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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 …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


After 3 years, finally on the right path!

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After 3 years, finally on the right path!

Post  sailor_moon on Sun Jul 24, 2016 11:57 am

Ok Ladies...so after 3 long and extremely hard miserable years, I am finally on the right path and getting the right treatment.

After 2 successful nerve blocks and my symptom history, I finally got to see the only Pudental nerve specialist in the southern hemisphere! And I pretty much have been diagnosed with pudental neuralgia...no surprise at this point given my symptoms.

He first asked my history and symptoms. He then got me to walk back and forth pacing the room. He then went on to press on areas of my back, butt and legs asking where hurt. He then gave me a vulva examination and used a Q tip to do a series of different movements 'tapping' with the q tip and 'brushing' the Q tip on specific areas.

He also believes that the menstrual regulating drug I'm taking has affected the tissue down there further adding to the inflammation.

He believes the cause of the problem is muscular, the muscles are constantly in a spasm and are bulking, causing pudental nerve trauma. given my excessive exercise history and the fact I have had a few falls on my ass over the years.

Treatment for now is a combo cream of 2% Amitripteline  and 0.05% estrogen, and once I get a GP referral, 3 months of physiotherapy by one of his trained physiotherapists [ I get 5 free sessions if I get my GP to refer me!]

Also, I am getting a special pudental nerve MRI done next week, to see whats going on and just in case of entrapment, but he highly doubts its entrapped at this point. We will just have to wait and see.

Dont give up hope ladies!! I believe we will all find a cure or means of relief, we just need the right doctor who is willing to help us. It has taken me 3 long, and very hard years to get the right help, but I never gave up, even though 14 other doctors told me to.

Any advice would be much appreciated. I will try and keep you all updated.


Last edited by sailor_moon on Sun Jul 31, 2016 5:38 am; edited 1 time in total
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Re: After 3 years, finally on the right path!

Post  emalita on Sun Jul 24, 2016 2:07 pm

That's great news! I hope this doctor and treatment regimen are finally the answers to your pain Very Happy

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Re: After 3 years, finally on the right path!

Post  PainBlogger on Sun Jul 24, 2016 8:35 pm

That's great new after so much frustration. Good luck with the cream and the physio.

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Re: After 3 years, finally on the right path!

Post  WaahwaahUK on Mon Jul 25, 2016 8:17 pm

Wishing you much luck and pain relief! Keep us posted.

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Re: After 3 years, finally on the right path!

Post  meelie on Thu Jul 28, 2016 11:07 pm

where are you? and how did you find a pudental nerve specialist? Good luck with your plan.

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Re: After 3 years, finally on the right path!

Post  sailor_moon on Sun Jul 31, 2016 5:43 am

Thanks ladies. I will definitely keep you posted!

I cant start physio yet as I am waiting for my GP to write up a chronic pain management plan so I can get 5 free physio sessions...hes on holidays so I cant get a referral from him for another 3 weeks! long wait but it has to be done so I can save some $$$....I'm frigging broke after these doctors costs while trying to pay my mortgage.

I have a special pudental MRI this week to get a better look at whats going on and to check for entrapment just in case....$550 later and a $200 motel room....and a 6 hour drive.

Meelie I am in Australia Smile this pudental specialist is in Australia too, in Sydney.
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Re: After 3 years, finally on the right path!

Post  lindsey_taylor on Mon Aug 01, 2016 12:13 am

I hope everything continues in a positive manner for you! You give us all hope with this!

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Re: After 3 years, finally on the right path!

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