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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

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: 2

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: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

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: 4

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: 13

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

Comments: 0

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 …

Comments: 3

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 …

Comments: 6

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 …

Comments: 4


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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