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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 …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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painfree for 3 years!

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painfree for 3 years!

Post  ilseke on Mon Aug 03, 2015 1:50 pm

I'm from Belgium and I have suffered from vulvodynia since I was 20. Back then gynaecologists found nothing wrong with me. I visited a lot of them...When I was +/- 35 I watched "embarrising bodies" on tv and heard of 'vulvodynia'. I knew that was it. I searched for a doctor who was specialised in it. He prescribed PLO-gel with 4% gabapentine. I applicated it for about a year and it resulted in three ab-so-lutely painfree years!!!!! Now the pain starts again and I will use the gel again. We all deserve a painfree life with nice sex. Don't stop dreaming about it!

ilseke

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Re: painfree for 3 years!

Post  A2015 on Mon Aug 03, 2015 6:04 pm

Hi Ilseke,

It is encouraging to read the words "pain free", as I don't see it written often.

I had VVS when I was on the Contraceptive Pill, when I stopped taking it, I was also completely pain free and normal.
This year, I have VVS again after a yeast and bacterial infection.

Could I ask if you could describe your symptoms in some more detail? Was/is your pain confined to the vestibule and did/do you have redness/inflammation?

How did your pain start when you were 20 and what has caused the pain to begin again?

I am from London and want to ask my Vulval Dermatologist if I can be prescribed Gapapentin cream here.

Thank you so much,
A2015

A2015

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painfree for 3 years!

Post  ilseke on Tue Aug 04, 2015 8:19 am

Hello

It started combined with my first sexual relation. My doctor (gynaecologist specialised in vulvodynia) says that's not uncommen. I had a lot of vaginal itch and pain: candida after candida infection and after several months it developed into vulvodynia but the vestibular variaty. I only had (burning raw) pain during intercource. If jou consider the vagina like a clock, my pain is located at 12h, where most women have it at 6h. The groep of 6h should be less resistent to therapy, according to my doctor. He said i had to use it for 4 or 5 months. With no result after that i should give up. But i just kept on using it for about a year and gradually the pain lessened and it stopped.

My gynaecologist was part of a multidisciplinary team with a psychologist, kinesitherapist and so on. But since i had experienced orgasms before my condition i didn't had to see them. And yes, after the pain subsided i experienced a lot of great sex and orgasms. cheers

I think it started again because i am vulnerable for it. I have a husband, so i have sex, wich often leads to mild candidasymptoms. And i didn't used the gel because the problem was gone.

It is still a less aggressive pain compared to when i was younger but i know it will become worse without the gel, so this afternoon my gel will be ready in the farmacy. Luckily i still had the original prescription and i just went to the towndoctor. I didn't have to pay him since he could copie my prescription and will give it to other paitients. I sent a mail to my gynaecologist. Should he say something valuable i will post it on this forum.

The gel is really expensive, but i need it. You have to buy a whole box of pills and you only need 1 or 2 pills to make the potion.

Gabapentine are pills for people with epileptica. They do something to the painreceptors in our vagina. (In Belgium that medicine is named Neurontine, but generic name is gabapentine)The pharmacist mix the pills (the powder) with a cream that is most often used for vaginal use: Pluronic Lecithine Organogel. My original prescription was 4% but there also was a note on it to prepare the gel 6%. My towndoctor prescribed me the 6% one. I hope to suppress the painreceptors rapidly... I wrote you the prescription below.

prescription for 100g gabapentine gel (4%):
take 10 pills Neurontine (or generic) 400 mg capsules gabapentine
make them into powder
look at the weight of the powder
calculate mass of pluronic hydrogel* (PLO)-fase=80% x (100g - weight of powder)
mix powdermass and PLO
add lecithine (ad 100g)
mix untill gell is homogene

for 6% gel use 15 capsuls of 400mg
* can be ordered at Fagron ( Fagron PLO kit 200g, code 2399350)


Don't give up on yourself. Get that gel and applicate it every evening. After all, what alternative do we have?
Ilse


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Re: painfree for 3 years!

Post  A2015 on Tue Aug 04, 2015 9:44 am

Hello Ilse,

Thank you so much for your detailed reply. It seems my symptoms are quite similar.

I have redness of the whole vestibule, slight inflammation, sore/raw/burn to touch, vestibule skin tears during sex because the skin is inflammed/delicate (I tear at the 6o'clock and either side just inside the opening), frequent on/off itching of the vulva (even when there is no candida found), prone to infections.

Did you continue to experience candida infections during the 3 years you were pain-free without using the gel?

Did you notice any visible changes to your vestibule skin?
Every doctor I see tells me my vulva looks "normal" to them, but I know for a fact it is red/slightly inflammed. I can say this with certainty because when I was cured from VVS after coming off the Pill, my vestibule skin tissues returned back to their normal colour & I knew I was 100% healed. When it started this time after an infection, I knew my VVS was back.
I am concerned that any nerve relieving creams won't reduce the redness so I'll never feel fully cured, but I suppose I have to start to accept that I may not be fully cured and any treatment can just help.

Could I ask if you are/were ever on hormonal birth control?

Did your pain start again without being triggered by an infection, it just started to burn during sex again?

I think mine started again (after being absolutely pain free when I stopped the Pill), because I am vulnerable to VVS after having it once before. Perhaps my body has a memory of how it responded to an infection (when I had VVS before), and that's why my symptoms have come back.

I very much hope I am able to get this cream in the UK and that my Vulval Dermatologist will prescribe it to me. I will bring your description with me, thank you very much.

A2015

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Re: painfree for 3 years!

Post  ilseke on Tue Aug 04, 2015 3:06 pm

During the 3years i had sometimes an itch or candidelike symptoms, but very mildly, nothing that couldn't be solved with cold wather. I didn't have to take any medication. When i was 20 i had some monstreous candideinfections and they discolored my skin permanentely. I know that, because i can compare it. Doctors think it is just normal.
I never took birthcontrolpills. Maybe condoms are better because there's less bodyfluid and less chance to invoke an potential infection.
The vvs just restarted like that. At first a very little bit of pain, i didn't noticed it wright away.
But here we go again Wink

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Re: painfree for 3 years!

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