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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

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 …

Comments: 1

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: 9

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 0

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

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: 5

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


Newby not sure where to turn

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Newby not sure where to turn

Post  Cerjo87 on Thu Feb 01, 2018 3:32 pm

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d already the amatrimtaline and it didn’t work and I was not keen .  I’ve asked to be referred to a specialist to a proper clinic but she refused asking why I need to be referred. She said about seeking physiotherapist I asked if she could refer me for that again I got a no , apparently that is something I will have to pay privately for  which I can’t afford, I feel so lost and I’m so tired of it all now , it’s effecting my relationship with my husband, if anyone knows of any help there is out there I would really appreciate it , I live in the Oxfordshire area . Please help

Cerjo87

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GP

Post  VVSSufferer on Thu Feb 01, 2018 4:35 pm

Hey Girl! First of all, I'm sorry that this is happening to you.
I am also from England and faced some of the same problems as you, my GP refused to send me to a consultant I wanted.
The one she sent me to instead was terrible and left me in tears.

First of all, did you know you have a LEGAL right to choose your consultant?
'You have the right to choose a particular team headed by a named consultant for your first outpatient appointment, provided that the doctor referring you agrees that your choice is clinically appropriate. You can choose a team based at any hospital'

If your doctor does not refer you for treatment, say this is severely affecting your mental health and you will make a complaint to the CGC.
More info on that here:https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/
https://www.nhs.uk/chq/pages/902.aspx?categoryid=68&subcategoryid=162

Do you only have pain having sex/with insertion? Did you always have pain since your first attempt at intercourse? Is your pain constant? You may want to consider Surgery/Botox.

If you want to talk privately, feel free to message me Smile

VVSSufferer

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Re: Newby not sure where to turn

Post  sarisbaris on Tue Feb 13, 2018 6:07 am

I'm so sorry for your pain! I battled V for 15 years and I consider myself cured. Here's my blog. I followed the protocol by Anthony William. According to him cystitis is caused by an unknown/currently undectable strep virus. It can also cause vaginal burning. So I'm guessing you have strep. Don't worry about spending more money on doctors, they currently don't know what's going on. I've seen probably 20 western docs and countless alternative ones. Many of them were specialists and still had no clue.

Here's my blog...
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Here's more info on strep...
http://www.medicalmedium.com/blog/streptococcus-revealed

If you need to chat....
sarahcamp20@gmail.com

I had to do this by myself and I wouldn't wish that on anyone. Please reach out.
Sarah

sarisbaris

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Re: Newby not sure where to turn

Post  Cerjo87 on Tue Feb 13, 2018 8:06 am

Thank you for your message, I’ve been reading your blog and it dose nake some sense I suffer with irritable bowl and sinus issues, I suffer with really bad bloating as well . Although I have the feelings of cystitis the doctor tells me there is no infection they can see , but could that still be strep ? Also where can I get the ingredients for your drink please I’ve never heard of them ?

Thank you again x

Cerjo87

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Re: Newby not sure where to turn

Post  sarisbaris on Tue Feb 13, 2018 2:10 pm

Yes, it looks like you have strep. Yes the cystitis is strep as well. The doctors don't have the technology yet to detect these things. They've gotten a little better in 15 years during my battle but it's not good enough.

I actually might recommend something slightly different for you. Can you do me a favor? Email a list of your ailments (even things that you don't think are related because everything is related Wink plus a list of what you generally eat during the week. Break the food down into breakfasts, lunches, dinners, snacks and drinks. Strep feed on specific foods so you must remove those foods as well as take some supplements. It's not difficult but you'll be fighting strep in your kitchen Wink

I've been doing this for a few months with other women who are battling V and it seems to work better when I personalize something for them. I'm not a practitioner. I just fought my battle alone for 15 years and it was devastating. I'm just trying to help.

Sarah
sarahcamp20@gmail.com

PS - Start listening to more of his shows. I list the most pertinent ones to V on my blog. The more you know the better equipped you'll be to fighting this. All these viruses aren't strong, you just need to know how to kill them. I found that very true in my case.

sarisbaris

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Re: Newby not sure where to turn

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