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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 …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Gabapentin 6% <3

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Gabapentin 6% <3

Post  MensRea on 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.

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Re: Gabapentin 6% <3

Post  A2015 on 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

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Re: Gabapentin 6% <3

Post  MensRea on 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.


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Re: Gabapentin 6% <3

Post  A2015 on 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

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Re: Gabapentin 6% <3

Post  MensRea on 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!

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Re: Gabapentin 6% <3

Post  A2015 on 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

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Re: Gabapentin 6% <3

Post  MensRea on 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

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Post Surgery and going to try topical gabapentin

Post  amyhp on 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?

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Re: Gabapentin cream 6%

Post  Antaea on 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?
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Re: Gabapentin 6% <3

Post  MensRea on 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.

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Re: Gabapentin 6%

Post  Antaea on 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.
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Gabapentin 6%

Post  Antaea on Fri May 20, 2016 11:05 am

Are there any side-effects of local Gabapentin-creme? Maybe the same ones as for the pills?
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Re: Gabapentin 6% <3

Post  emalita on 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!

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RE: Gabapentin 6%

Post  Antaea on 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.
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Re: Gabapentin 6% <3

Post  emalita on 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

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Re: Gabapentin 6% <3

Post  fairlight10 on 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.

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Re: Gabapentin 6% <3

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