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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


Needing Support for Vulvodynia - anyone able to speak I am struggling!

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Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  JS007 on Thu Dec 17, 2015 1:20 pm

Hi, I appreciate I have already posted a couple of things on here and thank you for the responses that I had. I am struggling to come to terms with having this condition - I wake up every morning thinking "this is going to be the day it disappears" or "after I go to the toilet today first thing It will feel normal"...sadly this is not the case. I started having symptons of discomfort back in June this year and only over the last month has the Gyneo suggested it is vulvodynia and put me on a course of Amitryptiline. I am now on 50mg a day (only upped this dosage 2 days ago) but I still have this feeling of "nappy rash" after going to the toilet, it is almost as if my skin becomes sensitive after pushing down for a bowel movement...or urinating, almost like the feeling of soiled underwear that rubs?? does this make any sense to anyone - I feel very alone with understanding this condition. I want the meds to work but don't know how long it should take to work?? I always have symptons EVERYDAY but they do vary dependent on my activities. I can have intercourse with no issues once inside - sorry TMI. I would like to hear how people get through having this before it disappears or gets under control? No one understands what this feels like, and the fact that because I don't have any "physical signs" of tenderness or redness etc. Is this still definitely Vulvodynia? I am worrying that it might be bladder related instead...but I feel everything down below??
I hope to hear from someone who is happy to give me some comfort that I will deal with this and get over it! Smile

JS007

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  WaahwaahUK on Thu Dec 17, 2015 1:42 pm

There are lots of people that have frequented this forum, and now don't, simply because they got better. People do get better. I understand the need for understanding with this condition, as it can make you feel so very alone. I think its important to remember that there are a lot of people who don't come here now because they got better. Healing can take time. Stress I believe can add to any pain. Empower yourself and arm yourself with knowledge and concentrate on being kind to yourself. This forum has helped me look at ways to improve how I feel and though I am by no means better, I do have better days.

WaahwaahUK

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  meelie on Thu Dec 17, 2015 9:53 pm

i don't come so often because i talked my primary into Rx for Trammadol for pain which keeps me comfortable most of the time. God bless this understanding Dr.

meelie

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  sailor_moon on Sat Dec 26, 2015 12:53 am

I am always up for a chat on here, so please feel free to PM me any time! It is so hard to try and vent to someone who has no idea how horrific this condition is. I wish this forum was more active like how it used to be. I would love to hear more about your story and how all this came about. Try and stay strong! xxx
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sailor_moon

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  sarisbaris on Thu Dec 31, 2015 4:15 pm

I am cured. I've been pain free for over 2 years. This didn't happen by accident. It didn't randomly go away. I was in and out of pain for 15 years until I found the right doctor. From what I have read on this site, my cure is rare. If the medicine you are taking isn't helping you, you need to find a doctor/medicine that can. Most doctors (both western and alternative) won't tell you that they don't know what it is. If they don't have a theory why it started and if your symptoms aren't getting better, then you need to find a doctor who can. When I finally found the right doctor (who is an alternative doc who gave me herbs in pill form... oh yeah, while I was 2 months pregnant) it took about 1 month for the pain to be manageable and 2-3 months for the pain to go away completely. It has never returned. Vulvodynia is just a label... it really only means your vagina area hurts. Seriously... that's it. It could be muscle, it could be an infection that they can't detect. It could be lots of things. Most doctors have absolutely no clue which is why this is so so hard for those in pain! We want answers and they don't have them. You need to be brave and listen to what the doctors are not telling you. Please read my post in 'Vulvoydnia Info' forum titled 'Cured from vulvodynia... ' There is hope!

sarisbaris

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

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