 2011-09-13
Age : 32
Location : Boston

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Post  amtali Mon Jun 25, 2012 9:34 pm

I tried Gabapentin for a few months. I found that it helped suppress unprovoked twinges of pain, but it did not help with pain during intercourse or any other provoked pain. I will say that my side effects were minimal with this medicine, unlike others I've taken in the past. But every woman responds differently to treatment, and every woman's pain is different. Good Luck!

amtali

Posts : 19
Join date : 2012-05-29

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