Vulvodynia Support
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» Hope to all my suffering ladies
Gabapentin 6% <3  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Gabapentin 6% <3  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Gabapentin 6% <3  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Gabapentin 6% <3  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Gabapentin 6% <3  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Gabapentin 6% <3  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Gabapentin 6% <3  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Gabapentin 6% <3  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!
Gabapentin 6% <3  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


Gabapentin 6% <3

+2
A2015
MensRea
6 posters

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Gabapentin 6% <3  Empty Gabapentin 6% <3

Post  MensRea Mon Aug 17, 2015 8:13 pm

I have great news! Very Happy
As i said many times in the forum, i have provoked and unprovoked localised vulvodynia. I have this problem 10 years now. The unprovoked pain was located near of my urethra, the pain was constant, and the urination was painful! It's been two months since i started applying Gabapentin cream 6% and i don't have unprovoked pain anymore! As for the provoked pain, yesterday i had 98% pain free sexual intercourse. I didn't use lidocaine or artificial lubrication, only condom. Razz I am also taking 75 mg amitriptyline, but i did the same therapy in the past without any success, and for that reason i am not sure whether the pills helped me this time.

MensRea

Posts : 30
Join date : 2015-04-20

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Post  A2015 Mon Aug 17, 2015 11:13 pm

Hi MensRea,

This is really encouraging to read, you must be so relieved to have some relief after suffering for so long.

I am really hoping my Vulvar Dermatologist (on the NHS, but she also works privately) can prescribe me Gabapentin cream.

You responded recently on one of my posts about finding this cream in the UK (I'm in London) — I just wondered if you could clarify a little more about how you got it? You wrote that my doctor could write the prescription, but you ordered it from your country with the Gabapentin pills smashed into the cream. Did you need a prescription to obtain the cream from outside of the UK?

Could I also ask if you ever experienced vestibule skin tearing? And whether your skin has redness? My skin feels damaged as my Vestibulodynia was triggered by a yeast infection and I wonder whether this cream would strengthen the skin, not just reduce pain on touch.

Thank you so much,
A2015

A2015

Posts : 53
Join date : 2015-05-21

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Post  MensRea Mon Aug 17, 2015 11:30 pm

Hi A2015!

Yes you can find the cream in UK, but you need a prescription. The NHS usually does not offer that option, but if your doctor also works privately would not be an issue! You only need to show her this research: http://www.ncbi.nlm.nih.gov/pubmed/18757655.

My father is a doctor therefore it was very easy to get the prescription:P But, i can ask my pharmacists whether he is willing to provide you the cream even if you don't have a prescription.

As for the vulvodynia. Yes, my skin was red and damaged, i couldn't stand even the light touch! Any kind of penetration was impossible. However, i haven't experienced vestibule skin tearing, but the cause of the pain, is probably the same as yours.


MensRea

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Post  A2015 Fri Aug 21, 2015 10:14 pm

Hi Mensrea,

Thank you again for writing back.

I have some info which may be useful to anyone else in the UK (I'm in London) in a similar situation.

I saw a female dermatologist I had first seen privately, for a 2nd appointment through the NHS (I was examined by another female specialist in her team, who listened to my whole story and had a very kind manner). She was VERY interested and open to hear my suggestions for treatment, unlike many doctors I have seen. I printed & brought along the topical Gabapentin study as well as this document from Dr. Goldstein in America (http://www.issmsmsna2012.org/present/_pdf/1050.pdf) which also supports the use of topical Gabapentin 6%. She looked at them and was extremely keen to keep the copies to read thoroughly later.

Both she and my dermatologist who she consults with (specialising in vulval conditions) said how common this condition is and how often they see it. Despite this, neither had really heard of the use of Gabapentin cream and did not know whether it was available on the NHS or elsewhere! They said they would look into it for me, but for the time being, to try Dermovate steroid cream which I have been reluctant to use because I've read of negative experiences with this condition. I was shocked again to see another specialist with little knowledge of a treatment option which is being discussed online and/or prescribed in other countries Sad

They also had no experience/knowledge of how the Pill can play a key role in this condition developing, which is something I personally experienced (I had VVS when I was on the Pill, which went away completely when I stopped taking the Pill and only returned recently after getting an infection) just like several others I've read about online, and Dr. Goldstein has written about extensively.

So, sorry for rambling!

I wondered if you had found out from your pharmacist about whether it is at all possible to get this cream without a prescription (I feel unlikely)? The wait for my next dermatologist appointment is in 3 months and is through the NHS, but I would be happy to pay privately in order to obtain this prescription.

I wondered if you were able to write down for me what exactly your prescription says? If so, I may be able to simply request that my dermatologist writes me one for the same thing, I'd be happy to pay the £100 for a tube or anything it costs to try it. She did not seem opposed to the idea of trying this cream, as I said I want to try this before any oral antidepressants, but simply didn't know the dosage or whether she could get it. I appreciate your insight hugely, and really hope you're continuing to find relief from your symptoms.

A2015

A2015

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Join date : 2015-05-21

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Post  MensRea Fri Aug 21, 2015 11:06 pm

Hi A2015!

I have contacted my pharmacist and unfortunately you need a prescription for the gabapentin pills, therefore you need for the cream too. I can't recall the dosage right now, but i will ask my dad tomorrow, he is the one who found the appropriate dosage and what ingredients must be included. He also told me that the gabapentin cream has no any side effects [unlike the pills], therefore you have nothing to lose by trying this treatment. I don't understand why the most doctors are so reluctant to prescribe the cream.  Btw, sorry for saying that, but my unprovoked pain was caused by Dermovate! if you want to use it, make sure that you are not applying it more than one time per day, and not longer than 2 weeks!

MensRea

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Post  A2015 Fri Aug 21, 2015 11:44 pm

Thanks so much, the specific details of your prescription would be really useful if you can access them for me.

My doctors weren't reluctant to prescribe it, but didn't know much about it so I feel it is up to me to specify what I would like to try!

And yes, Dermovate was prescribed twice daily for 2 weeks, but I haven't read any cases of success with it for this condition and often read that it can cause more discomfort like you say, so have held off using it. For now I am just using some Lidocaine which eases discomfort mildly but is not a cure.

Many thanks again,
A2015

A2015

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Post  MensRea Fri Aug 21, 2015 11:54 pm

It wont be difficult! Some women persuaded their doctors to inject them with botox, and botox has more side effects than tis cream. The cream is harmless, if they understand that it wont be difficult to agree with the treatment! I will send you tomorrow the 'recipe' Razz

MensRea

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Gabapentin 6% <3  Empty Post Surgery and going to try topical gabapentin

Post  amyhp Tue Sep 22, 2015 10:14 pm

Hi,

I was wondering if you are still experiencing relief from the topical gabapentin? I had a vulvar vestibulectomy back in January. The pain with penetration has improved, but my daily pain is constant.
Is your pain constant?

amyhp

Posts : 34
Join date : 2015-09-22

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Post  Antaea Mon May 16, 2016 10:56 am

In Norway, no topical Gabapentin is available. It is not possible to import any medicament, if it not over the counter and with a Norwegian text. So I wonder whether it is possible to make the cream by oneself. I take Gabapentin orally and if I am not wrong, one will need 1800 mg, 6 capsules to 300 mg, and 30 g neutral cream-base. Has anyone tried this?
Antaea
Antaea

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Post  MensRea Wed May 18, 2016 6:16 pm

amyhopexoxo:

Hey!! Yeap! I don't have nerve pain anymore, my muscles are weak though however this is something that can be improved only by doing some physio. Also my pain is located to the vestibule area and the most times the pain is provoked!

Antaea:

I will try to find the prescription. It's been months since the last time i have ordered the cream so i cant recall right now the prescription. I need to ask my pharmacist.

MensRea

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Post  Antaea Thu May 19, 2016 10:14 am

Hi, og thank you for looking up the prescription.
In the meantime I mixed the content of one of my pills, 300 mg, with 5 grams of coconut oil, and apply this twice a day. I take one capsule Neurontin to 300 mg at night. My pain, generalized V, has ceased a lot, it's more a discomfort than a real pain for the third day by now. I have some side-effects, since it is only the 7th day of medication today. Feel very foggy and drunk, have some diarrhoea, and am on sick leave from my work as a teacher, but this doen't really matter. As long as it eases the pain. I shall not tell my doc, who is quite young and inexperienced, about compounding my own local treatment, but I've the impression, at least it does not harm. So I'll continue with it.
Antaea
Antaea

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Post  Antaea Fri May 20, 2016 11:05 am

Are there any side-effects of local Gabapentin-creme? Maybe the same ones as for the pills?
Antaea
Antaea

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Post  emalita Fri May 20, 2016 1:31 pm

The added side effects on top of what is possible in pill form would be localized pain from the cream (burning, itching, etc.).

Besides for any pill side effects impacting the gut (nausea, diarrhea, constipation), I would say you will have to consider all of the other side effects that are possible from the pill, but they should be less in the cream since it isn't being systemically used. My doctor told me the side effects should be less in the cream but that the cream could also be less effective.

I hope it works for you!

emalita

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Post  Antaea Fri May 20, 2016 5:00 pm

Thank you so much, Emalita. This was indeed helpful. I had some pain, but it comes and goes, I also think of too little fluids and orange-juice, which I mix with water 1:4. I shall skip it and drink more water. Then we'll se.
Antaea
Antaea

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Post  emalita Fri May 20, 2016 5:15 pm

Considering the foods we eat is so important in my opinion. In the last 5 months or so I was experiencing the worst acne of my life. They were the deep, swollen, and sore zits that never seemed to go away. I was also getting them on my cheeks, jawline, and down my back, which I've never gotten before. Well, I decided to eliminate peanut butter and almond butter from my diet because I had added peanut butter back into my diet around the same time the zits came around (cut out almond butter too just in case). Within a week of eliminating these items my acne started to clear up, and the best part is some of my vulva pain reduced significantly around this time, too. Now, I'm not 100% sure on the vulvar symptoms...it's possible that it's just a coincidence, but it would be a big coincidence!

I figured that if these foods were causing such bad inflammation on my face and back, why wouldn't it be likely that it was encouraging inflammation elsewhere. I'm sure if my vulva was healthier peanut butter wouldn't bother my lady parts, but since they are already so unhappy, I don't think it's too big of a leap to assume any inflammatory food can make the pain worse.

I hope drinking more water helps you Very Happy

emalita

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Post  fairlight10 Fri May 20, 2016 7:34 pm

Hello Emalita. I have read peanut butter is high in oxalates so I stopped eating it. Foods high in oxalates are best avoided with our condition.

fairlight10

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